Keywords: Participatory medicine, research, evidence-based medicine, patient engagement, e-patient.
Citation: Sands D, deBronkart D, Martin-Sanchez F. Our field advances: participatory health research library project to begin. J Participat Med. 2017 Feb 4; 9:e2.
Published: February 4, 2017.
Competing Interests: The authors have declared that no competing interests exist.
The field of participatory medicine, first declared by the Society for Participatory Medicine in 2009, has reached an important milestone: the creation of a research library for the field at Weill Cornell Medicine, in collaboration with our Society for Participatory Medicine (S4PM).
This is the first formal academic recognition that participatory medicine has matured to the stage where researchers, practitioners, and institutions need a robust and organized evidence base. The library will establish the baseline of existing literature, enabling the identification of gaps in knowledge, and will ultimately fuel generation of hypotheses and theoretical frameworks to guide practice and research.
This new library is a collaboration with Weill Cornell Medicine, particularly its Division of Health Informatics, and is led by S4PM member Professor Fernando Martin-Sanchez, PhD, FACHI, FACMI.
“The best possible future for medicine”
The organizers, leaders and members of the Society for Participatory Medicine (S4PM) have always believed that the best possible future for the medical professions must necessarily include the contributions of activated, engaged patients. In hundreds of posts and articles at our blog and in the Journal of Participatory Medicine we have documented the sociological change underway, made the case for medicine to welcome patient engagement, and advocated for policy change to support the best possible outcomes. Now, this new research library will strengthen all our work by providing ready access to literature supporting our initiatives.
Stages of a Field: From Inception to the Institute of Medicine
Participatory medicine is a formalization of work done since the 1980s by “Doc Tom” Ferguson MD, editor of the magazine and book Medical Self-Care. At the birth of the Web in 1994 he was medical editor of the Whole Earth Catalog’s millennium edition, and soon after he published the book Health Online. He was a true visionary who instantly saw that patient access to information and peers would turn healthcare on its head — a trend that would later be documented in depth by anthropologist Susannah Fox at the Pew Internet and American Life Project. Fox’s studies would become known as the first reliable sources of data about what patients do and don’t do online.
The trend was recognized also by the Robert Wood Johnson Foundation’s Pioneer Portfolio, which funded a multi-year project for Ferguson to document what he was observing as patients and their communities achieved unprecedented results in partnership with their clinicians. In this work, Ferguson accumulated a growing community of friends and colleagues, whom he called the “e-Patient Scholars Working Group,” who finished the project after Ferguson’s untimely demise in 2006 and published it as a white paper called e-Patients: How They Can Help Us Heal Health Care. Tom defined e-patients as those that were engaged, empowered, educated, and enlightened. 
In 2009 those colleagues formed our Society, and they and other colleagues published articles that began to define the field, such as “Why Participatory Medicine?” by Esther Dyson, “Why Health Care Professionals Should Practice Participatory Medicine” by longtime JAMA and Medscape editor George Lundberg MD, and “In Search Of an Optimal Peer Review System” by 25-year BMJ editor Richard Smith.
In September 2012 the Institute of Medicine (now the National Academy of Medicine), the peak body of academic medicine in America, created the need for participatory medicine when it announced a profound change in the nature of the patient-clinician relationship. In its landmark report, Best Care at Lower Cost, the authors declared four pillars of the future of medicine, including the need for partnership with “e-patients”:
Engaged, empowered patients — A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team. 
In February 2013 the Institute of Medicine again, this time with support from the Gordon and Betty Moore Foundation and the Blue Shield of California Foundation, convened the workshop, Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement. The Proceedings were later published in a report. The event gathered patients and experts to consider the central roles patients can play to bring about progress in all facets of the U.S. health care system. According to the workshop participants, evidence strongly indicates that when patients are fully informed and engaged in making decisions about their care, patient satisfaction goes up, results improve, and health care costs go down. In conclusion, in an efficient health care system, care choices are democratized and based on the best evidence. 
In spite of these recommendations, and although our body of anecdotes has been incessantly growing, advancement of the field has been stymied by the lack of a well-known and well credentialed reference library for practitioners and researchers to use. The S4PM-Weill Cornell Research Library will serve that need.
Organizing the Field’s Knowledge
The Society for Participatory Medicine will work with Weill Cornell to identify key references throughout the literature in areas related to participatory health interventions, best practices in patient participation, quantified benefits (both clinical, such as disease activity, and patient-reported outcomes), etc.
Each referenced article will be annotated with key points including the study design, type of intervention, disease or health condition, number of participants, outcome measures or main findings, among other. Users will be able to search by keyword and browse the annotated search results, greatly accelerating their hunt for relevant and applicable evidence.
Supporting the Pillars of S4PM’s Work
While the library’s creation signals a turning point in the Society’s evolution, it also sets the stage for the next level of the Society’s work.
In 2012, the S4PM board declared four pillars, summed up in the acronym CARE: Community; Advocacy; Research; Education. While primarily supporting research, the S4PM-Weill Cornell Research Library will bolster all four, directly supporting advocacy, research, and medical education (both academic and continuing), and enriching the discussions in our online community, which will in turn lead interested members to see openings where further research is needed.
Audiences who will benefit include:
- Health professions students of all types, including public health students, social workers and care coordinators, especially at Weill Cornell
- Health policy advocates
- Government personnel
- Innovators and entrepreneurs
- Patients and family caregivers
- Journal authors
- Health care professionals
- Leaders of medical practices, hospitals, health system, and ministries of health
- Health plans (insurance)
In particular, we hope to provide ammunition to convince earnest skeptic health care professionals and leaders who ask, “Is there any evidence for this?” In addition, S4PM anticipates that its mission will be enhanced by the benefits on potential sponsors, donors, and corporate members.
The Road Forward
In coming months we will develop a steering committee for this project to define scope and processes. We will ultimately need to develop an editorial board and processes to guide literature selection. This is a large project and will require the engagement of resources of both S4PM and Weill Cornell Medicine. Ultimately we hope to have a resource like the Cochrane Library, but focused on various aspects of participatory medicine.
The formation of the S4PM-Weill Cornell Participatory Health Research Library is the start of an exciting chapter in the evolution of both the field of participatory health and the Society for Participatory Medicine. The evidence collected and organized in this project will provide the foundation on which new work can begin, to formally redefine the role of the patient in our medical paradigm and a new approach to participatory care.
- Ferguson T, e-Patients Scholars Working Group. e-Patients: How They Can Help Us Heal Health Care. 2007. Available at: http://e-patients.net/e-Patients_White_Paper.pdf. Accessed December January 30, 2017. ↩
- Committee on the Learning Health Care System in America; Institute of Medicine; Smith M, Saunders R, Stuckhardt L, et al., editors. Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Washington, DC: National Academies Press; 2013 May 10. ↩
- Roundtable on Value and Science-Driven Health Care; Institute of Medicine. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: National Academies Press; 2014 Jul 17. ↩
Copyright: © 2017 Danny Sands, Dave deBronkart, and Fernando Martin-Sanchez. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.