Abstract

Summary: Achieving the benefit of safe and effective health care has never demanded so much from so many. Each of us has a role, and that role is changing with advances in technology and the delivery of care. No player—patient, caregiver, clinician, administrator, or payer—is expendable in the effort to improve the prevention, treatment, and management of disease. This journal will build the field of participatory medicine by serving as a single source of articles and multimedia content that demonstrate and illustrate what it is and what difference it makes in health outcomes. We will dedicate our efforts in this journal to realizing the change this entails using the tools of science, critical review, consultation, experience, and consensus.

Keywords: Patient participation, patient activation, self-management, consumer roles in health care, primary care, medical education, nursing education, health education, health information technology.

Citation: Gruman J, Smith CW. Why the journal of participatory medicine? J Participat Med. 2009(Oct);1(1):e2.

Published: October 21, 2009.

Competing Interests: The authors have no conflicts of interest to report with respect to this article.

Achieving the benefit of safe and effective health care has never demanded so much from so many. Each of us has a role, and that role is changing with advances in technology and the delivery of care. No player—patient, caregiver, clinician, administrator, or payer—is expendable in the effort to improve the prevention, treatment, and management of disease.

But the need to transform health care from a professional service delivery system to a mutually shared enterprise in which individuals—sick and well—play an active role has yet to be fully recognized by many clinicians, other professionals, and the public. The development of new technologies streamlines medical, nursing, self care, and administrative tasks. And it allows us to communicate more efficiently and work to forge new ways of interacting with one another. But many people—professionals and individuals alike—remain unaware or unconvinced that their own behavior must change if patients are to realize the benefit of their care.

Changes in health care are inevitable. The question is, how can we ensure that all of those with a stake in the health care enterprise keep pace with and gain from new developments? What does health care look like when it welcomes and supports individuals’ involvement in their care to the extent they are able? What will it take to shift the culture of medicine and the organization of care to respond to this imperative? What are the implications for clinical training? What will make it possible for individuals to adapt to new expectations for active involvement and to act on their new responsibilities?

These are serious questions that require thoughtful consideration and a range of evidence to answer. Providing a venue for both is the purpose of the Journal of Participatory Medicine.

Participatory medicine is a cooperative model of health care that encourages, supports, and expects active involvement by all parties (clinicians, patients, caregivers, administrators, payers, and communities) in the prevention, management, and treatment of disease and disability and the promotion of health.

This journal will build the field of participatory medicine by serving as a single source of articles and multimedia content that demonstrate and illustrate what it is and what difference it makes in health outcomes. The types and categories of submissions that we will consider for publication can be found in the Author Guidelines. Because it is a new journal publishing multidisciplinary articles on topics within a field that has not yet been well defined, we have established the Parameters of Participatory Medicine that define the journal’s range of interest. We anticipate that these parameters will be refined as the field develops.

The Journal of Participatory Medicine will publish continuously. It will be freely and entirely accessible to the public. We invite ongoing conversation about all that we publish. Following the inaugural issue (due in early 2010), and except for single-topic special issues, we will publish submissions as they are reviewed, accepted, and edited. The journal will use the Open Journal System publishing platform developed by the Public Knowledge Project. We will use an all-electronic submission, editing, and publishing process. All research, clinical review, and case report submissions will undergo peer review prior to a decision to accept, reject, or reconsider after revision. We aspire to an open review process that initially will be voluntary. And each article will be followed by a series of open questions that invite comment.

This first issue is a collection of invited essays that will serve as the “launch pad” from which the journal will grow. We consider this introductory issue an invitation for you to join us as we create a robust journal that will serve a growing community of concerned individuals and professionals.

Our internal workings are designed to be participatory: as co-editors, we function as a team, Charlie as a physician and Jessie as a sometimes patient and permanent consumer, both with solid experience in journal editing and production. We work closely with the journal’s steering committee, editorial board, and advisory board—each composed of individuals representing the broad range of health stakeholders—to bring their best ideas to the table for consideration.

Our experience soliciting and editing the essays in this first issue demonstrate that the words “participatory medicine” mean very different things to different people. The authors come from a variety of backgrounds and have all publicly committed to ideas that are central to participatory medicine. Each one writes about an aspect of participatory medicine from their own perspective, but each describes a slightly different set of concerns with different implications for future action. This is as it should be: the task of the journal is to piece together, from among multiple disciplines, professions, settings, roles, and interests, the evidence and elements that will lead to a common vision—and eventually the reality—of health care that encourages, supports, and accommodates the participation of individuals in their efforts to live long and well.

We invite all clinicians, patients, caregivers, former patients, health plan and hospital administrators, employers, union representatives, teachers, entrepreneurs, politicians, and policy makers to participate as well. We are just getting started. Join us. Read. Comment on articles and send us feedback. Volunteer to review submissions. Submit your own work and your ideas.

As the editors, we share the belief that in order for people to benefit from the care available to them, health care must be participatory. The stakes of non-participation or ineffective participation are too high for individuals and the nation. We will dedicate our efforts in this journal to realizing the change this entails using the tools of science, critical review, consultation, experience, and consensus.

The Journal of Participatory Medicine is an official publication of the Society for Participatory Medicine, a new nonprofit organization dedicated to defining, shaping, and advancing the field. We acknowledge the group of determined, forward-thinking professionals led by the late Tom Ferguson, MD, that years ago began planning how to enable more effective provider/patient collaboration (see their White Paper, e-Patients: How They Can Help Us Heal Health Care). This journal is the result of Tom’s belief that health care must involve much more active collaboration between patients and providers.

Open Questions

1. What are the most intractable barriers people face to participating in their care?
2. What changes in medical and nursing education and certification will spark and support people’s willingness and abilities to engage more fully in their care?
3. Under what circumstances is participatory medicine inappropriate? Whose decision is this?
4. What are the general criteria information tools and technologies must meet in order to be considered an aid to people’s participation in their care?
5. Will open peer review likely be a help or a hindrance in the advancement of the journal and the field of participatory medicine?

Copyright: © 2009 Jessie Gruman and Charles W. Smith. 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.