Vol. 1, 2009

 

Editorials, Vol. 1, 2009

Why Participatory Medicine?

The job of the Journal of Participatory Medicine is to answer the question of “why participatory medicine?” It is our hypothesis that PM is good: it will lead to healthier, more empowered individuals, lower health care costs (through reduced need for health care), and a more productive, happier society overall.

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Editorials, Vol. 1, 2009

Why the Journal of Participatory Medicine?

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.

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Commentary, Vol. 1, 2009

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

All medical and health care is intensely personal: one patient, one professional, one moment, one decision. The patient is best served by fully participating. With American health care reform imminent, participation for self-preservation becomes even more important.

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Commentary, Vol. 1, 2009

Participatory Health Care: Perspective from a Nurse Leader

Most nurses inherently value the concept of partnership, of complementary expertise, of collaboration. This stems from our service orientation and our holistic view of situations and solutions.

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Commentary, Vol. 1, 2009

Why Purchasers Should Care about Participatory Medicine

Purchasers of health care—employers, union trusts, and government agencies—have experienced inexorable cost increases and stagnating quality results despite many efforts at payment and delivery system reform.

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Commentary, Vol. 1, 2009

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

I have the honor of writing this introductory piece for the Journal of Participatory Medicine (JoPM) from the viewpoint of a patient. To do this I must drop my academic titles and replace them with my qualification for the task at hand.

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Commentary, Vol. 1, 2009

Bio-Socio-Technical Underpinnings of Participatory Medicine

Participatory medicine (PM) is facilitated by technology, but a purely technical analysis of their interaction provides only a partial picture. Drawing on a rich body of social science research, this article examines how both socio-cultural and biological perspectives lend additional context and a deeper understanding of the role of technology in PM.

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Commentary, Vol. 1, 2009

What Can Technology Reviews Contribute to Participatory Medicine?

Abstract Summary: Technology can be a great aid to participatory medicine when it works well, but when it fails, it results in great frustration and can adversely affect outcomes. So, how do patients and professionals know which tech tools to try and which ones to leave on the shelf? At CNET, we spend a lot […]

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Commentary, Vol. 1, 2009

Reviewing Health Tools: A Community Matter

High-quality product reviews will be an important part of this new journal, with its focus on supporting and encouraging people to participate in their own health care. But how should we go about evaluating various interactive applications and devices that bill themselves as “health tools”? Health design advocate Amy Tenderich of DiabetesMine.com explores the definition of a “health tool,” and lays out parameters for a new kind of participatory product review process.

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Reviews, Vol. 1, 2009

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

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.

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Reviews, Vol. 1, 2009

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

A journal with “participatory medicine” in its name will challenge health care organizations, practitioners, care givers, and patients to examine their comportment and relationships. It will also challenge the scientists of medicine, health services, and patient education to re-examine their research methods and designs, because the participatory process will not lend itself easily to conventions of randomized controlled trials. The Journal will also be challenged by the shadow of impact factor scores with their bias toward academic rather than practical impact, and the need to report more fully on external validity. These challenges appear to be welcomed by the editors of this new journal.

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Reviews, Vol. 1, 2009

Patient-Driven Research: Rich Opportunities and Real Risks

Since the Internet’s earliest days, patients have used online resources to share experiences, learn about diseases and treatments, and become advocates. A newer phenomenon has seen a growing number of online communities evolve into centers of patient-driven research (PDR)—especially for orphan diseases. Thanks to Health 2.0 capabilities, various models of PDR are being developed, usually involving methods of data collection and aggregation that can eclipse RCTs as meaningful evidence. A radical shift from the classical research model, this may result in accelerated findings and dissemination at a fraction of the cost of classic medical research.

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Commentary, Opinion, Vol. 1, 2009

In Search Of an Optimal Peer Review System

Abstract Summary: After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value. Its downside is much more obvious to me than its upside, and the evidence we have on peer review tends to support that jaundiced view. Yet peer review remains sacred, worshiped by scientists and […]

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Commentary, Vol. 1, 2009

Reputation Systems: A New Vision for Publishing and Peer Review

Peer review as we know it today is broken. A better way may be to create an online reputation system to rate the quality of an author, editor, or reviewer’s online contributions on the Internet, and apply such a system to pre- and open post-publication peer review…

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Case Studies, Vol. 1, 2009

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

The story of one patient advocate and author who moved beyond her personal experience with breast cancer to focus on helping women with metastatic disease, which in turn has led to her further training and involvement with drug development, regulatory issues and other research issues.

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Narratives, Vol. 1, 2009

“Here’s the Story: …” Essential Elements of Essential Narratives About Health Care

The Narrative Matters section of the health policy journal Health Affairs publishes compelling first-person essays called “policy narratives.” Unlike other types of medical narratives, the health-related stories published in Narrative Matters incorporate issues related to health care policy, helping policymakers to see the human consequences of their actions. This is the story behind Narrative Matters and how it works.

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Reviews, Vol. 1, 2009

Building a Research Agenda for Participatory Medicine

The emerging phenomenon of participatory medicine seems to lead to improved health outcomes, but this is not yet supported by a robust evidence base. Fundamental questions about the participation of individuals—sick and well—remain unanswered. Only through the convergence of many diverse and novel modes of research can the richness and complexity of participatory medicine be made workable…

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