Why Participatory Medicine?

Why the Journal of Participatory Medicine?

Participatory medicine requires that a range of health care stakeholders act on their understanding of the critical contribution of patients and caregivers to the effectiveness of their care. We asked four leaders in health care to describe their views on participatory medicine. Each author defines differently the term and the challenges it poses to others in their field. This colorful collection of ideas, examples, assumptions and recommendations is a microcosm of the larger discussion taking place nationally about how health care has changed, might change, and must change and the emerging role of individuals, sick and well, in its success. Together, they illustrate the scope of the task the journal has taken on in publishing a range of articles that we hope will help shape those changes. —JG & CWS

Why Health Care Professionals Should Practice Participatory Medicine: Perspective of a Long-Time Medical Editor

Participatory Health Care: Perspective from a Nurse Leader

What It Will Take to Embrace Participatory Medicine: One Patient's View

Why Purchasers Should Care About Participatory Medicine

Participatory medicine is a product of its time: advances in medical technologies place increasing responsibility on individuals for their health care, while advances in different technologies make it increasingly possible for them to assume those responsibilities without attending medical or nursing school. Both kinds of technologies are tools designed to contribute to better outcomes. But the technologies do not constitute participatory medicine. Rather they enable it. Without tools—insulin pumps, comparative quality ratings, in-home dialysis, and online patient groups, for example—participatory medicine would simply not be possible. Bern Shen describes the environment that has enabled the idea of participatory medicine to germinate. —JG & CWS

Bio-Socio-Technical Underpinnings of Participatory Medicine

Participatory medicine will owe part of its success to the technologies that have the potential to remove treatment, symptom management, administrative, and communications burdens from individuals and clinicians while maintaining the critical interpersonal interactions between them. Out of the steady stream of new devices, programs, gadgets, and applications, which will make a difference in the health and lives of patients? We hope to build the journal as a resource for critical reviews of technologies that support and facilitate participatory medicine. We realize it will be no small undertaking to put together a process that will allow for the review of a substantial number of technologies over time, reflecting the experience of different types of users. Amy Tenderich of DiabetesMine and Tom Merritt of CNET—both with extensive experience in tech review—recommend some of the practices and parameters that will make this possible. —JG & CWS

What Can Technology Reviews Contribute to Participatory Medicine?

Reviewing Health Tools: A Community Matter

It is no trivial matter to launch a new journal in this hyperactive media atmosphere. It is expensive, time consuming, and complicated. You need a clear goal, a felt need, a vast community of people interested in and capable of producing high quality work, and an even vaster audience that finds the work compelling. The challenge is greater when the subject of the journal is new and when the potential audience is composed of people whose interests, motivations, training, experience, and roles vary wildly. Kurt Stange was named as the first editor of the Annals of Family Medicine seven years ago and confronted many of these challenges with grace and wit as he and his colleagues slowly forged a presence for that journal. We asked him to reflect on his experience as it relates to the challenge facing the growing community of people interested in participatory medicine and in this journal. —JG & CWS

The Journal of Participatory Medicine: Setting its Sights on a Community of Practice

Participatory medicine describes the processes by which health information technologies, drugs, and procedures come to influence an individual's health. The methodologies available to measure processes in health care are sometimes amenable to randomized controlled trials but often are not. And so by necessity, the rigorous research we believe must be the sentinel feature of this journal will not always conform to that ideal. But the aberrations from that ideal must be carefully considered. Larry Green has thought deeply about what constitutes "good" evidence throughout his career, particularly when directing the CDC's Guide to Community Preventive Services. He describes the challenge the journal faces in setting a high bar for quality research, while recognizing the demands of applied, process-driven measurement of effects. —JG & CWS

The Field-Building Role of a Journal About Participatory Medicine and Health, and the Evidence Needed

The journal's core value of participation by individuals in all aspects of health care means that the process of patient-driven research will be a subject and object of work that we publish. Gilles Frydman's career as a pioneer in the development of online medical communities has allowed him to observe closely the new strategies and methodologies of participatory research. He provides a snapshot of the current status of efforts initiated by patient groups that invest their energy and creativity in collecting, aggregating, and analyzing data that they hope will save their own lives. —JG & CWS

Patient-Driven Research: Rich Opportunities and Real Risks

We are committed to creating a journal that shapes the future. To that end, we question certain traditions of scientific publishing that have already begun to be disrupted by open access, open source, and creative commons copyright policies. These disruptions easily fall in line with our underlying mission of promoting participatory medicine. Yet one area that remains highly controversial in the world of journal publishing, which is a cornerstone of evidence-based medicine and consequently the practice of medicine, is the process of peer review. Though much studied in recent years, there is little evidence of its value and some indication that the traditional means of review inhibits scientific progress. We asked Richard Smith and Peter Frishauf, both editors of extraordinary experience and stature, to advise us on how we can establish policies that make use of what they have learned about peer review and reputation systems to fashion a journal that is credible and useful. —JG & CWS

In Search of an Optimal Peer Review System

Sidebar: Reputation Systems: A New Vision for Publishing and Peer Review, by Peter Frishauf

Participatory medicine extends far beyond the clinical encounter. Former patients and patient advocates have valuable insights to contribute to the processes by which scientific findings are transformed into safely delivered, effective procedures, drugs, and technologies. There is some recognition of this value: lay people are now members of a few NIH study sections, many FDA drug approval panels, an increasing number of governing boards of practices clinics and hospitals, and as reviewers for a couple peer-reviewed journals. Lay participation by patients, caregivers, and advocates has a long history in a few notable institutions, despite the challenge of bridging the language and culture gap between professional and patient concerns. Musa Mayer, a veteran boundary-spanner, reflects on her experiences as "the patient at the table." —JG & CWS

A Seat at the Table: A Research Advocate's Journey

Building a new interdisciplinary, applied field of research and practice is not solely an empirical problem. The contours of participatory medicine will emerge from the interplay between experimental findings about groups of people and accounts of the experiences of individuals interacting about health care. The journal will publish case studies and narratives as well as research findings. But just as there are clear expectations about what constitutes high-quality research reports, there are—or should be—clear expectations for high-quality narratives and case studies. Ellen Ficklen has critically read thousands and edited hundreds of narratives for Health Affairs and offers observations for both authors and reviewers about the characteristics of an excellent narrative. —JG & CWS

"Here's the Story. . .": Essential Elements of Essential Narratives About Health Care

We joke that "achieving" participatory medicine will take a village if not a major metropolitan area. Participatory medicine is currently a loose collection of ideas and values. Its requirements have not been clearly specified, its unintended consequences are not fully explored, and the research agenda that will drive its adoption is not yet developed. We aim to make progress on all of these through the journal. We believe, however, that this progress will depend on a growing community of people—professionals and nonprofessionals—who have a stake in moving this agenda forward making use of evidence and experience. We asked Joe Kvedar and David Kibbe, prominent physicians who have contributed extensively to technologies that enable participatory medicine, to map out what they think should be included in its research agenda. This essay serves as the first of many that invites you to contribute to a coherent, comprehensive agenda. —JG & CWS

Building a Research Agenda for Participatory Medicine