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.