Vaidya, Gaurav

RENCI Out of the Office

RENCI Calendar-Analytics

Heal Data Calendar

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Translator Hackathon</div>
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Gaurav OOO

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Building on recent FreshFAIR sessions highlighting emerging HEAL data reuse opportunities, this extended tutorial will provide a structured, hands-on introduction to identifying, evaluating, and working with existing HEAL datasets to support secondary research.&nbsp;</div>
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After briefly reviewing common data reuse challenges, we will introduce key HEAL Data Ecosystem (HDE) discovery tools—the HEAL Data Platform and HEAL Semantic Search (HSS). Guest speaker Anna Zajacova, PhD, Professor of Sociology at Western University, will
 share insights from her experience conducting secondary analysis of large-scale population health datasets.</div>
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The second half of the session (1:30–2:30 PM) will include two concurrent, interactive breakout sessions, one demonstrating each discovery tool.</div>
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The HSS breakout will help participants identify combinable datasets, examine variable mappings, and bookmark relevant studies for potential reuse. The HEAL Platform breakout will focus on navigating Platform metadata and demonstrating how to load data into
 a workspace environment for secondary analysis.</div>
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The breakouts are structured to promote active participation and hands-on engagement. As such, participants should bring specific research questions or interests to explore directly with HEAL ecosystem experts.&nbsp;</div>
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<span style="color:rgb(0,0,0)">In preparation, participants should review the April 2026 webinar (available on our
</span><span style="color:rgb(17,85,204)"><a href="https://www.youtube.com/@nihhealinitiativedataecosy4164" id="OWAbbb22986-63ac-6ef1-be15-50e0f82f4674" class="OWAAutoLink" style="color:rgb(17,85,204)"><u>YouTube channel</u></a></span><span style="color:rgb(0,0,0)">&nbsp;and
 via the links below) and be familiar with its content covering HSS and the HEAL Data Platform.</span></div>
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<span style="color:rgb(17,85,204)"><a href="https://www.healdatafair.org/resources/semantic-search/help" id="OWA81d66fcd-274c-14aa-2300-5f3775a015c1" class="OWAAutoLink" style="color:rgb(17,85,204)"><u>HSS resources</u></a></span>:
<span style="color:rgb(19,41,75)"><a href="https://go.unc.edu/HSSresource" id="OWA138ad050-5447-58b7-7971-3b252375e3eb" class="OWAAutoLink" style="color:rgb(19,41,75)">go.unc.edu/HSSresource</a></span></div>
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<span style="color:rgb(17,85,204)"><a href="https://heal.github.io/platform-documentation/workspaces/" id="OWA2dbc61f2-b494-bfe1-b1a9-8bc770bb0a49" class="OWAAutoLink" style="color:rgb(17,85,204)"><u>HEAL Platform resource</u></a></span>:
<span style="color:rgb(19,41,75)"><a href="https://go.unc.edu/HEALPlatformresource" id="OWA4699d163-7e0c-7726-6532-edaedcc9f969" class="OWAAutoLink" style="color:rgb(19,41,75)">go.unc.edu/HEALPlatformresource</a></span></div>
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<a href="https://renci.zoom.us/meeting/register/SiI-72KzRAKGBJ67GTAtqQ#/registration" id="OWAba1d761e-1e94-4504-0b12-52c232e73761" class="OWAAutoLink" style="color:rgb(17,85,204)"><u>Register Here</u></a></div>
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Building on recent FreshFAIR sessions highlighting emerging HEAL data reuse opportunities, this extended tutorial will provide a structured, hands-on introduction to identifying, evaluating, and working with existing HEAL datasets to support secondary res

[HEAL Fresh FAIR Tutorial] Identifying and Reusing Datasets in the HEAL Data Ecosystem

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The May Collective Board (CB) Meeting discussion converged on the idea that “high-value datasets” should not be defined by a single standard but rather as a set of context-dependent, reuse-driven signals shaped by audience and research purpose. CB members consistently
 emphasized interoperability and reuse potential—especially the ability to link, combine, and “re-mix” datasets across systems—as the strongest indicator of value, alongside high-quality documentation (e.g., clear variable definitions, missingness rationale,
 collection methods, and study constraints) and technical usability, including AI- and ML-readiness. The group highlighted that value varies by use case (e.g., training, clinical trials, disparities research, implementation science), and that datasets gain
 importance when they support question generation, secondary analysis, or scaling insights. There was also recognition that rare or difficult-to-reproduce datasets (e.g., specialized biological or longitudinal administrative data) may be inherently high value
 even if imperfect, and that support is often needed to enhance curation, standardization, and alignment beyond what primary study teams can feasibly deliver.</div>
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The May Collective Board (CB) Meeting discussion converged on the idea that “high-value datasets” should not be defined by a single standard but rather as a set of context-dependent, reuse-driven signals shaped by audience and research purpose. CB members

[Collective Board Meeting] High Value HEAL Datasets

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This webinar explores the data reuse journey, providing perspective from a researcher who successfully conducted secondary analyses using existing datasets. Guest speaker Ravi Mathur, PhD, of RTI International, is a researcher specializing in biomedical data
 science, real-world data analysis, and cloud-based research platform use. He shares insights from his experience reusing shared datasets within the NHLBI BioData Catalyst (BDC) ecosystem that inform similar approaches within HEAL. While more HEAL-funded studies
 are maturing all the time and building a richer landscape of shareable data, hearing from researchers outside the HEAL Initiative can offer valuable perspective on how shared datasets can be leveraged to generate new findings, extend prior work, and develop
 novel research questions.</div>
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The webinar includes&nbsp;an overview of key HDE data reuse tools, such as the HEAL Data Platform and HEAL Semantic Search, and how they facilitate data discovery.</div>
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This session aims to inspire HEAL investigators and the broader research community interested in pain and opioid use disorder research to explore the HEAL Data Ecosystem, and consider how existing datasets can support new analyses and scientific discovery.</div>
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We conclude with a Q&amp;A featuring the guest speaker and HEAL ecosystem experts. Attendees are invited to join our May data reuse hands-on tutorial for a deeper walkthrough of the HDE tools and step-by-step demonstrations of identifying and reusing HEAL datasets.</div>
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This webinar explores the data reuse journey, providing perspective from a researcher who successfully conducted secondary analyses using existing datasets. Guest speaker Ravi Mathur, PhD, of RTI International, is a researcher specializing in biomedical d

[Fresh FAIR Webinar] Discovering New Science Through Data Reuse

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This webinar showcases&nbsp;NIH HEAL Data Ecosystem (HDE) progress, highlighting how appropriate tools, metadata quality, and advances in scientific community engagement strengthen data sharing and reuse opportunities.&nbsp;</div>
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Participants receive a high-level overview of key HDE developments, including shared dataset growth, repository deposition trends, and increased adoption of standardized data practices, such as the use of common data elements. The session also highlights how
 these developments support study discoverability, interoperability, and future data reuse through shared infrastructure and community-driven standards.</div>
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The webinar concludes&nbsp;with a look at upcoming HDE enhancements, opportunities for continued engagement, and an interactive Q&amp;A. Attendees leave with a clear understanding of how ongoing ecosystem efforts can directly support their research by making data easier
 to find and combine, expanding opportunities for cross-study and secondary analyses.</div>
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Recording link <a href="https://youtu.be/P5qBgsvANR4" title="https://youtu.be/P5qBgsvANR4">
here</a>.</div>
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This webinar showcases NIH HEAL Data Ecosystem (HDE) progress, highlighting how appropriate tools, metadata quality, and advances in scientific community engagement strengthen data sharing and reuse opportunities.
Participants receive a high-level overvi

[Fresh FAIR Webinar] Strengthening FAIR Data in Practice: Updates from the HEAL Data Ecosystem

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Collective Board Meeting Summary: HEAL investigators would be interested in knowing about the HEAL data sets that are available and specifically their value proposition, e.g., what questions they could potentially answer. Several members agreed that a hackathon
 would be a good way to get people using the data and tools (HEAL Data Platform and HEAL Semantic Search). We have to look at the data to find questions that could be answered. Pilot grants for students/fellows could also get people using the data.&nbsp;</div>
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In the broader pain &amp; OUD community, people are interested in the AI readiness of the data, data that could be used for trainee or pilot projects, and data that could be translated into practice. These audiences would be interested in case studies. Conferences
 could provide an opportunity to reach a broader audience, specifically AHSR, Joint Statistical Meetings of the American Statistical Association, USASP, CPDD, ASAM, SMB, and ACCJH. Members suggested a newsletter to inform stakeholders about new data sets and
 the tools and resources available to support data reuse.</div>
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Collective Board Meeting Summary: HEAL investigators would be interested in knowing about the HEAL data sets that are available and specifically their value proposition, e.g., what questions they could potentially answer. Several members agreed that a hac

[Collective Board Meeting] HEAL Data Ecosystem (HDE) Progress

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Getting started with the HEAL data sharing task early can simplify the data collection and management journey, reduce last-minute stress, and ensure investigators remain in compliance with the HEAL and NIH Data Management and Sharing Policy. This interactive
 office hours session provides&nbsp;attendees with a clear understanding of the requirements outlined in the HEAL PI Checklist and introduces key resources to support timely and confident reporting.</div>
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Participants:</div>
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Receive a high-level walkthrough of early compliance actions, via the HEAL PI Checklist.</div>
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Learn how to register a study on the HEAL Data Platform and access the CEDAR study-level metadata form.</div>
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Explore the HEAL Data FAIR Stewards website, receive guidance on using the Checklist Tracker and on requesting Stewards consultations.</div>
</li></ul>
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The session concludes&nbsp;with a Q&amp;A with HEAL Stewards and Platform team members, giving attendees the opportunity to clarify questions and gain guidance for timely engagement with HEAL requirements.<br>
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Getting started with the HEAL data sharing task early can simplify the data collection and management journey, reduce last-minute stress, and ensure investigators remain in compliance with the HEAL and NIH Data Management and Sharing Policy. This interact

[HEAL Office Hours] Navigating the PI Checklist and HEAL Data Platform

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<span style="color:rgb(0,0,0)">This webinar&nbsp;focused on how research teams can set themselves up for success by planning for data sharing early and throughout their study lifecycle. Building on the
</span><span style="color:rgb(17,85,204)"><u><a href="https://www.youtube.com/watch?v=fqYmmnBNQtA" id="OWA7d8717d2-52ed-bc66-0b7d-1f62cc2dfd69" class="x_x_OWAAutoLink" style="color:rgb(17,85,204)">March webinar</a></u></span><span style="color:rgb(0,0,0)">,
 which emphasized how to assemble and submit a complete data package, this session provided
<i>proactive strategies</i>&nbsp;to embed data sharing and packaging into study workflows early, reducing submission burdens and setting teams up for long-term success.&nbsp;</span></div>
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Participants heard from HEAL Stewards on why proactive planning matters, lessons learned from supporting investigators, and specific actions to take at each stage of the research lifecycle. A guest presentation from Dr. Keith Marsolo of the NIH Pragmatic Clinical
 Trials Collaboratory overviewed how research teams plan for data deposition, including practical strategies, common challenges and solutions, and best practices. The session also highlighted key resources, such as the NIH Pragmatic Trials Collaboratory Living
 Notebook, ICPSR Social Science Research Guide, and HEAL Stewards’ planning tools.<br>
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The webinar concluded with key takeaways and an interactive Q&amp;A, giving participants the chance to ask questions and explore how early planning can make data management and sharing more efficient and sustainable.&nbsp;</div>
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View the webinar recording <a href="https://youtu.be/IfoVDOiUqbo" title="https://youtu.be/IfoVDOiUqbo">
here</a>.</div>
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This webinar focused on how research teams can set themselves up for success by planning for data sharing early and throughout their study lifecycle. Building on the March webinar, which emphasized how to assemble and submit a complete data package, this 

[Fresh FAIR Webinar] Planning for Data Deposition: Best Practices and Key Resources for Researchers

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Collective Board Meeting Summary: The board discussed ideas for further increasing the usability and value proposition of HEAL Semantic Search (HSS). In response to the UI improvements in the new release, one member said, “this is so much better. You guys have
 done great.” At the same time, they felt more data is needed in the HEAL Data Ecosystem for HSS to reach its potential. There was interest in how HSS ranks search results, and the conversation included the idea of ranking higher the studies using CDEs, providing
 users with a relative score on how well each result correlates to the search term, and providing options to view results through a particular lens. The Stewards collected many suggestions for general improvements including opening a new tab rather than navigating
 away from the HSS tool, adding a “Data Available!” logo to studies for which data is accessible, and offering users a sample search to make it easy to get started with a positive search experience.</div>
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Collective Board Meeting Summary: The board discussed ideas for further increasing the usability and value proposition of HEAL Semantic Search (HSS). In response to the UI improvements in the new release, one member said, “this is so much better. You guys

[Collective Board Meeting] New HEAL Semantic Search Release

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Webinar participants see FAIR in action through real-world examples from HEAL investigators who have applied FAIR practices across the research lifecycle. This webinar highlights the NIH HEAL Initiative’s commitment to transparency, reproducibility, and collaboration
 by presenting practical applications of the FAIR principles (Findable, Accessible, Interoperable, and Reusable).&nbsp;</div>
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The session begins with an introduction from HEAL NIH leadership, followed by presentations from Kira Bradford, PhD, Co-PI of the HEAL Data Stewardship Group, and HEAL researchers sharing real-world use cases. Participants learn how data assets become more
 visible and reusable when FAIR is applied thoughtfully.</div>
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Whether you are new to FAIR concepts or seeking inspiration to strengthen your own data management practices, this session offers practical examples and insights. The webinar concludes with an interactive Q&amp;A with presenters.</div>
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Webinar participants see FAIR in action through real-world examples from HEAL investigators who have applied FAIR practices across the research lifecycle. This webinar highlights the NIH HEAL Initiative’s commitment to transparency, reproducibility, and c

[Fresh FAIR Webinar] HEAL Data In Action

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Collective Board Meeting Summary: The Collective Board found HEAL workspaces to be useful and to accommodate most relevant analytic use cases. FedRAMP moderate security was considered very important. Members reported using cloud-based workspaces like Google
 and Azure to work with public datasets but internal, HIPAA-compliant infrastructure for working with sensitive data. One institute has their own secure research enclave. Tools being used include Jupyter, Posit (formerly RStudio), SAS, and Stata. There is desire
 for SAS in the researcher community, but it was acknowledged that licensing issues make offering SAS in HEAL workspaces not possible at this time. Several members saw a need for shared workspaces for real-time collaboration. To demonstrate the value to potential
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Collective Board Meeting Summary: The Collective Board found HEAL workspaces to be useful and to accommodate most relevant analytic use cases. FedRAMP moderate security was considered very important. Members reported using cloud-based workspaces like Goog

[Collective Board Meeting] HEAL Data Platform Workspaces

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<p class="MsoNormal"><span style="font-size:11.0pt">Building on our <a href="https://youtu.be/qMZXy0VnuVc" title="https://youtu.be/qMZXy0VnuVc">
previous webinar</a> in May 2025, CDEs Demystified&nbsp;dives deeper into the role of Common Data Elements (CDEs) and variable-level metadata (VLMD) in advancing FAIR data practices within the HEAL Data Ecosystem. Whether or not you attended the prior webinar, this
 session will provide fresh insights and practical updates for all participants.&nbsp;This webinar begins with an overview of the FAIR principles (Findable, Accessible, Interoperable and Reusable) and highlights how VLMD ensures data discoverability and integration
 across the HEAL Platform. We then examine how CDEs and VLMD serve as building blocks for data consistency, reduce variability, and improve cross-study analysis to support NIH’s mission for interoperable and reusable data.</span></p>
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<p class="MsoNormal"><span style="font-size:11.0pt">Participants receive a refresher on CDE fundamentals and learn about recent advancements to HEAL CDEs that help study teams meet NIH data submission requirements. The HEAL Platform team introduces the CDE
 Picker, a user-friendly tool that streamlines the selection and application of CDEs for metadata tagging. The session concludes with a live Q&amp;A featuring the HEAL Stewards, Kathy Sward from the University of Utah, and a member of the Platform Team.</span></p>
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Building on our previous webinar in May 2025, CDEs Demystified dives deeper into the role of Common Data Elements (CDEs) and variable-level metadata (VLMD) in advancing FAIR data practices within the HEAL Data Ecosystem. Whether or not you attended the pr

[Fresh FAIR Webinar] CDEs Demystified: Tools, Updates and Best Practices for FAIR Data

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Effective metadata documentation advances FAIR data practices within the HEAL Data Ecosystem. This webinar provides HEAL investigators and data management teams practical guidance on developing and managing data dictionaries and variable-level metadata (VLMD).&nbsp;</div>
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Participants will learn to differentiate between metadata types, determine when a data dictionary is applicable, and discover resources for handling diverse data types, including qualitative and non-tabular data. The session highlights HEAL-specific tools,
 such as the Variable Standards Finder and the VLMD Validator, supporting metadata creation throughout the study lifecycle, from pre-award planning to data deposition.&nbsp;</div>
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Attendees will also see how VLMD directly enhances study findability, and potential reuse of their data by powering discovery tools like the HEAL Semantic Search and the HEAL Data Platform. The webinar concludes with a live Q&amp;A session, providing an opportunity
 for personalized metadata documentation and submission support.</div>
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Effective metadata documentation advances FAIR data practices within the HEAL Data Ecosystem. This webinar provides HEAL investigators and data management teams practical guidance on developing and managing data dictionaries and variable-level metadata (V

[Fresh FAIR Webinar] Empowering Data Reuse: A Guide to Creating Data Dictionaries and Variable-Level Metadata (VLMD)

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Collective Board Meeting Summary: Dr. Nora Volkow, NIDA Director expressed it is a key priority to ensure data from HEAL studies is not only deposited in databases as mandated by NIH but also made accessible and reusable by researchers through the HEAL Data
 Ecosystem. Dr. Volkow cited the continuation in March of the public health declaration addressing the national opioid crisis and Secretary Kennedy’s and Dr. Bhattacharya’s attendance at the ‘Rx and Illicit Drug Summit' in Nashville in April as evidence the
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Members shared valuable suggestions for a new Stewards resource under development: Data Sharing Throughout the Research Data Lifecycle, including 1) aligning phases to the grand funding cycle, 2) organize so users looking for specific information can find it,
 3) include lessons learned to help investigators avoid common mistakes, 4) use clear action steps, 5) be very clear about steps that are required, 6) address data provenance, 7) provide examples, and 8) include data citation.</div>
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Some members experienced difficulty using the Checklist Tracker because it requires the full project number, including the type and suffix of the specific NIH award used to represent the study on the HEAL Data Platform. Several members felt linking to investigator
 resources which could be useful to others could be helpful and an incentive for researchers, helping them feel like part of the HEAL community.</div>
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Collective Board Meeting Summary: Dr. Nora Volkow, NIDA Director expressed it is a key priority to ensure data from HEAL studies is not only deposited in databases as mandated by NIH but also made accessible and reusable by researchers through the HEAL Da

[Collective Board Meeting] Setting PIs up for Data Sharing Success

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HEAL data sharing is most effective when researchers understand expectations across the research lifecycle, from study registration to data submission. This webinar features a 30-minute presentation in which we will overview the HEAL Data Ecosystem, walk through
 the PI checklist, and offer step-by-step guidance on data sharing across the research lifecycle. Following the presentation, participants can enjoy a one-hour breakout session to receive live, personal support on topics like metadata, repository selection,
 and data packing.&nbsp;</div>
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Recording link <a href="https://youtu.be/mhQNHFpbNMY" id="OWA1d760f6c-d1b8-e383-5559-fa9624b7b857" class="OWAAutoLink" title="https://youtu.be/mhQNHFpbNMY">
</a><a href="https://youtu.be/qMZXy0VnuVc" title="https://youtu.be/qMZXy0VnuVc">here</a></div>
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HEAL data sharing is most effective when researchers understand expectations across the research lifecycle, from study registration to data submission. This webinar features a 30-minute presentation in which we will overview the HEAL Data Ecosystem, walk 

[Fresh FAIR Webinar] Completing the HEAL PI Checklist: Guidance for Every Stage of Your Award Lifecycle

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Research publications that thoroughly document and describe research methods, the data, and analyses within the publication along with comprehensively shared data maximize HEAL research impacts.
<span style="font-weight:700"><i>This webinar will highlight the key elements to be included in HEAL-supported publications,
</i></span>focusing on transparency (i.e., ensuring the clarity and availability of underlying data for verification and reuse), data availability statements, and enabling secondary data use.</div>
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HEAL Stewards will discuss key elements researchers should include in HEAL-supported publications to meet NIH policies and maintain data transparency, defined as clarity and openness about underlying research data access and reuse. This presentation will include
 HEAL publication metrics and real-world examples from HEAL-funded research, highlighting effective strategies to meet NIH data-sharing requirements and integrate repository unique identifiers into manuscripts.</div>
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Attendees will learn best practices for referencing where a publication’s data can be accessed through persistent identifiers like DOIs, while also navigating journal data-sharing requirements. The session will conclude with an interactive Q&amp;A featuring the
 presenters, offering participants the opportunity to engage directly with experts and address common publication challenges.</div>
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Participants will leave with actionable strategies to enhance transparency, reproducibility, and the overall impact of their HEAL research publications.</div>
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Recording <a href="https://youtu.be/TyCJsldd-rg" title="https://youtu.be/TyCJsldd-rg">
here</a></div>
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Research publications that thoroughly document and describe research methods, the data, and analyses within the publication along with comprehensively shared data maximize HEAL research impacts. This webinar will highlight the key elements to be included 

[Fresh FAIR Webinar] Bridging Data & Publications: Unlocking HEAL Research for Greater Impact

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Effective data packaging critically enables research data structuring, discoverability, and reuse, aligning with the NIH HEAL Initiative’s goals. This webinar will cover best practices across the research lifecycle stages, focusing on repository requirements
 and FAIR data principles.</div>
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<span style="font-weight:700">Meet the Speakers:</span>&nbsp;</div>
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<div style="direction:ltr; line-height:1.38; margin-top:0pt; margin-bottom:0pt">Sarah Myer, MPH, MCHES–from the HEAL Stewards–will explain how structured data supports pain and addiction research, collaborations, and secondary data reuse, highlighting the importance
 of metadata in discoverability</div>
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<div style="direction:ltr; line-height:1.38; margin-top:0pt; margin-bottom:0pt">Brienna Larrick, PhD, PMP–from the HEAL Platform–will outline key data package components, including file types, preferred formats, and mapping variables to standards like Common
 Data Elements (CDEs).</div>
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This session will include HEAL-specific successful data submission examples and a live Q&amp;A, addressing data packing challenges. Attendees will also gain access to key resources, including:</div>
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<div style="direction:ltr; line-height:1.38; margin-top:0pt; margin-bottom:0pt">Data Curation Costs for Submitting</div>
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<div style="direction:ltr; line-height:1.38; margin-top:0pt; margin-bottom:0pt">The ICPSR Guide to Social Science Data Preparation and Archiving (6th ed.)</div>
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<div style="direction:ltr; line-height:1.38; margin-top:0pt; margin-bottom:0pt">The NIH Pragmatic Trials Collaboratory Living Notebook</div>
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Effective data packaging critically enables research data structuring, discoverability, and reuse, aligning with the NIH HEAL Initiative’s goals. This webinar will cover best practices across the research lifecycle stages, focusing on repository requireme

[Fresh FAIR Webinar] Essential Elements for Sharing a Data Package

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Collective Board Meeting Summary:&nbsp;The meeting was used to 1) discuss member feedback on challenges associated with data deposition in more detail, 2) collect input on the Platform team’s Data Sharing Guidance, and 3) assess the usefulness and best means of
 sharing examples from HEAL data packages. Members felt the Data Sharing Guidance and HEAL data packaging examples will be helpful. Data packaging challenges are wide-ranging, and one key point was that researchers should include context in narrative form about
 how the research was performed, highlighting anomalies such as missing data due to contractual limitations or special circumstances during the study that impacted the data.</div>
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Collective Board Meeting Summary: The meeting was used to 1) discuss member feedback on challenges associated with data deposition in more detail, 2) collect input on the Platform team’s Data Sharing Guidance, and 3) assess the usefulness and best means o

[Collective Board Meeting] Data Packaging Guidance and Resources

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<p class="MsoNormal">Make 2025 the year you excel on your HEAL data journey! The HEAL Checklist Status Tracker is your personalized tool to help you navigate the HEAL PI Checklist - your ultimate resource for staying on track with data sharing requirements.
 This office hours is a chance to learn where you are, what your next steps are, and get any help you need to conquer them. Make it your New Year’s resolution to complete the checklist, and hit your milestones! Attend this open-format office hour to discuss
 where you are in the process, get guidance on your next steps, and receive hands-on support from the HDE team. Let’s make this the year of the HEAL PI Checklist together!</p>
<p class="MsoNormal">&nbsp;</p>
<p class="MsoNormal">Ann Poduri (Deputy Director, NINDS) will open the session by emphasizing the importance of data sharing, active HEAL Data Ecosystem (HDE) participation, and the HEAL PI Checklist. Following Ann’s call to action, Jessica Mazerik (Program
 Director, HEAL Data Ecosystem) will provide a brief overview of the HDE and highlight how the PI Checklist can help you meet your requirements by consolidating essential tasks and resources in one place. Members of the HDE team will answer questions, discuss
 where you are in the checklist, and guide you through any challenges you’re facing, so you can hit the ground running this year.</p>
<p class="MsoNormal">&nbsp;</p>
<p class="MsoNormal">After the overview, we’ll open small, informal breakout rooms, where you can ask questions, share challenges, or let us know what assistance you need. Topics might include using the right repository, registering your study on the HEAL Data
 Platform and completing the CEDAR form registration, data sharing, and completing other HEAL PI Checklist steps. Bring your questions, and your goals; we’re here to help you start strong!</p>
<p class="MsoNormal">&nbsp;</p>
<p class="MsoNormal">Let’s work together to make 2025 the most productive year yet on your HEAL data sharing journey!</p>
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Make 2025 the year you excel on your HEAL data journey! The HEAL Checklist Status Tracker is your personalized tool to help you navigate the HEAL PI Checklist - your ultimate resource for staying on track with data sharing requirements. This office hours 

[HEAL Office Hours] New Year, Clear Path: HEAL Data Ecosystem Office Hours

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<span style="font-size:11pt">As a HEAL Investigator, we understand there are many data sharing requirements to meet -&nbsp; but don’t worry! The HEAL Data Ecosystem teams (the HEAL Stewards and HEAL Platform) are here to guide you every step of the way. In this
 Fresh FAIR tutorial, we dove into resources available to support you on your data sharing journey.</span></p>
<p style="margin:0in; font-family:Aptos,sans-serif; font-size:12pt"><span style="font-size:11pt">&nbsp;</span></p>
<p style="margin:0in; font-family:Aptos,sans-serif; font-size:12pt"><span style="font-size:11pt">This session is perfect for newly awarded researchers looking to familiarize themselves with the early stages of the HEAL PI checklist and for investigators actively
 working through the checklist who have specific questions.&nbsp;</span></p>
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<span style="font-size:11pt">Liezl Mae Fos (HEAL Stewards) and Sara Volk de Garcia (HEAL Platform) guide you through complementary resources designed to support researchers working through the HEAL PI checklist. Liezl Mae Fos walks&nbsp;through the specialized resources
 offered by HEAL Stewards, while Sara Volk de Garcia showcases the Platform’s resources, ensuring comprehensive guidance from both teams.</span></p>
<p style="margin:0in; font-family:Aptos,sans-serif; font-size:12pt"><span style="font-size:11pt">&nbsp;</span></p>
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<span style="font-size:11pt">After the presentations, participants chose one of two breakout rooms based on which PI Checklist resource they liked to explore further. Questions were added to the
</span><span style="font-size:11pt; color:blue"><u><a href="https://bit.ly/HEALEasyRetro_Nov21" id="OWA653d9743-ef00-1aac-8502-5e8d6d592809" class="OWAAutoLink" style="color:blue; margin-top:0px; margin-bottom:0px">EasyRetro board</a></u></span><span style="font-size:11pt">&nbsp;and
 were prioritized during the breakout rooms according to participant vote prior to the meeting. For instructions on EasyRetro, please
</span><span style="font-size:11pt; color:blue"><u><a href="https://docs.google.com/document/d/1SpecTNFpRpj18xsUqIsyE7J0Itg1KRAPzAu73NQgrQU/edit?usp=sharing" id="OWAfc6c7389-61c4-4562-44d6-6ea33b5f6436" class="OWAAutoLink" style="color:blue; margin-top:0px; margin-bottom:0px">visit
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As a HEAL Investigator, we understand there are many data sharing requirements to meet -  but don’t worry! The HEAL Data Ecosystem teams (the HEAL Stewards and HEAL Platform) are here to guide you every step of the way. In this Fresh FAIR tutorial, we dov

[Fresh FAIR Webinar] HEAL Toolkit: Empowering Investigators with Data Sharing Resources

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Collective Board Meeting Summary:&nbsp;Researchers don’t view data, protocols or code as products of their research, and the barrier to change that entrenched culture is very high. We need an education campaign above all else. NIH and others need to really push
 this. Fortunately, once someone has done it correctly once, they will continue doing it. Investigators need very explicit language to use for citing data, software, etc., as well as examples. The timing of publishing can also present a challenge. Investigators
 may still be doing data curation and analysis after the project period of the grant has ended; it is difficult to deposit data supporting published findings when it is not yet clear what exactly will be published. Work on raw data may also continue after a
 study is over, particularly if the data is especially valuable. How do investigators manage data that may change over time? De-identification can also be a barrier to data sharing. Despite NIH guidelines, it is very common that investigators don’t know what
 they can or should share.</div>
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Collective Board Meeting Summary: Researchers don’t view data, protocols or code as products of their research, and the barrier to change that entrenched culture is very high. We need an education campaign above all else. NIH and others need to really pus

Connecting your FAIR data to your pub

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As a HEAL Investigator, your study is subject to specific data sharing requirements, but have no fear–we are here to help you understand the nuances of when and what to share and how they apply to your study. Join us for our next Fresh FAIR Tutorial to learn
 the basics of the NIH HEAL data management and sharing requirements, plus hear from repository representatives on requirements for different types of data.&nbsp;</div>
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The tutorial will begin with a presentation from HEAL Steward Sarah Myer walking participants through HEAL-related data sharing requirements, followed by lightning talks from HEAL-compliant repository representatives sharing specifics around how to share different
 types of data, including sensitive data. Participants will then have the option to join two breakout rooms based on your study's required level of data sharing: 1) standard requirements for packaging data to deposit into a repository, and 2) requirements for
 submitting summary/aggregate&nbsp;data to a repository. Add questions on this <a href="https://bit.ly/HEALEasyRetro_Oct17" title="https://bit.ly/HEALEasyRetro_Oct17">
EasyRetro board</a>&nbsp;(<a href="http://bit.ly/HEALEasyRetro_Oct17" title="bit.ly/HEALEasyRetro_Oct17">bit.ly/HEALEasyRetro_Oct17</a>) no later than COB Thursday, October 10; make sure to give a thumbs up to any existing questions you want prioritized, as well.&nbsp;</div>
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For instructions on how to use EasyRetro, <a href="https://docs.google.com/document/d/1SpecTNFpRpj18xsUqIsyE7J0Itg1KRAPzAu73NQgrQU/edit?usp=sharing" id="OWAce2c6721-cd2b-dc14-85af-91629ea00b31" class="OWAAutoLink" title="https://docs.google.com/document/d/1SpecTNFpRpj18xsUqIsyE7J0Itg1KRAPzAu73NQgrQU/edit?usp=sharing">
please visit this link</a>.</div>
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<span style="font-weight:700">REGISTER AT </span><span style="color:rgb(17,85,204); font-weight:700"><u><a href="https://bit.ly/HEALFreshFAIR_Oct17" id="OWA42054b3c-9cc6-c097-6184-44e6858cd7ed" class="OWAAutoLink" style="color:rgb(17,85,204)">bit.ly/HEALFreshFAIR_Oct17</a></u></span></div>
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<span style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif">Tags:
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As a HEAL Investigator, your study is subject to specific data sharing requirements, but have no fear–we are here to help you understand the nuances of when and what to share and how they apply to your study. Join us for our next Fresh FAIR Tutorial to le

When & What to Share: Understanding HEAL Data Sharing Requirements

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Collective Board Meeting Summary:&nbsp;Collective Board members were introduced to the NCATS LitCoin project. There was interest in which LLMs were tested and used, and how the LLM was trained to generate assertions from research abstracts. One member commented
 that the quality and utility of the assertions generated was pretty good. Kira showed a beta version of the LitCoin interface and assertion-validation workflow, and members felt the process was intuitive. A member asked how authors would know to go to the
 Platform and validate assumptions for their abstracts, and Kira explained the LitCoin team is working with publishers with the goal of making this workstream part of the standard publishing pipeline. Currently, LitCoin is pulling abstracts from PubMed. In
 the future, authors can enter their own abstracts.</div>
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Collective Board Meeting Summary: Collective Board members were introduced to the NCATS LitCoin project. There was interest in which LLMs were tested and used, and how the LLM was trained to generate assertions from research abstracts. One member commente

PT  LitCoin

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Are you a HEAL investigator wondering if you’ve chosen the right repository for your data? Join us for our next
<i>Fresh FAIR </i>Tutorial to learn the basics of repository selection and hear firsthand accounts of choosing and submitting data to HEAL-compliant repositories. The meeting will begin with a presentation from HEAL Steward Allie Gartland-Gray walking participants
 through how and when to decide on a HEAL-compliant repository, followed by lightning talks from HEAL Investigators Dr. Jonathan Greenberg and Valerie Bradley sharing their experiences with repository selection and data deposition into Vivli and NAHDAP, respectively.
 Participants will then have the option to join two breakout rooms divided by chosen (or likely) repository type: 1) study teams planning to deposit data into a generalist repository, and 2) study teams planning to deposit data into a domain-specific repository.
 Add questions on this <a href="https://bit.ly/EasyRetro_Sept19"><b>EasyRetro board</b></a>
<b>(</b><a href="https://bit.ly/EasyRetro_Sept19"><b>bit.ly/EasyRetro_Sept19</b></a><b>)
</b>no later than <b>COB Thursday, September 12</b>; make sure to thumbs up any existing questions you want prioritized, as well.&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">For instructions on how to use EasyRetro, please
<a href="https://docs.google.com/document/d/1SpecTNFpRpj18xsUqIsyE7J0Itg1KRAPzAu73NQgrQU/edit?usp=sharing">
visit this link</a>.&nbsp;</span></p>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Tags: public, tutorial, data sharing, FAIR data, repository, repositories
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Are you a HEAL investigator wondering if you’ve chosen the right repository for your data? Join us for our next Fresh FAIR Tutorial to learn the basics of repository selection and hear firsthand accounts of choosing and submitting data to HEAL-compliant r

Where to Share: Using the Right Repository for Your HEAL Data

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Collective Board Meeting Summary: The Platform team presented three HEAL Data Platform use cases. Members proposed an additional use case–researchers looking for information to support their grant application (e.g., information to support power calculations
 and enrollment requirements). Desired search and filter functionality was also discussed. Member suggestions included being able to search by data type and study technique/methodology, more granular categories of pain (e.g., chronic vs acute), and body part
 or region.</div>
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Collective Board Meeting Summary: The Platform team presented three HEAL Data Platform use cases. Members proposed an additional use case–researchers looking for information to support their grant application (e.g., information to support power calculatio

Platform Search & Filter

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Are you a HEAL investigator with an award ending soon, or just getting started, and wondering how to get your data ready to share? Join the HEAL Stewards and
 HEAL Platform team for the next <i>Fresh FAIR </i>tutorial for hands-on guidance on how to share study data! The meeting will begin with a presentation from HEAL Stewards Co-PI Dr. Kira Bradford highlighting HEAL data sharing requirements, the importance of
 FAIR data sharing, and data packaging options. Participants will then have the option to join two breakout rooms divided by award stage: 1) Investigators with awards ending this year and next year, and 2) newly awarded investigators. Add questions on this
<a href="https://bit.ly/EasyRetro_Jul18"><b>EasyRetro board</b></a> <b>(</b><a href="https://bit.ly/EasyRetro_Jul18"><b>bit.ly/EasyRetro_Jul18</b></a><b>)
</b>no later than <b>COB Thursday, July 11</b>; make sure to thumbs up any existing questions you want prioritized, as well. This will help us tailor the tutorials to participant needs and address common questions.</span></p>
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For instructions on how to use EasyRetro, please <a href="https://docs.google.com/document/d/1SpecTNFpRpj18xsUqIsyE7J0Itg1KRAPzAu73NQgrQU/edit?usp=sharing">
visit this link</a>.</span></p>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Tags: public, tutorial, data sharing, FAIR data, FAIR, Platform</span></p>
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Are you a HEAL investigator with an award ending soon, or just getting started, and wondering how to get your data ready to share? Join the HEAL Stewards and HEAL Platform team for the next Fresh FAIR tutorial for hands-on guidance on how to share study d

Fresh FAIR Tutorial: Getting Your Data Ready to Share

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<p class="MsoNormal">Collective Board Meeting Summary: Two alumni members joined the meeting which focused again on the peer-to-peer thought piece. The proposed timeline to develop and submit the manuscript was presented and generally seen as acceptable. Target
 journal options were discussed using an EasyRetro board for collecting input. Finally, members asked clarifying questions and shared thoughts and insights.</p>
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Collective Board Meeting Summary: Two alumni members joined the meeting which focused again on the peer-to-peer thought piece. The proposed timeline to develop and submit the manuscript was presented and generally seen as acceptable. Target journal option

Peer-to-Peer Piece: Timeline & Journal

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Are you a HEAL investigator wondering how to get your study up-to-speed with
<a href="https://heal.nih.gov/data/complying-heal-data-sharing-policy">HEAL data sharing requirements</a>? Are you confused about how the HEAL Data Ecosystem (HDE) support teams can help? Join us for the first-ever
<i>Fresh FAIR </i>tutorial for clarification on these questions, as well as others you may have around HEAL data sharing requirements and available support. Add questions on this
<a href="https://easyretro.io/publicboard/DMjA2iiPFHbrkTjvyzl6JYhz6q43/890f8047-924c-4aa9-b48f-bf3004417e0e">
<b>EasyRetro board</b></a> <b>(</b><a href="https://bit.ly/EasyRetro_Jun20"><b>bit.ly/EasyRetro_Jun20</b></a><b>)</b> no later than
<b>COB Thursday, June 13</b>; make sure to thumbs up any existing questions you want prioritized, as well. This will help us tailor the tutorials to participant needs and address common questions.</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">This tutorial series will be interactive, letting participants directly connect with the HDE support teams. The meeting will begin with a presentation from HDE
 Program Director Dr. Jessica Mazerik on overall HDE goals, followed by presentations from the HEAL Platform team and HEAL Stewards on services offered. Next, each team will host a breakout room for questions and assistance on: 1) HEAL Platform registration
 and CEDAR study-level metadata submission (HEAL Platform team), and 2) repository selection and data sharing (HEAL Stewards).
</span></p>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Tags: public, tutorial, data sharing, FAIR data, FAIR, Platform, repositories, repository, requirements</span></p>
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Are you a HEAL investigator wondering how to get your study up-to-speed with HEAL data sharing requirements? Are you confused about how the HEAL Data Ecosystem (HDE) support teams can help? Join us for the first-ever Fresh FAIR tutorial for clarification 

Fresh FAIR Tutorial: Hands-on HEAL Data Sharing Requirement Guidance

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<p class="MsoNormal">Collective Board Meeting Summary: The meeting focused on a potential member-authored peer-to-peer thought piece on what it means to be part of a data ecosystem. Discussion included the paper’s intended key takeaways, what would make this
 paper unique, how to incorporate member contributions, and authorship. Members received an outline in advance of the meeting. They provided feedback, shared their interest and ability to participate, and emphasized the importance of including use cases to
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Collective Board Meeting Summary: The meeting focused on a potential member-authored peer-to-peer thought piece on what it means to be part of a data ecosystem. Discussion included the paper’s intended key takeaways, what would make this paper unique, how

A Potential Peer-to-Peer Piece: Outline

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Dr. Nora Volkow, Director of the National Institute on Drug Abuse (NIDA) at NIH, joins us for the May 16 Fresh FAIR webinar. The webinar will highlight the importance
 of sharing data by depositing into HEAL-compliant repositories and provide guidance and resources to help investigators through the process. Dr. Volkow will begin the webinar with a call-to-action for HEAL investigators to participate in the HEAL Data Ecosystem
 and deposit data into repositories, emphasizing the immediate and long-term benefits across the HEAL community. Next, HEAL Steward Allie Gartland-Gray will present an updated list of HEAL-compliant repositories, the new HEAL Repository Selection Quiz, and
 how the HEAL Stewards can help with repository selection. HEAL Platform team member Dr. Brienna Larrick will follow with an overview of how the HEAL Platform interacts with repositories to provide a central hub for searching across HEAL data. The presentations
 will be followed by a live Q&amp;A.</span></p>
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<b><span style="font-family:'Verdana',sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b></p>
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<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Nora D. Volkow, M.D., is Director of the National Institute on Drug Abuse (NIDA) at the National Institutes of Health. NIDA is the world’s largest funder of research on the health aspects of drug
 use and addiction. Dr. Volkow’s work has been instrumental in demonstrating that drug addiction is a brain disorder. As a research psychiatrist, Dr. Volkow pioneered the use of brain imaging to investigate how substance use affects brain functions. In particular,
 her studies have documented that changes in the dopamine system affect the functions of frontal brain regions involved with reward and self-control in addiction. She has also made important contributions to the neurobiology of obesity, ADHD, and aging.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Allie Gartland-Gray, M.P.S., is a Research Data Analyst in the Research Computing Division at RTI International. She has experience in data collection, management, and storage, and has six years
 of experience working in the field of health informatics in a combination of both academic and professional settings. Her educational background is in biology and biomedical health and informatics, and she leverages this knowledge as a HEAL Steward to help
 develop tools and guidance for research data governance, curation, and deposition.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Brienna Larrick, Ph.D., P.M.P., is a Senior Scientific Project Manager at the University of Chicago Center for Translational Data Science. With 8 years of scientific program and project management
 experience in the nonprofit and academic sectors, Dr. Larrick serves as Project Manager of the HEAL Data Platform. Her background is in preclinical research, focusing on cellular and animal models of metabolic chronic disease.</span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Tags: public, webinar, data sharing, FAIR data, FAIR, repositories, repository</span></p>
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Dr. Nora Volkow, Director of the National Institute on Drug Abuse (NIDA) at NIH, joins us for the May 16 Fresh FAIR webinar. The webinar will highlight the importance of sharing data by depositing into HEAL-compliant repositories and provide guidance and 

Sharing Data in HEAL-compliant Repositories: Requirements and Guidance

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">This month’s
<i>Fresh FAIR </i>webinar will highlight the transformative power of standardized metadata sharing, particularly variable-level metadata (VLMD), through real HEAL Data Ecosystem (HDE) examples. HEAL Steward Liezl Mae Fos will kick off the webinar with a ‘crash
 course’ in metadata, followed by lightning talks from HDE Program Officer Anthony Juehne on the importance of VLMD in facilitating open science throughout the HDE; HEAL Platform team member Phil Schumm on how VLMD supports discovery on the HEAL Data Platform;
 HEAL Steward Suparna Goswami on how VLMD drives HEAL Semantic Search; and Utah HEAL CDE team lead Kathy Sward on how Common Data Elements (CDEs) can assist with harmonizing VLMD. Participants will also learn about resources relevant to sharing metadata. The
 lightning talks will be followed by a live Q&amp;A.</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p style="margin:0in; background:white; font-variant-caps:normal; orphans:auto; text-align:start; widows:auto; background-size:auto; background-origin:padding-box; background-clip:border-box; background-attachment:scroll; word-spacing:0px">
<b><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b></p>
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<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Liezl Mae Fos, MS, is a HEAL Steward in the Data Management Group at RENCI. Fos has 5 years of experience working in both industry-led and academia-focused clinical research trials. Working previously
 for a large contract research organization, she was involved in the management of several study sites within a given trial, ensuring that proper documentation and clinical procedures were followed. She has worked closely with PIs to ensure that study visits
 and other study-related tasks run smoothly and efficiently during her time as clinical research coordinator for a medical university. As a HEAL Steward, Fos integrates her background to support investigators in the HEAL ecosystem by providing guidance and
 strategy for data management.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Anthony Juehne, MPH, is a Program Officer for the HEAL Data Ecosystem as part of the<a href="https://heal.nih.gov/"> NIH HEAL Initiative</a>®. Juehne has over fifteen years of experience within
 the field of healthcare informatics. He has published best practices for conducting and reporting health research to enhance reproducibility, transparency, and accessibility.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Phil Schumm, MS, is the Director of Biostatistics and Statistical Computing in the Center for Translational Data Science at the University of Chicago. He has served as technical director for numerous
 Data Coordinating Centers, including the NIDDK-funded Inflammatory Bowel Disease Genetics Consortium and the International IBD Genetics Consortium for which he has led development of a Data Commons. He is Co-PI (with Robert Grossman) of the HEAL Data Platform
 and co-leads the Data and Analytic Support Core for the NIDA-funded Justice Community Opioid Innovation Network (JCOIN).</span></li><li class="MsoListParagraph" style=""><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black; background:white">Suparna Goswami, PhD, is a Senior Research Scientist at RENCI and a co-lead of the Community Data Standards and Knowledge Graph
 Search Group for the NIH HEAL Data Stewardship Group. Goswami has several years of research experience in the areas of innovation management, user experience research, quantitative research methods; and in leading interdisciplinary, multi-institutional research
 projects. In addition to her academic background, Goswami has years of industry experience in the development and implementation of large scale multi-organizational information technology systems. She has published in premium journals and conferences in the
 areas of information systems management and computer human interaction.</span></li><li class="MsoListParagraph" style=""><span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Kathy Sward, PhD, RN, FAAN, is a Professor in Nursing with joint appointment as a Professor in Biomedical Informatics at the University of Utah and is an
 investigator at the Utah Data Coordinating Center specializing in clinical research informatics. She has extensive experience with informatics to support multi-center trials. She is MPI for the Utah HEAL-ERN Data Coordinating Resource Center (DCRC), Co-Investigator
 for the Collaborative Pediatric Critical Care Research Network (CPCCRN), and leads the Utah HEAL CDE team.</span></li></ul>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Tags: public, webinar, data sharing, FAIR data, FAIR, metadata, variable-level metdata</span></p>
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This month’s Fresh FAIR webinar will highlight the transformative power of standardized metadata sharing, particularly variable-level metadata (VLMD), through real HEAL Data Ecosystem (HDE) examples. HEAL Steward Liezl Mae Fos will kick off the webinar wi

Metadata 103: Standardized Sharing for Reusability & Discovery

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<p class="MsoNormal">Collective Board Meeting Summary: The HEAL Connections Team presented background on their Sharing Series, Cultural Responsiveness Researcher Guidebook, and overall program. Each presentation was followed by a set of discussion questions.
 Member feedback was limited and general in nature, such as wanting to know when in the research lifecycle studies should engage with the Connections Team. One member working with the Hispanic/Latinx population thought the Cultural Responsiveness Guidebook
 would be very helpful, and another member thought it would be helpful for study recruiters focused on under-represented communities.</p>
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Collective Board Meeting Summary: The HEAL Connections Team presented background on their Sharing Series, Cultural Responsiveness Researcher Guidebook, and overall program. Each presentation was followed by a set of discussion questions. Member feedback w

The HEAL Connections Team

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">FAIR research publication advances reproducibility and data reuse for collaborative discovery and innovation, which is critical for the
<a href="https://heal.nih.gov/">NIH HEAL Initiative</a><sup>®</sup>’s goal to urgently stem the national pain and opioid use disorder public health crises. In this month’s
<i>Fresh FAIR </i>webinar, HEAL Data Ecosystem Program Officer Anthony Juehne will emphasize the importance of FAIR research publication in HEAL, along with best practices and examples of how to package data associated with a publication. The webinar will then
 feature lightning talks from Drs. Bruce Young, Songthip Ounpraseuth, and Shamsuddin “Shams” Bhuiyan highlighting their experiences maximizing the impact of their publications by sharing data. Participants will also learn about relevant resources available
 to HEAL investigators. The webinar will conclude with a live Question and Answer session featuring presenters, as well as Dr. Brian Smith.</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p style="margin:0in; background:white; font-variant-caps:normal; orphans:auto; text-align:start; widows:auto; background-size:auto; background-origin:padding-box; background-clip:border-box; background-attachment:scroll; word-spacing:0px">
<b><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b></p>
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<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Anthony Juehne, MPH, is a Program Officer for the HEAL Data Ecosystem as part of the NIH HEAL Initiative®. Juehne has over fifteen years of experience within the field of healthcare informatics.
 He has published best practices for conducting and reporting health research to enhance reproducibility, transparency, and accessibility.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Bruce Young, PhD, is a senior fellow with NORC at the University of Chicago in the Public Health department. He has over 29 years of experience in applied research, field experiments, and statistical
 analysis. His work includes multi-method approaches using nationally representative household panels; organizational surveys with service providers, jails, and law enforcement; and the collection of survey and biospecimen data. He is a Co-investigator for
 the Justice Community Opioid Innovation Network’s (JCOIN) Methodology Center (MAARC) analyzing the effectiveness of the JCOIN network’s 11 clinical research centers testing medicated assisted treatments for opioid use disorder.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Songthip Ounpraseuth, PhD, is a Professor in the Department of Biostatistics at the University of Arkansas for Medical Sciences (UAMS). His research interests include pediatric clinical trials,
 computational statistics, prediction error estimation, dimension reduction &amp; classification, and selection bias. He is an investigator for the study, “Identifying Quality Indicators for Substance Use Disorders,” and co-author of the publication, “Eat, Sleep,
 Console Approach or Usual Care for Neonatal Opioid Withdrawal.”</span></li><li class="MsoListParagraph" style=""><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black; background:white">Shamsuddin “Shams” Bhuiyan, PhD, is a postdoctoral fellow at the Renthal lab at Harvard Medical School and Brigham and Women’s
 Hospital. He studies the evolution of peripheral nervous system cell types. Prior to joining the Renthal Lab, he received his PhD in Bioinformatics at the University of British Columbia under the supervision of Dr. Paul Pavlidis.</span><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"></span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Tags: public, webinar, data sharing, FAIR data, FAIR, publication</span></p>
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FAIR research publication advances reproducibility and data reuse for collaborative discovery and innovation, which is critical for the NIH HEAL Initiative®’s goal to urgently stem the national pain and opioid use disorder public health crises. In this mo

FAIR-ly Sharing HEAL Data: Maximizing the Power of Publication

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<p class="MsoNormal">Collective Board Meeting Summary: Members discussed challenges facing HEAL Data Ecosystem development on the study- and data-specific levels as well as at the conceptual level. It is a complex system, and there is a lot of confusion among
 researchers about what it means to be part of a data network. Investigators don’t know what data needs to be shared and which steps need to be done at what point in the research process.</p>
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Collective Board Meeting Summary: Members discussed challenges facing HEAL Data Ecosystem development on the study- and data-specific levels as well as at the conceptual level. It is a complex system, and there is a lot of confusion among researchers abou

A Potential Peer-to-Peer Piece

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<p style="margin:0in"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">The 5<sup>th</sup> Annual NIH HEAL Initiative® Scientific Meeting was held February 7-8, 2024. It included more than 800 participants from across the NIH HEAL
 Initiative®, including community members. The HEAL Data Platform, HEAL Stewards, and HEAL Connections teams ran the HEAL Data Ecosystem booth and participated in the event’s poster sessions. A report highlighting metrics and key takeaways from in-person engagement
 with investigators is being developed and will be linked here once finalized.</span></p>
<p style="margin:0in"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p style="margin:0in"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">The HEAL Data Ecosystem booth featured members who assisted and encouraged attending investigators to register their studies on the HEAL Data Platform, complete
 their CEDAR study-level metadata forms, select HEAL-compliant repositories, submit their studies’ data dictionaries, and plan for research dissemination and community engagement. A prize raffle was held for those who registered on the Platform and submitted
 their CEDAR form, with additional entries provided for those who selected a HEAL-compliant repository or submitted a data dictionary by Friday, February 9, 2024 at 11:59pm HST. We’d like to congratulate the winning studies listed below:
</span></p>
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<li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP00500/"><span style="color:#A6126A">NIDA Clinical Trials Network: Greater
 New York Node</span></a></span></u></b><b><u></u></b></li><li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP00916/"><span style="color:#A6126A">Treating Polysubstance Use in Methadone
 Maintenance: Application of Novel Digital Technology</span></a></span></u></b><b><u></u></b></li><li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP01029/"><span style="color:#A6126A">From Nerve to Brain: Toward a Mechanistic
 Understanding of Spinal Cord Stimulation in Human Subjects</span></a></span></u></b><b><u></u></b></li><li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP00946/"><span style="color:#A6126A">Partners for Pain &amp; Wellbeing Equity:
 A Randomized Trial of Community Supported Complementary and Integrative Health Self Management for Back Pain</span></a></span></u></b><b><u></u></b></li><li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP00018/"><span style="color:#A6126A">A novel therapeutic to ameliorate chronic
 pain and reduce opiate use</span></a></span></u></b><b><u></u></b></li><li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP01178/"><span style="color:#A6126A">Onsite PTSD Treatment to Improve MOUD
 Outcomes (OPTIMO): a hybrid Type 1 effectiveness-implementation trial of harm reduction PTSD care at syringe service programs</span></a></span></u></b><b><u></u></b></li><li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP00576/"><span style="color:#A6126A">An Internet-based Program to Help Cancer
 Survivors Manage Pain (IMPACTS)</span></a></span></u></b><b><u></u></b></li><li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP00326/"><span style="color:#A6126A">Development of a 3-month implantable
 depot pellet of Naltrexone for the treatment of Opioid Use Disorder</span></a></span></u></b><b><u></u></b></li><li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP00922/"><span style="color:#A6126A">Electrophysiological and ultrasound
 quantitative biomarkers for myofascial pain</span></a></span></u></b><b><u></u></b></li><li class="MsoNormal" style="color:#A6126A; margin-bottom:6.0pt"><b><u><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://healdata.org/portal/discovery/HDP00975/"><span style="color:#A6126A">Rapid Actionable Data for Opioid Response
 in Kentucky (RADOR-KY)</span></a></span></u></b><b><u></u></b></li></ul>
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The 5th Annual NIH HEAL Initiative® Scientific Meeting was held February 7-8, 2024. It included more than 800 participants from across the NIH HEAL Initiative®, including community members. The HEAL Data Platform, HEAL Stewards, and HEAL Connections teams

HEAL Data Ecosystem at the 5th Annual HEAL Scientific Meeting

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<p style="margin:0in"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Contrary to popular belief, researchers working with intellectual property, at-risk populations, or other sensitive data types can still contribute to open science.
 Sharing sensitive data thoughtfully is critical to advancing many important areas of research, including
<span style="background:white">the </span></span><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"><a href="https://heal.nih.gov/"><span style="color:#1155CC">NIH HEAL Initiative</span></a></span><sup><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">®</span></sup><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black; background:white">’s
 effort to urgently stem the national pain and opioid use disorder public health crises.&nbsp;</span><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"></span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif">&nbsp;</span></p>
<p style="margin:0in"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">This month’s
<i>Fresh FAIR </i>webinar will feature HEAL Steward Liezl Mae Fos introducing unique and less commonly addressed sensitive data types in HEAL research, followed by lightning talks from Drs. Bridget Freisthler, Elizabeth D’Amico, and Luana Colloca presenting
 how they have considered and made decisions around sharing results when working with sensitive data. Participants will also learn about resources relevant to sharing sensitive data. The webinar will conclude with a live Question and Answer session featuring
 presenters, as well as Drs. Daniel Dickerson and Anthony Juehne.&nbsp;</span><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"></span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
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<b><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b></p>
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<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Liezl Mae Fos, MS, is a HEAL Steward in the Data Management Group at RENCI. Fos has 5 years of experience working in both industry-led and academia-focused clinical research trials. Working previously
 for a large contract research organization, she was involved in the management of several study sites within a given trial, ensuring that proper documentation and clinical procedures were followed. She has worked closely with PIs to ensure that study visits
 and other study-related tasks run smoothly and efficiently during her time as clinical research coordinator for a medical university. As a HEAL Steward, Fos integrates her background to support investigators in the HEAL ecosystem by providing guidance and
 strategy for data management.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Bridget Freisthler, PhD, is a Professor in the College of Social Work at Ohio State University and the Principal Investigator of the HEALing Communities Study in Ohio. Dr. Freisthler’s research
 focuses on how situation, social, and location characteristics affect the use of child abuse and neglect. Specifically, she is interested in how microcontexts (e.g., where a person is during a particular event) shape behavior, such as parenting or substance
 use. These microcontexts might include where and with whom parents drink alcohol, use marijuana, or experience higher levels of stress; all of these may affect parenting behaviors. The goal of this research is to design, implement, and evaluate intervention
 strategies that reduce substance misuse and child abuse and neglect. Dr. Freisthler will speak about her experience sharing sensitive private/administrative data in a HEAL-funded study.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Elizabeth D'Amico, PhD, is a senior behavioral scientist at the RAND Corporation and a licensed clinical psychologist. Dr. D'Amico is nationally recognized for her work developing, implementing,
 and evaluating interventions for adolescents and young adults. She has grants focused on prevention for substance use for urban Native American adolescents and young adults that integrate motivational interviewing with traditional practices, such as beading
 and Native American cooking. She is currently conducting a large clinical trial to address suicide prevention among Alaska Native young people in Alaska. Dr. D'Amico will speak about her experience sharing sensitive data in a HEAL-funded study working with
 tribal communities.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Luana Colloca, MD, PhD, MS, is a Professor in Pain and Translational Symptom Science and Director of the Placebo Beyond Opinions Center at the University of Maryland School of Nursing. Dr. Colloca
 has conducted pioneering groundbreaking studies that have advanced scientific understanding of the psychoneurobiological bases of endogenous systems for pain modulation in humans. As a result, Dr. Colloca has developed an international reputation as a leading
 scientist for advancing knowledge of the neurobiological mechanisms of placebo and nocebo effects with a multifaceted approach including psychopharmacological, neurobiological, and behavioral approaches. Her research has been published in top-ranked international
 journals including Biological Psychiatry, Pain, JAMA, NEJM, and Lancet Neurology. Dr. Colloca will speak about her experience sharing sensitive genomic data in a HEAL-funded study.</span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Tags: public, webinar, data sharing, FAIR data, FAIR, &nbsp;open science, sensitive data</span></p>
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Contrary to popular belief, researchers working with intellectual property, at-risk populations, or other sensitive data types can still contribute to open science. Sharing sensitive data thoughtfully is critical to advancing many important areas of resea

A Thoughtful Approach to Open Science: Sharing Sensitive HEAL Data

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Collective Board Meeting Summary: Breakout rooms with member pairs were used twice to give members a chance to get to know one another. Member pairs were asked to share in their words what the HDE is, then Kira gave a presentation including an HDE overvie

HEAL Data Ecosystem in Focus

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<p class="MsoNormal">Collective Board Meeting Summary: Collective Board members shared ideas, success factors, opportunities and challenges associated with a potential HEAL Stewards Fellows program. The proposed goal of the Fellows program was to promote data
 sharing by HEAL studies, with the long-term goal of developing secondary analysis use cases. The fundamental challenge of low uptake of secondary data analysis across the industry was a topic of discussion. Identifying a HEAL-specific need or research question
 and datasets that could address it was supported as the way to catalyze secondary analysis. The time required by the study team to mentor a fellow is a key success factor and potential challenge.</p>
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Collective Board Meeting Summary: Collective Board members shared ideas, success factors, opportunities and challenges associated with a potential HEAL Stewards Fellows program. The proposed goal of the Fellows program was to promote data sharing by HEAL 

A HEAL Fellows Program

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Enabling collaborative, rapid advancements is the promise of open science. This kind of pivotal shift in research is particularly significant for the
<a href="https://heal.nih.gov/">NIH HEAL Initiative</a><sup>®</sup>’s goal to urgently accelerate discovery of treatments for pain and opioid use disorders. In collaboration with the HEAL Connections team, this month’s
<i>Fresh FAIR </i>webinar will highlight the importance of open science through examples of how sharing results and data can positively impact communities and spur further research discovery. Dr. Jessica Mazerik will kick off with an introduction to open science,
 followed by lightning talks from Dr. Sarah Woods and Dr. Rachel Wightman detailing their experiences reusing or synthesizing data to inform “on the ground” work, decisions, and policies. HEAL Stewards’ Liezl Mae Fos and HEAL Connections’ Jennifer Cook will
 then describe how each team helps investigators practice open science, both within and beyond the HEAL Data Ecosystem. The webinar will conclude with a live Question &amp; Answer session.&nbsp;</span></p>
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<b><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b><span style="font-size:12.0pt; color:black"></span></p>
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<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Jessica Mazerik, PhD, is the Program Director for the HEAL Data Ecosystem. Prior to working in the HEAL Initiative, she led workforce activities in the OD/DPCPSI Office of Data Science Strategy
 and served as a special assistant to the NIH Deputy Director, where she focused on artificial intelligence and data science among other activities. She coordinated two prize competitions to develop 3-dimensional retinal tissue models for the National Eye Institute
 (NEI), Office of the Director. </span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Sarah Woods, PhD, LMFT, is an Associate Professor and Vice Chair of Research in the Department of Family and Community Medicine at UT Southwestern Medical Center. She is a licensed marriage and
 family therapist and studies how family relationships get under our skin to impact our physical health. Her current research focuses on explicating psychophysiological stress mechanisms of effect, and integrated behavioral health interventions.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Rachel Wightman, MD is an Associate Professor of Emergency Medicine and Epidemiology at Alpert Medical School of Brown University. She is triple board-certified in medical toxicology, emergency
 medicine, and addiction medicine. She serves as the Director of Toxicology and Addiction Medicine for Brown Emergency Medicine and a Consultant Medical Director at the Rhode Island Department of Health. Her research interests are emerging drug use patterns,
 evaluation of toxicology testing results, and medication management of opioid use disorder.&nbsp; She co-founded the Rhode Island Buprenorphine Hotline, a statewide telehealth low-threshold buprenorphine treatment access line in partnership with RIDOH and BHDDH
 funded by SAMSHA.</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Liezl Mae Fos, MS, is a HEAL Steward in the Data Management Group at RENCI. Fos has 5 years of experience working in both industry-led and academia-focused clinical research trials. Working previously
 for a large contract research organization, she was involved in the management of several study sites within a given trial, ensuring that proper documentation and clinical procedures were followed. She has worked closely with PIs to ensure that study visits
 and other study-related tasks run smoothly and efficiently during her time as clinical research coordinator for a medical university. As a HEAL Steward, Fos integrates her background to support investigators in the HEAL ecosystem by providing guidance and
 strategy for data management.&nbsp;</span></li><li class="MsoListParagraph" style="color:black; margin-top:0in; margin-bottom:0in">
<span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Jennifer Cook, MPH, is an Associate Director in the Research Communications &amp; Engagement team at the Duke Clinical Research Institute within the Duke School of Medicine and a project leader for
 HEAL Connections. She brings more than 25 years of experience in healthcare communications. She has a Master of Public Health degree from the University of North Carolina, Chapel Hill and deep experience with patient and community engagement and academic publications
 that have been cited extensively.</span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Tags: public, webinar, data sharing, FAIR data, FAIR, Connections, open science</span><span style="color:black"></span></p>
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Enabling collaborative, rapid advancements is the promise of open science. This kind of pivotal shift in research is particularly significant for the NIH HEAL Initiative®’s goal to urgently accelerate discovery of treatments for pain and opioid use disord

Advancing Open Science With the HEAL Data Ecosystem

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<p class="MsoNormal">Collective Board Meeting Summary: HEAL Stewards, HEAL Platform, and HEAL Connections collected ideas from members on ways to maximize our impact at the 5th Annual HEAL Investigators Meeting and beyond. Input covered ways to maximize booth
 traffic, effective HEAL Data Ecosystem (HDE) messaging, effective communication methods, attending other conferences attended by HEAL Investigators, and ideas for NIH to reinforce data sharing requirements.</p>
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Collective Board Meeting Summary: HEAL Stewards, HEAL Platform, and HEAL Connections collected ideas from members on ways to maximize our impact at the 5th Annual HEAL Investigators Meeting and beyond. Input covered ways to maximize booth traffic, effecti

Maximizing Impact at Annual PI Meeting

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<p class="MsoNormal">Collective Board Meeting Summary: The Collective Board discussed challenges associated with standardizing CDE implementation across HEAL, and how best practices guidelines would only apply for studies still in the planning phase. For the
 many HEAL studies already underway, the challenge is harmonization across studies using the same CDEs. In both cases–standardizing implementation and harmonizing after data collection, members stressed the considerable difficulty and provided examples of complicating
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Collective Board Meeting Summary: The Collective Board discussed challenges associated with standardizing CDE implementation across HEAL, and how best practices guidelines would only apply for studies still in the planning phase. For the many HEAL studies

Next Step Toward Data Standards for HEAL

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">This month, the
<a href="https://heal.nih.gov/">NIH HEAL Initiative</a><sup>®</sup> is launching HEAL Semantic Search, a powerful additional search tool to complement the
<a href="https://healdata.org/portal/discovery">HEAL Data Platform</a>’s free-text search for finding HEAL studies and datasets.&nbsp;</span></p>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">HEAL Semantic Search will provide researchers with access to Dug, a tool that will allow users to deep dive interactively into HEAL studies alongside related
 biomedical topics, research, and publications in order to identify studies, datasets, and variables that might be related to each other in unexpected ways. These novel relations support the ability to ask unique research questions and identify potential collaborations.&nbsp;</span></p>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">This month’s Fresh FAIR webinar will feature HEAL Stewards Suparna Goswami and Gaurav Vaidya describing how HEAL Semantic Search supports the goals of HEAL researchers
 and providing a demonstration of this new search in action. The webinar will conclude with a live Question and Answer session.&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b></p>
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<li class="MsoListParagraph" style="color:black; margin-left:0in"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Suparna Goswami, PhD, is a Senior Research Scientist at RENCI and a co-lead of the Community Data Standards and Knowledge Graph
 Search Group for the NIH HEAL Data Stewardship Group. Goswami has several years of research experience in the areas of innovation management, user experience research, quantitative research methods; and in leading interdisciplinary, multi-institutional research
 projects. In addition to her academic background, Goswami has years of industry experience in the development and implementation of large scale multi-organizational information technology systems. She has published in premium journals and conferences in the
 areas of information systems management and computer human interaction.</span><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"></span></li><li class="MsoListParagraph" style="color:black; margin-left:0in"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Gaurav Vaidya, PhD, is a Semantic Web Technologist at RENCI and a software developer on HEAL Semantic Search. He works on integrating
 Semantic Search with other HEAL components, such as the HEAL Data Platform and the HEAL CDE repository, and on improving the named entity recognition technology that identifies biomedical concepts in variable names and descriptions. Outside of HEAL, Vaidya
 also works on the NCATS Data Translator project and the FHIRCat project to make it easier for biomedical researchers to tap into semantic knowledge when searching, aggregating, or analyzing biomedical knowledge.</span></li></ul>
<p class="MsoNormal" style="margin-left:.5in; background:white"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Tags: public, webinar, data sharing, FAIR data, FAIR, semantic search, Dug, HEAL Semantic Search, search
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This month, the NIH HEAL Initiative® is launching HEAL Semantic Search, a powerful additional search tool to complement the HEAL Data Platform’s free-text search for finding HEAL studies and datasets.

HEAL Semantic Search will provide researchers with 

Dig Deeper With Dug: Introducing HEAL Semantic Search

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<p class="MsoNormal">Collective Board Meeting Summary: Suparna Goswami presented HEAL Semantic Search, which is being launched at the
<i>Fresh FAIR</i> webinar on Sep. 21. Gaurav Vaidya gave a live demo. Collective Board members asked a number of insightful questions and identified valuable potential enhancements. Members provided important guidance for communicating to investigators what
 HEAL Semantic Search is and what it does. They shared concrete suggestions to help the HEAL Data Ecosystem maximize the collection of variable-level metadata to enable the search tool to provide the greatest utility.</p>
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Collective Board Meeting Summary: Suparna Goswami presented HEAL Semantic Search, which is being launched at the Fresh FAIR webinar on Sep. 21. Gaurav Vaidya gave a live demo. Collective Board members asked a number of insightful questions and identified 

HEAL Semantic Search

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<p class="MsoNormal">Collective Board Meeting Summary: The value of collecting variable-level metadata (VLMD) from HEAL studies was explored. Underlying the discussion was acknowledgement of the diversity of VLMD across HEAL. Members supported VLMD becoming
 a requirement for future awards for studies producing structured data and emphasized the importance of minimizing the burden on investigators. Investigator education is needed early in the study lifecycle to promote best practice for planning and preparing
 study data and metadata.</p>
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Collective Board Meeting Summary: The value of collecting variable-level metadata (VLMD) from HEAL studies was explored. Underlying the discussion was acknowledgement of the diversity of VLMD across HEAL. Members supported VLMD becoming a requirement for 

Variable-Level Metadata Provisioning

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">This month’s Fresh FAIR webinar features Anthony Juehne of the
<a href="https://heal.nih.gov/">NIH HEAL Initiative®</a> presenting best practices for research reproducibility and data reuse throughout the research lifecycle. Juehne will cover the value of enhancing the reusability of data and materials associated with
 research results, recommendations for packaging data and digital assets with a scholarly publication, and the benefits to authors and the scholarly community more broadly. Implementing these recommendations maximizes the collective power of the HEAL Data Ecosystem
 in discovering safe and effective treatments for those suffering from pain and opioid use disorders.
</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Juehne will emphasize how enhancing the reusability of data and materials associated with research results aligns with the mission and vision of the HEAL Data
 Ecosystem and can enhance the impact of research outputs across the pain and addiction research field. The presentation will be followed by a moderated panel discussion and Q&amp;A featuring Dr. Limor Peer of Yale University and Dr. Frank Rockhold of Duke University,
 as well as HEAL Stewards and HEAL Platform representatives.</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b></p>
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<li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Anthony Juehne is a Program Officer for the HEAL Data Ecosystem as part of the NIH HEAL Initiative®. Juehne has over fifteen years of
 experience within the field of healthcare informatics. He has published best practices for conducting and reporting health research to enhance reproducibility, transparency, and accessibility.</span></li></ul>
<p class="MsoNormal" style="margin-left:.5in; background:white"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Tags: public, webinar, data sharing, FAIR data, FAIR, publication, reproducibility, reuse
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This month’s Fresh FAIR webinar features Anthony Juehne of the NIH HEAL Initiative® presenting best practices for research reproducibility and data reuse throughout the research lifecycle. Juehne will cover the value of enhancing the reusability of data a

Advancing Reproducibility and Data Reuse in HEAL: Guidance for Sharing Data Associated With a Publication

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">This month’s Fresh FAIR webinar features Zixin Nie of the HEAL Data Stewardship Group (HEAL Stewards) providing a deeper look into data de-identification, including
 how to determine what data to de-identify and appropriate de-identification methods based on institutional and HIPAA requirements, repository de-identification workflows, and data types. A brief recap of the previous webinar on de-identification will be provided,
 but you can check out the recording here for the full background: <a href="https://youtu.be/s3k-OzfzP5Y">
https://youtu.be/s3k-OzfzP5Y</a>. &nbsp;</span></p>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">De-identification involves removing personal identifying information from datasets so that no single individual can be identified as a study participant. This
 process is a critical step for protecting the privacy of human subjects involved in NIH HEAL Initiative® studies, as well as for defining the reusability of data for further analysis and discovery. Properly de-identifying data will enable accessibility and
 reuse by other researchers via the HEAL Data Platform, thus accelerating discovery around safe and effective treatments for those suffering from pain and opioid use disorders.</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Zixin Nie will close by describing how you can take advantage of HEAL Data Ecosystem resources to assist with the process of de-identification. The presentation
 will be followed by a live Q&amp;A featuring HEAL Stewards and HEAL Platform representatives, as well as Vivian Ota Wang (NIH), Amy Pienta (ICPSR), and Dan Janes (NIMH Data Archive).</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">&nbsp;</span></p>
<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b><span style="font-family:'Verdana',sans-serif"></span></p>
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<li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif; color:black">Zixin Nie is a data privacy specialist and HEAL Steward working within the Center for Data Modernization Solutions at RTI. He has over
 7 years of experience working in data privacy. Prior to RTI, he worked at Privacy Analytics, a subsidiary of IQVIA, as a data privacy specialist, creating solutions for clients in industries such as health care, pharmaceuticals, advertising, technology, and
 government. He is experienced in data de-identification and anonymization, privacy impact evaluation, privacy by design principles, and has performed expert determinations under the Health Insurance Portability and Accountability Act. He is an active holder
 of the Certified Information Privacy Professional/United States (CIPP/US) certification from the International Association of Privacy Professionals (IAPP).</span><span style="font-size:12.0pt; font-family:'Verdana',sans-serif"></span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:'Verdana',sans-serif">Tags: public, webinar, data sharing, FAIR data, FAIR, de-identification, data sharing</span></p>
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This month’s Fresh FAIR webinar features Zixin Nie of the HEAL Data Stewardship Group (HEAL Stewards) providing a deeper look into data de-identification, including how to determine what data to de-identify and appropriate de-identification methods based 

Protecting Privacy in HEAL Research: A Deep Dive Into Data De-identification

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<p class="MsoNormal">Collective Board Meeting Summary: The potential scope of a HEAL Working Group on data standards was discussed. Evaluating all of the standards that come into question and understanding whether they are mappable to each other, understanding
 and clustering data types across HEAL, understanding the needs of and challenges facing researchers which make harmonization compelling, identifying opportunities to share tools and resources already in use with the broader community, defining a driving research
 question or opportunity to conduct retrospective analysis, and considering harmonization strategies for different stages in the research lifecycle are some examples. While there was no consensus on the best place to start, there was consensus that concrete
 objectives with aims and set timelines will be critical and that this will benefit future studies more than those already underway.</p>
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Collective Board Meeting Summary: The potential scope of a HEAL Working Group on data standards was discussed. Evaluating all of the standards that come into question and understanding whether they are mappable to each other, understanding and clustering 

Data Standards for HEAL

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">This month’s Fresh FAIR webinar features Sarah Myer of the HEAL Data Stewardship Group (HEAL Stewards) and Sara Volk de Garcia of the HEAL Data Platform (HEAL
 Platform) Team guiding participants in submitting study-level metadata (SLMD) to the HEAL Platform via the Center for Expanded Data Annotation and Retrieval (CEDAR) form. Submitting SLMD is a requirement for HEAL studies and can be done at any stage in the
 research process. SLMD is essential for accurately describing HEAL studies, enabling search across the HEAL Platform, and allowing investigators to find datasets relevant to their research. This then increases the potential for novel discoveries and treatments
 for people affected by the pain and opioid use disorder public health crises. </span>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Myer and Volk de Garcia will also emphasize how you can take advantage of HEAL Data Ecosystem resources to assist with the process of submitting SLMD. The presentation
 will be followed by a live Q&amp;A, which will include HEAL Stewards and HEAL Platform representatives.</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">&nbsp;</span></p>
<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b><span style="font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Sarah Myer, MPH, MCHES is a Data Steward in the Data Management Group at RENCI. Myer provides subject matter expertise and technical
 support for the HEAL Data Stewardship Group on data curation, reuse, and harmonization. Myer has experience in public health program evaluation, human-subject translational research, community-based research, data management, HIPAA compliance, and technical
 training.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Sara Volk de Garcia, PhD, is a part of the HEAL Data Platform team and the User and Data Services group at the Center for Translational
 Data Science (CTDS). In this role, she provides user and data support services for assorted Gen3 platform projects, including HEAL. Along with the rest of the Platform team, she helps HEAL study investigators register their study, complete their study-level
 metadata form, upload variable-level metadata, and access and use the HEAL workspace. Sara’s experience in software user support, technical writing, grant-funded programs, and science communication and education, her training in public health and biochemistry,
 as well as her familiarity with academia, has prepared her to deliver cheerful and competent service to HEAL investigators.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li></ul>
<p class="MsoNormal" style="margin-left:.5in; background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">Tags: public, webinar, data sharing, FAIR data, FAIR, data management, metadata, HEAL Platform, study-level metadata, SLMD</span></p>
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This month’s Fresh FAIR webinar features Sarah Myer of the HEAL Data Stewardship Group (HEAL Stewards) and Sara Volk de Garcia of the HEAL Data Platform (HEAL Platform) Team guiding participants in submitting study-level metadata (SLMD) to the HEAL Platfo

Increase Your Impact Factor Part 2: Study-Level Metadata Submission to the HEAL Data Platform

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<p class="MsoNormal">Collective Board Meeting Summary: Discussion focused on the development of a data reuse use case for HEAL. Members shared detailed experiences of challenges in harmonizing data. Many HEAL research programs are putting significant effort
 into making their datasets combinable. Opportunities for progress toward use case development were shared, and possible research questions were discussed. Based on member feedback, it will likely be another 1.5-2 years before a significant number of HEAL datasets
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Collective Board Meeting Summary: Discussion focused on the development of a data reuse use case for HEAL. Members shared detailed experiences of challenges in harmonizing data. Many HEAL research programs are putting significant effort into making their 

Harmonizing Overlapping Datasets

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">You asked, we listened! This month’s Fresh FAIR webinar features Mary Hannah Currin of the HEAL Data Stewardship Group diving into specifics and examples for
 developing a HEAL-compliant Data Management &amp; Sharing Plan (DMSP). A DMSP is essential for investigators to plan for the long-term use and reuse of study data, thereby increasing the broader impact within the HEAL Data Ecosystem and maximizing the potential
 for life-saving discoveries. Currin will also emphasize how you can take advantage of HEAL Data Ecosystem resources to assist with the process of writing a DMSP. The presentation will be followed by a live Q&amp;A, which will include perspectives from DMSP experts
 and NIH representatives.</span></p>
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<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b><span style="font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Mary Hannah Currin, MS, is a Research Data Analyst at RTI International. She has experience in clinical research recruitment and database
 management, having worked for over 4 years at the Carolina Institute for Developmental Disabilities (CIDD) coordinating recruitment efforts for a variety of research studies and managing several recruitment databases maintained by the CIDD. She also has experience
 in academic and specialized libraries and holds an ALA accredited degree in information science. She previously worked as the librarian for the Office of Air Quality Planning and Standards at the RTP campus of the EPA. She is a member of the HEAL Data Stewardship
 Group and helps develop guidance for data management, curation, and strategy.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">Tags: public, webinar, data sharing, FAIR data, FAIR, data management, DMSP, data management and sharing plan</span></p>
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You asked, we listened! This month’s Fresh FAIR webinar features Mary Hannah Currin of the HEAL Data Stewardship Group diving into specifics and examples for developing a HEAL-compliant Data Management & Sharing Plan (DMSP). A DMSP is essential for invest

Spring Forward Into FAIR: HEAL Data Management & Sharing Plans

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<p class="MsoNormal">Collective Board Meeting Summary: After an introduction to and demonstration of HEAL Semantic Search powered by Dug, members were asked to respond to a proposed value hypothesis. A number of members felt Dug could be very promising, but
 its success will depend on how well it is executed and how much data it has access to. Members provided suggestions for functionality improvements.</p>
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Collective Board Meeting Summary: After an introduction to and demonstration of HEAL Semantic Search powered by Dug, members were asked to respond to a proposed value hypothesis. A number of members felt Dug could be very promising, but its success will d

Introduction to HEAL Semantic Search 

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">This month’s Fresh FAIR webinar features Liezl Mae Fos of the HEAL Data Stewardship Group highlighting the most important takeaways from previous Fresh FAIR webinars,
 as well as lessons learned from a year of working in partnership with investigators to make their data FAIR. Fos will emphasize how you can take advantage of HEAL Data Ecosystem resources to make your data more valuable to other researchers and attain compliance
 with the NIH data sharing policy. The presentation will be followed by a live Q&amp;A.</span></p>
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<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b><span style="font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Liezl Mae Fos, MS, is a HEAL Data Steward in the Data Management Group at RENCI. Fos has 5 years of experience working in both industry-led
 and academia-focused clinical research trials. Working previously for a large contract research organization, she was involved in the management of several study sites within a given trial, ensuring that proper documentation and clinical procedures were followed.
 She has worked closely with PIs to ensure that study visits and other study-related tasks run smoothly and efficiently during her time as clinical research coordinator for a medical university. As a HEAL Data Steward, Fos integrates her background to support
 investigators in the HEAL ecosystem by providing guidance and strategy for data management.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">Tags: public, webinar, data sharing, FAIR data, FAIR, insights, data management</span></p>
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This month’s Fresh FAIR webinar features Liezl Mae Fos of the HEAL Data Stewardship Group highlighting the most important takeaways from previous Fresh FAIR webinars, as well as lessons learned from a year of working in partnership with investigators to m

Fresh FAIR Insights: Getting the Most From Your HEAL Data

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<p class="MsoNormal">Collective Board Meeting Summary: The Stewards presented a draft list of hurdles and limitations associated with sharing various types of sensitive HEAL data. For each type of sensitive data, members provided feedback on whether their studies
 dealt with that type of data, what specific challenges they had faced, what resources they used for assistance and guidance, and any other related hurdles that had not been mentioned. Members shared perspectives on what Stewards could focus on to best serve
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Collective Board Meeting Summary: The Stewards presented a draft list of hurdles and limitations associated with sharing various types of sensitive HEAL data. For each type of sensitive data, members provided feedback on whether their studies dealt with t

Sharing Sensitive HEAL Data

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<p style="margin:0in"><span style="font-family:'Arial',sans-serif; color:black">The 4th Annual NIH HEAL Initiative Investigator Meeting was held February 21-22, 2023. It included more than 350 participants from across the HEAL Initiative, including several
 members of the HEAL Data Ecosystem, who ran a booth and participated in the event’s poster session.
<a href="https://docs.google.com/document/d/1VtqL3tLvk75xnl7Wa4q8REhrYNQ13LpeBbMahgEbaGA/edit?usp=sharing">
This report</a> highlights metrics and key takeaways from in-person engagement with investigators.
</span></p>
<p style="margin:0in"><span style="font-family:'Arial',sans-serif; color:black">&nbsp;</span></p>
<p style="margin:0in"><span style="font-family:'Arial',sans-serif; color:black">The HEAL Data Ecosystem booth featured members who assisted and encouraged attending PIs to complete their CEDAR study-level metadata form, with a raffle for those who registered
 by Thursday February 23, 2023 at 11:59 PST. We’d like to congratulate the winning studies, located in
</span><a href="https://docs.google.com/document/d/1hEqd4Jkq4AymPnB6CARfblXfvWyFsLxd8ZObBvNLm0s/edit"><span style="font-family:'Arial',sans-serif; color:#1155CC">this document</span></a><span style="font-family:'Arial',sans-serif; color:black">.</span></p>
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The 4th Annual NIH HEAL Initiative Investigator Meeting was held February 21-22, 2023. It included more than 350 participants from across the HEAL Initiative, including several members of the HEAL Data Ecosystem, who ran a booth and participated in the ev

HEAL Data Ecosystem at the 4th Annual PI Meeting

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<p class="MsoNormal">Collective Board Meeting Summary: HEAL Connections presented their plans and responded to questions. Members shared insights on their varied dissemination plans, and several saw opportunities for improvement in their dissemination efforts.
 Feedback on training which would be beneficial for members of study teams and on proposed Connections services were collected in an EasyRetro board.</p>
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Collective Board Meeting Summary: HEAL Connections presented their plans and responded to questions. Members shared insights on their varied dissemination plans, and several saw opportunities for improvement in their dissemination efforts. Feedback on tra

HEAL Connections & Disseminating HEAL Findings

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<p style="margin:0in"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Since its launch in 2018, the
</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"><a href="https://heal.nih.gov/"><span style="color:#1155CC">NIH HEAL Initiative</span></a></span><sup><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">®
</span></sup><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">has grown significantly and now consists of 42 distinct programs funding over 1,000 studies. Each of these programs and studies is generating vast amounts of data with
 the potential to accelerate scientific discovery around pain and opioid use disorders; however, investigators must first take the necessary steps to ensure their study’s data complies with the
</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"><a href="https://heal.nih.gov/data/public-access-data"><span style="color:#1155CC">HEAL Public Access and Data Sharing Policy</span></a></span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">.&nbsp;</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<p style="margin:0in"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Effective data sharing greatly increases the likelihood of quickly discovering effective treatments and interventions for those affected by these critical public
 health crises. To help investigators understand where they are in the data sharing process, the HEAL Data Stewardship Group (HEAL Stewards) has developed a checklist detailing the necessary steps and associated resources for HEAL-compliant data.&nbsp;</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<p style="margin:0in"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">In this webinar, Kira Bradford and Allie Gartland-Gray of the HEAL Stewards will lead a presentation walking investigators through the newly developed
</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"><a href="https://www.healdatafair.org/resources/road-map"><span style="color:#1155CC">HEAL-compliant Data Checklist</span></a></span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">.
 The presentation will be followed by a live Q&amp;A with Bradford, Gartland-Gray, and NIH representatives focused on data sharing and how making your data HEAL-compliant sets you up for success with the
</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"><a href="https://grants.nih.gov/grants/guide/notice-files/NOT-OD-21-013.html"><span style="color:#1155CC">2023 NIH Data Management and Sharing Policy</span></a></span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">
 and accelerates your research and publications.&nbsp;</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">&nbsp;</span></p>
<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b><span style="font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Kira Bradford, PhD, is a Scientific Computing Principal Investigator at RTI International working at the intersection between cloud-based
 cyberinfrastructure development and scientific research. Bradford is a co-lead of the Data Management and Consultancy Group for the NIH HEAL Data Stewardship Group. Her team science background combined with her professional and research experiences provide
 a foundation for her work as a leader in multi-disciplinary and multi-institutional projects that accelerate research by enabling access to computational cloud-based resources.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Allie Gartland-Gray, MPS, is a research data analyst in the Research Computing Division at RTI International. She has experience in
 data collection, management, and storage, and has nearly four years of experience working in the field of health informatics in a combination of both academic and professional settings. Her educational background is in biology and biomedical health and informatics,
 and she leverages this knowledge as a HEAL Steward to help develop tools and guidance for research data governance, curation, and deposition.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li></ul>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">&nbsp;</span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">Tags: public, webinar, data sharing, policy, checklist</span></p>
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Since its launch in 2018, the NIH HEAL Initiative® has grown significantly and now consists of 42 distinct programs funding over 1,000 studies. Each of these programs and studies is generating vast amounts of data with the potential to accelerate scientif

Step-by-step Checklist for HEAL-compliant Data

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<p class="MsoNormal"><b>Collective Board Meeting Summary: </b>The HEAL Connections Team was introduced to the board. Anthony and Phil presented the proposed approach to collecting variable-level metadata (VLMD) from HEAL studies. Discussion included how to
 handle multiple research sites, multiple VLMD versions, and multiple publications by the same study. Members emphasized the need to educate investigators on the benefits of employing the best tools and processes for sharing VLMD in the planning phase of the
 study and the importance of including the meaning of the variables from the human perspective to make metadata truly usable.</p>
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Collective Board Meeting Summary: The HEAL Connections Team was introduced to the board. Anthony and Phil presented the proposed approach to collecting variable-level metadata (VLMD) from HEAL studies. Discussion included how to handle multiple research s

Variable-level Metadata Collection

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">HEAL Data Platform Study Registration Office Hours are venues for HEAL investigators to receive real-time, hands-on support registering studies on the HEAL Platform. These
 office hours also offer the opportunity for investigators to ask questions they may have about study-level metadata or any other parts of the process associated with Platform registration. Learn more and register at
<b><a href="https://bit.ly/HEALPlatform_OfficeHours2022">https://bit.ly/HEALPlatform_OfficeHours2022</a>.
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HEAL Data Platform Study Registration Office Hours are venues for HEAL investigators to receive real-time, hands-on support registering studies on the HEAL Platform. These office hours also offer the opportunity for investigators to ask questions they may

HEAL Data Platform Study Registration Office Hour

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<p class="MsoNormal"><b>Collective Board Meeting Summary:</b> Dr. Gregurick talked about key data sharing initiatives and strategies within the NIH. The HEAL initiative’s alignment with broader NIH objectives were highlighted. The challenges of improving rates
 of data reuse and overcoming data privacy issues were discussed.</p>
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Collective Board Meeting Summary: Dr. Gregurick talked about key data sharing initiatives and strategies within the NIH. The HEAL initiative’s alignment with broader NIH objectives were highlighted. The challenges of improving rates of data reuse and over

Linking the HEAL Data Ecosystem to broader biomedical data sharing efforts

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<span style="font-size:12pt; font-family:Verdana,sans-serif; color:black">Effective January 25, 2023, the new NIH Data Management and Sharing Policy requires submission of a Data Management and Sharing Plan with any new or current proposals involving scientific
 data generation. This requirement is in line with the NIH HEAL Initiative®’s requirements specified in the HEAL Public Access and Data Sharing policy. The NIH and HEAL commitment to ensure that each award in the HEAL Data Ecosystem effectively plans and implements
 data management and sharing will allow the HEAL Data Platform to serve as a powerful tool to catalyze scientific discovery and innovation, leading to improved treatments and outcomes for those affected by pain and opioid use disorders.
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<span style="font-size:12pt; font-family:Verdana,sans-serif; color:black">&nbsp;</span></p>
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<span style="font-size:12pt; font-family:Verdana,sans-serif; color:black">In this webinar, Mary Hannah Currin of the HEAL Data Stewardship Group will lead a presentation on preparing Data Management and Sharing Plans using the NIH template to comply with NIH
 and HEAL-specific requirements, providing tailored resources for HEAL awardees along the way. The webinar will also feature lightning talks from experts in data management and sharing to showcase lessons learned, barriers, and helpful tips for following the
 NIH template. Terrell Russell of the HEAL Data Stewardship Group will then moderate a live Q&amp;A session.</span></p>
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<span style="font-size:12pt; font-family:Verdana,sans-serif; color:black">&nbsp;</span></p>
<p class="x_x_elementToProof" style="margin:0in; background:white"><b><span style="font-size:12pt; font-family:Verdana,sans-serif; color:rgb(152,37,104); background:white">Presenter Names and Bios:</span></b><span style="font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<div class="elementToProof"><span><span style="font-family:&quot;Verdana&quot;,sans-serif; font-size:12.0pt">Mary Hannah Currin, MS, is a Research Data Analyst in the Research Computing Division at RTI International. She has experience in clinical research recruitment
 and database management, having worked for over 4 years at the Carolina Institute for Developmental Disabilities (CIDD) coordinating recruitment efforts for a variety of research studies and managing several recruitment databases maintained by the CIDD. She
 also has experience in academic and specialized libraries and holds an ALA accredited degree in information science. She previously worked as the librarian for the Office of Air Quality Planning and Standards at the RTP campus of the EPA. She is a member of
 the HEAL Data Stewardship Group and helps develop guidance for data management, curation, and strategy.</span><br>
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<span><span style="font-family:&quot;Verdana&quot;,sans-serif; font-size:12.0pt">Jen Darragh, MLIS, is a Senior Research Data Management Consultant in the Center for Data and Visualization Sciences at Duke University, where she provides training and consulting services
 designed around the research data lifecycle covering general best practices as well as special topics and tools. She also serves as one of the data curators for the research data program supported by the Duke Digital Repository. Prior to joining Duke University,
 she was the Data Services and Sociology Librarian at Johns Hopkins University, the Social and Behavioral Sciences Librarian at Virginia Commonwealth University, and the Data Archivist for the Population Research Institute at Penn State University. Throughout
 her career, she has gained particular expertise in the management, use, and archiving of sensitive social, behavioral, and health sciences data.</span></span>
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<li style="font-size:12pt; font-family:Verdana,sans-serif"><span><span style="font-family:Verdana,sans-serif; font-size:12pt">Nina Exner, PhD, MLS, MA, brings more than 20 years of experience as a practicing librarian in academic and health sciences libraries
 to Virginia Commonwealth University Libraries. As the Research Data Librarian, she brings to bear vast teaching interests and knowledge of best practices in managing research studies. She concentrates on graduate student and faculty support through teaching,
 consultation, scholarly communications and collaboration with sponsored research professionals. Her expertise and teaching experience include grant writing. Her own research interests center around the organizational and information effects on developing researchers.</span></span>
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 in data management practices and research data management tools. He also serves as the UA Libraries liaison for the UA College of Optical Sciences; the School of Geography, Development, and Environment; and the College of Science departments of Astronomy,
 Computer Science, Geosciences, Hydrology &amp; Atmospheric Sciences, Mathematics, Physics, and Planetary Sciences/Lunar and Planetary Laboratory (LPL).</span><br>
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Effective January 25, 2023, the new NIH Data Management and Sharing Policy requires submission of a Data Management and Sharing Plan with any new or current proposals involving scientific data generation. This requirement is in line with the NIH HEAL Init

New Year, New Policy: Crafting a HEAL-compliant Data Management & Sharing Plan

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<p class="MsoNormal"><b>Meeting Summary: </b>The Collective Board discussed HEAL CDEs in further detail. Updates were shared to clarify outstanding questions from the Sep. meeting, and new questions were collected. HEAL variable-level data collection and the
 semantic search engine, Dug were presented and initial impressions and input was gathered from members.</p>
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Meeting Summary: The Collective Board discussed HEAL CDEs in further detail. Updates were shared to clarify outstanding questions from the Sep. meeting, and new questions were collected. HEAL variable-level data collection and the semantic search engine, 

HEAL CDEs part II, HEAL variable-level metadata strategy, Dug semantic search

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">In July 2022, Dr. Rebecca Baker, Director of the
<a href="https://heal.nih.gov/">NIH HEAL Initiative</a>®, announced the official launch of the HEAL Data Platform, a secure, cloud-based platform through which users will be able to access data from hundreds of HEAL-funded studies on the prevention and treatment
 of pain, opioid use disorder, and related conditions. By providing standardized access to data from across the HEAL Initiative together with powerful search and analytical tools, the HEAL Data Platform will catalyze scientific discovery and innovation, leading
 to improved treatments and outcomes for those affected by pain and opioid use disorders.&nbsp;</span></p>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">In this webinar, Phil Schumm and Eric Giger of the HEAL Data Platform Team will lead presentations on how HEAL investigators can register their study on the Platform
 and provide metadata describing their study. Doing so is the first step in preparing to share your data and complying with the
<a href="https://heal.nih.gov/data/public-access-data">HEAL Public Access and Data Sharing policy</a>. Following these presentations, lightning talks will be provided by Allie Gartland-Gray of the HEAL Stewards on study-level metadata and Brady Granier of BioCorRx
 Pharmaceuticals, Inc. on his experience registering a study. Gaurav Vaidya of the HEAL Stewards will then lead a panel discussion and Q&amp;A with the presenters, as well as HEAL Collective Board members Marisa Briones and Georgene Hergenroeder.</span></p>
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<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b><span style="font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Phil Schumm is a statistician and Director of the Research Computing Group in the Department of Public Health Sciences at the University
 of Chicago. He has served as technical director for numerous Data Coordinating Centers, including the NIDDK-funded Inflammatory Bowel Disease Genetics Consortium and the International IBD Genetics Consortium for which he has led development of a Data Commons.
 He is Co-PI (with Robert Grossman) of the HEAL Data Platform and co-leads the Data and Analytic Support Core for the NIDA-funded Justice Community Opioid Innovation Network (JCOIN).</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Eric Giger received his BA in Economics from the University of Chicago. He's been with the Center for Translational Data Science at
 the University of Chicago since the beginning of this year. Having previously worked on the data collection end of clinical addiction research, Eric now provides User Support to researchers on the HEAL Data Platform, eager to help those Helping to End Addiction
 Long-term.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Brady Granier earned his Bachelor of Science degree in Nursing in 1995. During his nursing career, he specialized in the critical care
 areas of ER/ICU/CCU and CICU. He also moonlighted as a home health nurse, critical care air transport nurse and TV studio set medic. In 1996, he moved to California as a travel nurse and spent most of his remaining years in healthcare as the charge nurse in
 the emergency room at White Memorial Hospital in downtown Los Angeles. After leaving nursing and during the 12 years prior to joining BioCorRx® in 2013, Mr. Granier was involved in sales management, media sales, and business development. A few years after
 returning to healthcare, he co-founded BioCorRx Pharmaceuticals, Inc. after seeing the need to develop more medications to treat addiction such as BICX104, an implantable naltrexone pellet for alcohol and opioid use disorders currently in human trials.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Allie Gartland-Gray, MPS, is a research data analyst in the Research Computing Division at RTI International. She has experience in
 data collection, management, and storage, and has nearly 4 years of experience working in the field of health informatics in a combination of both academic and professional settings. Ms. Gartland-Gray’s educational background is in biology and biomedical health
 and informatics, and she leverages this knowledge as a HEAL Steward to help develop tools and guidance for research data governance, curation, and deposition.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Marisa Briones, PhD, is the CEO/Co-founder of BDH Pharma in Los Angeles, California. Dr. Briones earned her PhD in Molecular and Medical
 Pharmacology from the University of California, Los Angeles, where her graduate work focused on pharmacokinetics, drug-drug interactions, and mechanisms of drug action. She has over 10 years of extensive research experience ranging from basic, pre-clinical
 research, translational science, clinical research, and clinical trials.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Georgene Hergenroeder, PhD, serves as Associate Professor in the Vivian L. Smith Department of Neurosurgery at the University of Texas
 Health Science Center at Houston. Dr. Hergenroeder’s primary research interests center on improving patient outcomes after spinal cord and brain injury. Her research focus has been on biomarker discovery in order to predict which patients may benefit from
 future intervention.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">Tags: public, webinar,
<span style="color:black; background:white">freshfair</span>, platform, registration, study, impact</span></p>
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In July 2022, Dr. Rebecca Baker, Director of the NIH HEAL Initiative®, announced the official launch of the HEAL Data Platform, a secure, cloud-based platform through which users will be able to access data from hundreds of HEAL-funded studies on the prev

Increase Your Impact Factor: Study Registration on the HEAL Data Platform

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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">The
<a href="https://heal.nih.gov/">NIH HEAL Initiative</a>® aims to connect and increase access to hundreds of pain, opioid use, addiction, and other related datasets through a centralized platform. This process involves many challenges associated with sharing
 disparate data through one unified platform, but by integrating data curation activities into the HEAL Data Ecosystem, data from multiple datasets and sources can be directly compared and searched across to allow for unique and novel analyses. By properly
 preparing data for reuse and interoperability, data curation ensures that the value of HEAL data is maximized, thus positioning the HEAL Platform to serve as an essential catalyst for new insights, treatment discovery, and improved outcomes for those affected
 by pain and opioid use disorders.&nbsp;</span></p>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">In this webinar, Mary Hannah Currin and Bethany Cook of the HEAL Data Stewardship Group will lead a presentation providing an overview of data curation and its
 importance in enhancing HEAL’s FAIR data principles. Following these presentations, Mary Hannah will lead a panel discussion and Q&amp;A with Bethany, Terrell Russell of the HEAL Stewards, and Patricia Ceger of RTI International.
</span></p>
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<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b><span style="font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Mary Hannah Currin, MS, is a research data analyst in the Research Computing Division at RTI International. She has experience in clinical
 research recruitment and database management, having worked for over 4 years at the Carolina Institute for Developmental Disabilities (CIDD) coordinating recruitment efforts for a variety of research studies and managing several recruitment databases maintained
 by the CIDD. Ms. Currin also has experience in academic and specialized libraries and holds an ALA accredited degree in information science. She previously worked as the librarian for the Office of Air Quality Planning and Standards at the RTP campus of the
 EPA. Ms. Currin is a member of the HEAL Stewards team and helps develop guidance for data management, curation, and strategy.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style=""><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Bethany Cook, MS, is a Computational Chemist whose research interests are in understanding how we can use information about a chemical structure to
 predict the impact on biological systems. Her work using reproducible workflows such as KNIME supports data curation focused on chemical exploration and risk assessment. With a background in analytical and computational chemistry, Bethany’s goal is to reduce
 the strain of large-scale chemical testing with the use of computational methods and read-across data. As a recent addition to RTI International and the HEAL Stewards, her focus is to help ease data access through curation needs.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style=""><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Terrell Russell, PhD, serves as the Director of Data Management for RENCI as well as the Executive Director of the iRODS Consortium. In addition to
 providing direction and support for data management efforts at RENCI, he provides management and oversight of the iRODS Consortium and high-level architecture design. He’s interested in distributed systems, metadata, security, and open-source software that
 accelerates science. Terrell holds a B.S. in Computer Engineering, a B.S. in Information Technology and Service Organizations, and an M.S. in Computer Networking from North Carolina State University, and a Ph.D. in Information Science from the University of
 North Carolina at Chapel Hill.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style=""><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Patricia Ceger, MS, DABT, is a Toxicologist with over fifteen years of experience using toxicological test data from laboratory animals, humans, and
 ecological species to support regulatory decision making. This includes validation and development of New Approach Methods (NAMs) in areas such as endocrine systems, acute toxicity (dermal, inhalation, ocular, and oral), and aquatic toxicity. Her research
 interests include ways to improve the FAIRness of toxicology data throughout the data lifecycle including use of knowledge organization systems and outreach to stakeholders.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">Tags: public, webinar,
<span style="color:black; background:white">freshfair</span>, curation, impact, datacuration</span></p>
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The NIH HEAL Initiative® aims to connect and increase access to hundreds of pain, opioid use, addiction, and other related datasets through a centralized platform. This process involves many challenges associated with sharing disparate data through one un

Data Curation 101: Maximizing the Impact of Your Data

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<p class="MsoNormal"><b>Collective Board Meeting Summary:</b> Discussed the importance of achieving a greater degree of conformity for domain-specific CDEs and means of promoting usage. Members shared hurdles they encountered and questions they had about HEAL's
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Collective Board Meeting Summary: Discussed the importance of achieving a greater degree of conformity for domain-specific CDEs and means of promoting usage. Members shared hurdles they encountered and questions they had about HEAL's CDE program.

HEAL CDEs

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<p class="MsoNormal"><b>Collective Board Meeting Summary:</b> Discussed concerns and recommendations for promoting Platform registration and opportunities for collaboration on the Platform. Identified sources of potential confusion, resources needed and possible
 process improvements to support Platform registration. Platform collaboration focused on methods investigators could use to find related research. Charlie Knott gave an overview of study-level metadata Tiger Team activities.</p>
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Collective Board Meeting Summary: Discussed concerns and recommendations for promoting Platform registration and opportunities for collaboration on the Platform. Identified sources of potential confusion, resources needed and possible process improvements

Engaging PIs in Platform registration & data sharing

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<p style="margin:0in"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">The
</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"><a href="https://heal.nih.gov/"><span style="color:#1155CC">NIH HEAL Initiative</span></a><span style="color:black">® is working to increase access to pain and opioid data through a centralized
 platform–this involves connecting hundreds of datasets and building a unified search for users to derive knowledge from this data. A major challenge is the disparate nature of datasets, with many using their own ‘language’ for their data. The use of Common
 Data Elements (CDEs) solves this challenge by providing common terms for researchers to describe their data, thus streamlining the process of standardizing data for ingestion into selected repositories and making unrelated datasets easier to compare. Implementation
 of CDEs allows for unprecedented search across datasets, facilitating new knowledge sharing, treatment discovery, and ultimately, improved patient outcomes for those suffering from pain and opioid use disorders.&nbsp;</span></span></p>
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<p style="margin:0in"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">In this webinar, Dr. Laura Wandner, Program Officer in the Office of Pain Policy and Planning</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">
<span style="color:black">at the National Institute of Neurological Disorders and Stroke (NINDS), will lead a presentation providing an overview of the
</span><a href="https://heal.nih.gov/data/common-data-elements"><span style="color:#1155CC">HEAL Common Data Elements (CDEs) Program</span></a><span style="color:black"> and related resources provided by NIH. Dr. Gaurav Vaidya of the HEAL Data Stewardship Group
 will then lead a presentation delving into the application of CDEs in existing HEAL efforts and providing specific use cases.</span></span></p>
<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">&nbsp;</span></p>
<p style="margin:0in"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Following these presentations, Dr. Kira Bradford of the HEAL Data Stewardship Group will lead a panel discussion and Q&amp;A with Wandner and Vaidya, along with
 other experts working with CDEs. </span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<p style="margin:0in; background:white"><b><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:#982568; background:white">Presenter Names and Bios:</span></b><span style="font-family:&quot;Verdana&quot;,sans-serif"></span></p>
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<li class="MsoNormal" style="background:white"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Laura D. Wandner, PhD, is a Program Director in the Office of Pain Policy and Planning at the National Institute of Neurological Disorders
 and Stroke (NINDS). She manages programs within the Acute to Chronic Pain Signature Program (A2CPS) and the Helping to End Addiction Long-Term Initiative (HEAL). She also leads the HEAL Initiative’s Common Data Element (CDE) initiative. Wandner, a clinical
 health psychologist, continues to treat pain patients at Walter Reed National Military Medical Center (WRNMMC).&nbsp;Wandner received a BA in psychology and government from Connecticut College and her MS and PhD in clinical psychology from the University of Florida.
 Wandner completed her internship and postdoctoral training in clinical health psychology at the Connecticut Veterans Administration.</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style=""><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Gaurav Vaidya, PhD, is a Semantic Web Technologist at RENCI and a software developer for the HEAL Data Stewardship Group, where he has been working
 on incorporating HEAL CDEs into RENCI’s semantic search engine, Dug. He has previously worked on CDE-related initiatives as part of the National Cancer Institute’s Center for Cancer Data Harmonization.&nbsp;</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"></span></li><li class="MsoNormal" style=""><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Kathy Sward, PhD,</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"> is a Professor in the College of Nursing at the University
 of Utah. Sward has extensive experience in biomedical and nursing informatics, including terminology/vocabulary management and data/information standards, and the design, development, and implementation of decision-support systems and databases. She has a
 diverse clinical background including clinical nursing (Med-Surg and ICU), education, and administration. Her current research is in the area of clinical research informatics, including clinical and translational research, the unique aspects of managing research
 information in special populations, and informatics to support exposure science and sensor monitoring. Sward earned a PhD in Nursing/Informatics from the University of Utah.</span></li><li class="MsoNormal" style=""><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Diane Hartford<b>
</b></span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">is a Senior IT Project Manager at the University of Utah Health. She<b>
</b>received a master’s degree in Human Development from the University of Utah. She has twenty years of project management experience and is a certified Project Management Professional (PMP). She and her team support the HEAL CDE Program by tracking PI submissions,
 improving processes, and reviewing CDE measures. Other projects include migrating the NEMSIS data bank and systems from on-premises to the AWS Cloud. She is responsible for budget, procurement of professional services, tracking and reporting the progress of
 the internal project team and the three external organizations. Additionally, Hartford leads the IT Project Management Office (PMO) at the Data Coordinating Center (DCC).</span></li><li class="MsoNormal" style=""><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Meredith Adams, MD,<b>
</b>is an Assistant Professor of Anesthesiology at Wake Forest Baptist Health and the only NIH-funded researcher board certified in Anesthesiology, Pain Medicine, and Clinical Informatics. She is currently funded by the NIH National Institute of Biomedical
 Imaging and Bioengineering (K08) to study opioid response phenotypes for people with low back pain through the Mentored Clinician Scientist program. Additionally, she is a member of the
</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif"><a href="https://school.wakehealth.edu/research/labs/pain-mechanisms-lab"><b><span style="color:#1155CC">Pain Mechanisms Lab</span></b></a><span style="color:black"> at the Wake Forest
 School of Medicine and teaches and practices clinical pain medicine at Wake Forest Baptist. Her research interests include novel approaches to pain education and pain biomedical informatics. She received her MD from Tulane University School of Medicine.</span></span></li><li class="MsoNormal" style=""><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:black">Andrew Siddons, MPH</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">, is a scientific technical writer (contractor) working in
 the Office of Pain Policy and Planning within the National Institute of Neurological Disorders and Stroke. He supports the work of the NIH Pain Consortium, the Interagency Pain Research Coordinating Committee, and the NIH HEAL Initiative, including coordination
 of the HEAL clinical pain common data elements program.</span></li><li class="MsoNormal" style="margin-bottom:12.0pt"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif; color:#0E101A">Linda Porter, PhD</span><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">,<span style="color:black"> directs the
 Office of Pain Policy at NINDS. Porter provides guidance and coordination of the NIH pain research programs through collaboration with the NIH Pain Consortium and supports the activities and programs of the consortium. She also serves as the Designated Federal
 Official for the Interagency Pain Research Coordinating Committee, an entity established through the Patient Protection and Affordable Care Act of 2010 to address issues relevant to the federal pain research portfolio. In this role, she co-led the National
 Pain Strategy and the Federal Pain Research Strategy. Porter joined the NINDS in 2003 after serving for 15 years on the faculty at Uniformed Services University.</span></span></li></ul>
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<p class="MsoNormal"><span style="font-size:12.0pt; font-family:&quot;Verdana&quot;,sans-serif">Tags: public, webinar,
<span style="color:black; background:white">freshfair</span>, CDEs, commondataelements, datasharing</span></p>
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The NIH HEAL Initiative® is working to increase access to pain and opioid data through a centralized platform–this involves connecting hundreds of datasets and building a unified search for users to derive knowledge from this data. A major challenge is th

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