<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
</head>
<body>
<div class="elementToProof" style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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>
<div class="elementToProof" style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
&nbsp;</div>
<div class="elementToProof" style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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>
<div style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
</body>
</html>


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

Heal Data Calendar

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
</head>
<body>
<div class="elementToProof" style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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>
</body>
</html>


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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
</head>
<body>
<div class="elementToProof" style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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
 users, one member suggested having sample Jupyter notebooks for several use cases available on the Platform</div>
</body>
</html>


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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
</head>
<body>
<div class="elementToProof" style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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>
<div style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
<div class="elementToProof" style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
<div style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
</body>
</html>


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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
</head>
<body>
<div class="elementToProof" style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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>
<div style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
<div class="elementToProof" style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
<div style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
</body>
</html>


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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
</head>
<body>
<div class="elementToProof" style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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>
<div style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
<div class="elementToProof" style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
<div style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
</body>
</html>


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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
</head>
<body>
<div class="elementToProof" style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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>
</body>
</html>


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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
</head>
<body>
<div class="elementToProof" style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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
 overdose crisis is a priority for the current administration.&nbsp;</div>
<div style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
&nbsp;</div>
<div style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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>
<div style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
&nbsp;</div>
<div style="text-align:left; text-indent:0px; margin:0in; font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
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>
<div style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
<div style="font-family:Aptos,Aptos_EmbeddedFont,Aptos_MSFontService,Calibri,Helvetica,sans-serif; font-size:11pt; color:rgb(0,0,0)">
<br>
</div>
</body>
</html>


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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#467886" vlink="#96607D" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#467886" vlink="#96607D" style="word-wrap:break-word">
<div class="WordSection1">
<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
 show why this is important.</p>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#467886" vlink="#96607D" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#467886" vlink="#96607D" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<p class="MsoNormal">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 overview, its current status, and the role and impact of the CB. Discussion questions provided insight into how the Board and HEAL teams can support HDE development going forward.</p>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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
 factors.</p>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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
 will be available.</p>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<div>
<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>
<p class="MsoNormal">&nbsp;</p>
<p class="MsoNormal">&nbsp;</p>
</div>
</div>
</body>
</html>

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 

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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
 the investigator community.</p>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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
 CDE program.</p>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<p style="margin:0in; vertical-align:baseline"><b>Collective Board Meeting Summary:</b> Members considered whether and under what conditions HEAL studies producing multiple data types should deposit their data into one single or multiple data&nbsp; repositories.
 The importance of unique identifiers, the challenge of re-aggregating data, and the need for multiple Data Use Agreements were discussed. The importance of minimizing overhead for both data depositors and data users was emphasized. It was suggested that NIH
 ICs work together to simplify and harmonize the deposition and access requirements of their repositories. The Study-level Metadata Tiger Team charter was approved.<span style="font-family:'Arial',sans-serif; color:black"></span></p>
</div>
</body>
</html>

Collective Board Meeting Summary: Members considered whether and under what conditions HEAL studies producing multiple data types should deposit their data into one single or multiple data  repositories. The importance of unique identifiers, the challenge

Selecting a repository for multiple data types

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<p class="MsoNormal"><b>Collective Board Meeting Summary: </b>Continued with four breakout groups to finish reviewing assigned categories and fields from the last meeting before moving on to review a new set of assigned fields. Each group then shared one or
 two key points of input during a group discussion. Proposed the formation of a Tiger Team (TT) to workshop the Study-Level Core Metadata topics surfaced by the Collective Board. Shared the draft TT Charter.</p>
</div>
</body>
</html>

Collective Board Meeting Summary: Continued with four breakout groups to finish reviewing assigned categories and fields from the last meeting before moving on to review a new set of assigned fields. Each group then shared one or two key points of input d

Study-level core metadata (3 of 3)

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<p class="MsoNormal"><b>Collective Board Meeting Summary: </b>Captured feedback from members on the 3rd annual HEAL PI meeting. Discussed the Translator program’s relevance to HEAL. Discussed and collected valuable feedback on the CEDAR template and how study
 teams will interact with it. Began reviewing and capturing feedback on individual metadata fields and their descriptions.</p>
<p class="MsoNormal"><b>&nbsp;</b></p>
</div>
</body>
</html>

Collective Board Meeting Summary: Captured feedback from members on the 3rd annual HEAL PI meeting. Discussed the Translator program’s relevance to HEAL. Discussed and collected valuable feedback on the CEDAR template and how study teams will interact wit

Study-level core metadata (2 of 3)

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<p class="MsoNormal"><b>Collective Board Meeting Summary: </b>The approaches of 1) beginning with
<i>study</i>-level metadata and 2) scraping existing metadata from CT.gov, NIH reporter, etc. were viewed positively. At the same time, strong feedback was received on the need for
<i>variable</i>-level metadata to harmonize and combine studies. There was a question as to whether caregivers/patients are realistic target audiences for metadata search on the Platform, given the technical nature of field names. While the use of a CEDAR template
 was well received, there was concern about the amount of time it will take studies to complete the ~50 manually-curated fields. The comparison to completing a CT.gov submission was discussed. Suggestions were collected on how best to communicate and launch
 the HEAL Study-level Core Metadata Model v1.0.0.</p>
</div>
</body>
</html>

Collective Board Meeting Summary: The approaches of 1) beginning with study-level metadata and 2) scraping existing metadata from CT.gov, NIH reporter, etc. were viewed positively. At the same time, strong feedback was received on the need for variable-le

Study-level core metadata (1 of 3)

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<p class="MsoNormal"><b>Collective Board Meeting Summary: </b>Discussed use cases to ensure the Board has a broad and collective understanding of the different customers for the Data Ecosystem and their needs. Members shared additional use cases. Discussed
 HEAL’s data sharing model to establish a common vocabulary and solid understanding of the model and its implications. Members shared challenges with and opportunities to achieve sharing, collaboration and secondary use goals within HEAL’s distributed data
 sharing model.</p>
</div>
</body>
</html>

Collective Board Meeting Summary: Discussed use cases to ensure the Board has a broad and collective understanding of the different customers for the Data Ecosystem and their needs. Members shared additional use cases. Discussed HEAL’s data sharing model 

Data Ecosystem use cases & distributed sharing model

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=utf-8">
<meta name="Generator" content="Microsoft Word 15 (filtered medium)">
<style>

</style>
</head>
<body lang="EN-US" link="#0563C1" vlink="#954F72" style="word-wrap:break-word">
<div class="WordSection1">
<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>
</div>
</body>
</html>

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

favicon.ico

U.S. Geological Survey

Data standards are the guidelines by which data are described and recorded. In order to share, exchange, combine and understand data, we must standardize the format as well as the meaning.

HEAL Data Stewards

[HEAL Semantic Search (HSS) 2.0](https://www.healdatafair.org/resources/semantic-search) is now available, bringing a refreshed interface that makes it easier to explore related studies, variables, Common Data Elements (CDEs), and biomedical concepts from a single search; compare how concepts and variables are defined and measured across studies; and access insights from 20 newly added data dictionaries, over 1000 HEAL studies, and 233 CDEs. Get started today by [entering a search term](https://www.healdatafair.org/resources/semantic-search) relevant to your research.

Explore HEAL studies, variables, CDEs, and concepts in [HEAL Semantic Search (HSS) 2.1](https://www.healdatafair.org/resources/semantic-search)!

The HEAL Collective Board meets once a month with HEAL Data Ecosystem teams to discuss and provide input on strategies, approaches and needs for building the HEAL Data Ecosystem and promoting data sharing and reuse.

Collective Board Meetings

Past Events