Health Equity & Access to Learning (HEAL) Workgroup
Terrie Wheeler
Co-Chair
Weill Cornell Medicine
Joshua Rubin
Co-Chair
University of Michigan
Our Mobilizing Computable Biomedical Knowledge (MCBK) Manifesto begins, “Knowledge has the potential to improve healthcare, the health of individuals, and the health of populations. Every decision affecting health should be informed by the best available knowledge. For moral and ethical reasons, it is imperative that each and every member of society have access to what is known at the time they are making health-related choices and decisions.”
Grounded in this recognition that knowledge is power, the Health Equity & Access to Learning (HEAL) workgroup seeks to ensure that such power becomes democratized as it is digitized. Biomedical knowledge and information technology shall serve as keys to unlock the power of all people to advance their own health and the health of others.
Working to realize better health for all, anchored in empowering individuals to make better informed health decisions, our HEAL workgroup aims to mobilize diverse stakeholders in an ongoing and active engagement around the value proposition of Mobilizing Computable Biomedical Knowledge (MCBK). In the context of person-centered Learning Health Systems (LHSs), we envision the creation and perpetuation of a robust CBK ecosystem that encourages public-private partnerships, supports open standards, generates value for users, and engenders equity.
A foundational element of our effort harnesses communications and engagement with stakeholders as necessary prerequisites in order to establish an equitable, trustworthy, and FAIR (findable, accessible, interoperable, and reusable) CBK ecosystem; we will promote its value as a tangible and empowering benefit for all stakeholders. Our collaborative work lies largely in promoting the value proposition of CBK creation, use, curation, deployment and assessment.
Our HEAL name explicitly expresses our overarching goals of embracing vigilance in promoting health equity as a central MCBK value, and synergistically fusing such efforts with our paramount intent to ensure access to learning about MCBK. Our workgroup will collaborate with other national and global MCBK workgroups as we work collectively to advance our
shared core value that every decision affecting the health of individuals and populations should be informed by the best available knowledge.
Historically, libraries have served as societal repositories of knowledge; transdisciplinary library science has organized and rendered such knowledge accessible and actionable, empowering individuals and engendering learning communities. Paradoxically, as Internet hacktivist Aaron Swartz noted in the 2008 Guerilla Open Access Manifesto, digitization has been utilized by the powerful to lock up knowledge generated by many, making it accessible only to a select few. Our HEAL workgroup aims to fuse the spirit of the library community with the vision of MCBK in order to ensure that the health-advancing promise of LHSs is driven by diverse stakeholders and rendered equitably accessible to all.
Goals
Our HEAL workgroup aims to:
Identify and engage with diverse stakeholders representing all aspects of CBK, to ensure that their voices and perspectives are included.
Build momentum around CBK through communication strategies and outreach.
Discern where there are vulnerabilities or gaps in knowledge and communication that function as barriers to accelerating creation, use and deployment of CBK.
Investigate and prioritize opportunities to collaborate with existing networks, communities and resources to advance CBK and the ecosystem we wish to create, and to promote the value of CBK for the stakeholder communities with which we partner.
Raise consciousness in order to ensure that CBK assets do not perpetuate discrimination or bias that results in adverse impacts on or the exclusion of populations or defined groups in a community.
Understand the current MCBK landscape.
Identify opportunities within the landscape that have the greatest effect in supporting the growth of the MCBK movement.
Develop actionable and tangible opportunities to expand the MCBK community.
Who?
Our HEAL workgroup engages:
“Library” communities – librarians, library scientists, custodians of knowledge
“Creator” communities – professional societies, accrediting bodies, entrepreneurs and businesses
“Hosting and dissemination” communities – publishers, libraries, commercial brokerages
“Consumer” communities – healthcare providers, clinical care delivery systems, healthcare provider and consumer advocacy organizations
“Funding” communities – federal, charitable, philanthropic, association-based, and for-benefit entities that support innovation and equity in healthcare
“Industry Vendor” communities engaged in the commodification of CBK, who may also function in creator, hosting, dissemination or funding roles
These communities are not mutually exclusive and there is necessarily overlap in areas of engagement and activity.
Authors: Deborah Swain, Chris Cunningham, Danielle Colbert-Lewis, and Charlotte Cox (NC Central University, Durham, NC)
Abstract:
Following MCBK pilot training in 2021-22 that was supported by a grant from the Institute of Museum and Library Services (IMLS), we designed and developed an open education resource (OER) platform to be accessible and sustainable for global users. Pilot students and development partners included librarians in medical libraries and information science graduate students in the US and from Canada. The OER collection provides full access.
Materials include:
Overview of Mobilizing Computable Biomedical Knowledge including manifesto and learning health systems cycle
Open access publishing including introduction by editors, sample articles, and detailed instructions for submitting to the Learning Health Systems Journal
Community of Practice (CoP) for healthcare researchers, developers, and librarians with guidance on collaboration and details about systematic reviewing (PICO and PRISMA standards) and scoping reviews; plus, basic concept of a metadata model for knowledge objects to support access
Special topics include bias in AI and machine learning, guiding principles for MCBK technical infrastructure; entrepreneurial publishing (tiered interactions and exploration), and trust and policy efforts for expanding MCBK
Special topics include bias in AI and machine learning, guiding principles for MCBK technical infrastructure; entrepreneurial publishing (tiered interactions and exploration), and trust and policy efforts for expanding MCBK
National Library of Medicine (NLM) roles related to computable knowledge support
Currently the OER resources for MCBK are housed at the North Carolina Digital Online Collection of Knowledge (NC Docks): https://libres.uncg.edu/ir/nccu/clist.aspx?id=41690. Technical support was provided by UNC-Greensboro and NC Central University’s head of Research and Instructional Services Librarian, Danielle Colbert-Lewis (dcolbert@nccu.edu). Under her supervision, the collection will be moved after December, 2024.
Papers and Publications
Health Equity Podcasts
This list was curated by Lorena Juarez , MLIS and Scott Thomson, MS, MLIS, AHIP, the library director at Rush University Medical Center.
Northwestern:
Podcast: SkinnyTrees: Center for Health Equity Transformation: Feinberg School of Medicine
SkinnyTrees: Lift Health for All — is a podcast from the Simon Research Lab at the Center for Health Equity Transformation at Northwestern University Feinberg School of Medicine hearing voices from the research and community world with a focus on health equity. Conversations and interviews will discuss the importance of achieving health equity, highlighting health disparities, and exploring innovative ways to improve health for all.
47 episodes
Mayo Clinic:
RISE for Equity - Mayo Clinic Press
Podcast series with leading physicians, scientists and innovators from Mayo Clinic and beyond in candid conversations about what it’s going to take to transform health care for a more just, more equitable future.
2 seasons; season 1 has 8 episodes and season 2 has 11 episodes
UChicago
Frankly. is a podcast that explores the health and wellbeing of youth from the perspectives and lived experiences of young people on Chicago’s South and West sides. It has an emphasis on Sexual and Reproductive Health.
7 episodes
University of Illinois – Chicago
Better Together Podcast | College of Medicine Chicago | University of Illinois College of Medicine
The BETTER TOGETHER podcast team is a group of globally-minded medical students, residents, and faculty joined together by the mission of health equity for everyone. The podcast was started to share stories and pearls of
wisdom from colleagues working in global health while making an impact on their community.
13 episodes; topics include: refugee care, vulnerable populations, rural healthcare delivery, etc.
Matter Health:
MATTER is a global healthcare startup incubator, community nexus and corporate innovation accelerator headquartered in Chicago. This podcast highlights a broad array of perspectives from the conversations they’re had with entrepreneurs, change makers and industry thought leaders.
66 episodes; covers a major range of topics but has a miniseries called “Advancing Health Equity”
NRC Health:
Listen to podcasts on patient experience in healthcare | NRC Health
Lots of topics but nothing that focuses on health equity. The focus seems to be consumer insight, relationship building, and technology within healthcare.
This American Life:
List of some potentially relevant episodes:
Now What? - rising costs of healthcare
Nicholasville, Kentucky - someone talks about potentially losing their health insurance
The Devil Is in the Details. And There Are So Many Details. - Access to reproductive healthcare following post-Roe abortion laws in Idaho
NPR News:
Podcasts : Health & Fitness : NPR
It has a large podcast directory that also allows you to limit it by topic. These are the podcasts they have listed under “Health & Fitness”
Topics include reproductive health, rural healthcare, healthcare intersection with lifestyle
FDA:
https://www.fda.gov/consumers/health-equity-forum-podcast
The FDA Office of Minority Health and Health Equity Forum podast series is a platform for experts to come together and have meaningful conversations around health topics that impact the live s and well-being of diverse communities. The series will also help to raise awareness about health issues and disparities impacting the health of diverse populations including minority consumers/patients and spark conversations of your own.
16 episodes
AHA Institute for Diversity and Health Equity:
https://ifdhe.aha.org/health-equity-podcasts
The American Hospital Association has a list of podcasts that dive into health equity related issues. They go back to 2020.
American Medical Association Prioritizing Equity podcast:
https://edhub.ama-assn.org/ama-center-health-equity/pages/podcast-ama-prioritizing-equity
The Prioritizing Equity podcast explores the disproportionate impact of health inequities on marginalized communities in the United States. This podcast sheds light on the root causes of health inequities and offers valuable lessons for racial justice and health equity from leading voices in health care.
44 episodes
Sylk Soto:
https://www.sylksotto.com/blank
Dr. Sylk Sotto is a nationally and internationally recognized scholar and transformative leader whose commitment lies in advancing inclusive excellence in academic medicine and the health sciences. This is a list of several interviews and conversations she’s had revolving around health equity and disparities.
The Bridge Podcast:
https://www.youtube.com/playlist?list=PLf5TFMW2PWhKdIEaP2F9xN213vrkTrv9_
The official podcast for the University of Maryland Baltimore School of Pharmacy PATIENTS Program. The PATIENTS Program is the bridge between the Community and Researchers. The PATIENTS Program created this partnership to help researchers listen to the community’s voice in order to build a bridge to an effective learning healthcare community.
81 videos; podcast episodes can also be found on streaming platforms
IHME’s Global Health Insights
https://ihme.podbean.com/page/2/
Covers trending topics in global health with IHME’s Global Health Insights podcast. Our health researchers explain the significance of new studies, share data related to current events, and help understand the story behind the numbers.
University of Rochester – Medical Center:
https://www.urmc.rochester.edu/institute-innovative-education/ideal/podcasts
The IDEAL Podcast started as a way to hear from community members and learn through different perspectives. These sessions shed some light on areas where we can improve as individuals and move forward to be more inclusive.
8 episodes