Abstract

Summary: The Journal of Participatory Medicine (JoPM) seeks to foster a community of cooperative health care. The opportunity is to create a forum for recognizing commonality while sharing differences. Another journal, the Annals of Family Medicine, also launched in the information age, provides some parallels for engaging diverse constituencies in an international transdisciplinary dialogue around scientific papers, essays, reviews and commentary. JoPM has great potential to be a gathering place for those interested in interactive approaches to improving health care and health.

Keywords: Participatory medicine.

Citation: Stange K. The Journal of Participatory Medicine: setting its sights on a community of practice. J Participat Med. 2009(Oct);1(1):e10.

Published: October 21, 2009.

Competing Interests: The author is Editor of the Annals of Family Medicine.

Building Community

The Journal of Participatory Medicine (JoPM) seeks to build a community of those seeking a cooperative model of health care. Diverse readers will have different understandings of the meaning of community and of cooperative health care. At the intersection of hundreds of understandings, a new forum will emerge for what is, and what makes a difference in, health care and health.

The founders of this new journal seek to amplify and harmonize the voices of health care professionals, patients, and caregivers. These diverse voices come from the same people. Who is not at some time a caregiver, or a patient, or a health care provider?

Sometimes, JoPM’s voices will come from multiple disciplinary perspectives. In these moments, the community will look like an edited book—each chapter written by an “expert”; each chapter an island. At these junctures it will be up to the reader to bring coherence to the story.

At times the voices will come from those who have begun to work together around a common problem or purpose. At these moments, the journal’s community will feel like an interdisciplinary team—like the team at a cancer center. The pathologist presents the tumor findings; the surgeon, radiation oncologist, and oncologist discuss their different tumor treatment options; the research nurse presents the relevant clinical trial protocols; the social worker presents the sociocultural and mental health considerations. More rarely, the patient’s and family’s voices are heard and the family physician raises the gaze to the particulars of a patient and a family and a community known over time.[1]

Every now and then the voices will bring together diverse perspectives, but because they have been listening for awhile, participants will begin to use a common language. Not discipline-specific language, but new words that describe resonant ideas that have emerged from paying attention—from working, experiencing, and making sense across usual boundaries. These voices will share the experience of participation. They will describe something that so often is missing from health care that the participants will want more. They will be willing to withhold judgment a little longer, listen a little harder, and contribute to the emergence of something greater than themselves.

The Need and the Forum

A gnawing need for the forum proposed by JoPM is evident—from considering how we are currently conditioned to react, to what currently passes for public dialogue. We have been trained to eschew reflection and deep discussion so that we can more readily assert, and be more easily manipulated. For the sake of efficiency we have partitioned our lives and our communication. The predigested information pabulum we feed on adds to our sensory waistlines without exercising our intellect, emotion, or spirit. We confuse information with knowledge and seek knowledge when we really need wisdom. Witness our visceral reaction to the many sound bites we are fed each day. Witness our impatience with experience or thoughts that don’t fit our existing worldview. Witness the growing intolerance in the systems that grow out of our increasingly shallow thoughts and conversations.

The forums proposed for JoPM are an antidote for the fragmenting influences on modern health care.[2] The journal seeks contributions that relate to people, health (care) professionals, health institutions, and context. The founders are asking for pieces that relate a broad spectrum of evidence that includes the personal, the interpersonal, systems, and the natural world.[3][4] The journal has forums for research, editorials, narratives, case reports, reviews, media watches, and letters. It aspires to an open peer review process that epitomizes participation by diverse constituents.

By defining a cooperative model of health care, JoPM provides an opportunity to engage diverse stakeholders in co-creating understanding about how health is lost and won, how healing can be known as the transcendence of suffering,[5][6][7][8] how health can be known more as relationships[9][10] than as a commodity,[11] and how health care can be about both health and caring. I hope that the word “medicine” in the journal’s title will not dissuade those in the public health communities and those who work on the social and environmental determinants of health from participating.

A Brief Case Example

Jesse Gruman, co-editor of JoPM, asked me to reflect on my recent experience in starting the Annals of Family Medicine that also aimed to develop a participatory community. My reflection is focused on the opportunity of the new Journal of Participatory Medicine, and represents only my personal view and recollected experience. Hopefully, there is something helpful in the recent experience of a fellow traveler on a similar path.

The Annals of Family Medicine started because of the felt need for a forum for primary care research—a forum that was not fully filled by the existing commercial journals. The Annals was fortunate that leaders of six (now seven) family medicine organizations valued this forum sufficiently to dedicate their members’ dues to make the full content available free to everyone via the Internet.

Though I had no desire to be a journal editor, the opportunity to make the peer-reviewed content widely available, and to invite members of diverse constituencies to interact with the content, was enticing. So we developed a dedicated team of editors who manage a cross-disciplinary peer review process, and a diverse editorial advisory board of those who care about understanding and improving health care and health, and who believe that primary care[12][13][14][15] and a generalist approach[16] are good places to start.

We used our existing relationships to cast a broad net into the unknown to invite early submissions from diverse constituents and disciplines and countries[17] since a journal quickly becomes defined by its content. We were fortunate that the first issue was able to feature the quintessential primary care problem of comorbidity,[18] the patient voice on barriers to self-care,[19] controlled trials of patient education for informed decision making about prostate cancer screening,[20] improved inpatient diabetes care,[21] and an analysis of why a Native American community was able to achieve an astoundingly low rate of cesarean delivery.[22] The first issue also featured a methodology study,[23] studies using both quantitative and qualitative methods, and a guest editorial that opened: “It is said that when students enter medical school, they care about the whole person, and by the time they graduate, all they care about is the hole in the person.[24]” The inaugural issue also contained an essay co-written by a family physician and his patient, including a painting of the face of cancer as experienced by the patient.[7]

We asked diverse groups to contribute articles and to join in the online discussion of each article, and we synthesized those discussions in a regular editorial feature.[25] Sometimes the discussions are eloquent soliloquies that feel like the parallel play of 2-year-olds. Every now and then the discussion heats up and becomes truly interactive as the voice of patients, clinicians, educators, policymakers, families, and others share their lived experience, ideas, well-referenced arguments and anecdotes. Sometimes the voices are primarily from professionals, such as when the Future of Family Medicine Project[26] report caused a tsunami of reaction from health care professionals who were stimulated, threatened, or inspired by this vision and action plan for the future.[27] At other times, the voices of patients dominate, as when a study of the unmet care needs of adult survivors of childhood cancer[28] lit up the listservs of patient advocacy groups, and engaged thoughtful and heartfelt interactions with oncologists, cancer researchers, government funders, nurses, social workers, and primary care clinicians.[29]

The Annals has moved well beyond the inaugural relationships. The sponsoring organizations, editors, editorial advisory board, and publisher feel that we are stewards of a process that transcends our individual contributions.

Developing a community, even an online one, requires personal relationships. Community engagement seems particularly important for a journal that focuses on participatory health care. The organizers of JoPM are drawing on their personal contacts to get started. They are launching this precious idea of a forum for diverse, active participation in health care and health. They are waiting breathlessly for the idea to resonate with a few people—to create harmony and dissonance with varied forms of “evidence.” They yearn for the narratives and numbers that create this evidence to synergize the way a jazz band does—where people bring different instruments and experience together with a few basic principles to create something new and more inspired than their own solo performance.

The opportunity to create a community is being presented to us by the Journal of Participatory Medicine. It is up to those who see possibility in participation to make this forum into a platform for developing, challenging, and growing a cooperative model of health caring.

Acknowledgements

I am grateful to William L Miller, MD, MA and Benjamin F Crabtree, PhD for the conceptualization of multi-, inter-, and trans-disciplinary teams alluded to in the opening paragraphs. The opinions shared here are my own and do not necessarily reflect those of other participants in the Annals of Family Medicine.

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Copyright: © 2009 Kurt C. Stange, MD, PhD. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), 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.