Participatory Medicine: Must You Be Rich to Participate? Abstract Keywords: Participatory medicine, concierge medicine, digital divide, uninsured patients.Citation: Graedon J, Graedon T. Participatory medicine: must you be rich to participate? J Participat Med. 2012 Feb 1; 4:e2.Published: February 1, 2012.Competing Interests: The authors have declared that no competing interests exist. “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.[1]” Our lofty definition of participatory medicine requires patients who are both interested and capable of taking an active role in their health care as well as providers who have time to listen and work together in a partnership with patients.
We fear that this movement may be leaving too many people behind. Providers frequently complain that their biggest challenge is time, whether in the ER or in the clinic. The exception to this model is concierge care. My 8-Point Participatory Philosophy: What Makes Me a Participatory Patient. Abstract Keywords: Participatory medicine, e-patients, patient-physician communication, online communities.Citation: Kastner K. My 8-point participatory philosophy: what makes me a participatory patient. J Participat Med. 2011 Sept 6; 3:e40.Published: September 6, 2011.Competing Interests: The author has declared that no competing interests exist. Background The first time I got a copy of my medical record, it was when the doctor handed it to me. She then wrote down which website to go to, and what not to look at because she was afraid it would “freak me out.” Perhaps her approach suggests participatory medicine at its finest.
Her error was one of assumption: She assumed I understood the terminology. Being participatory has given me strength and, at times, sapped my strength. My 8 Points of Participatory Medicine 1. 2. 3. If I’m referred to a specialist, I repeat the above process. 4. 5. 6. 7. 8. Copyright: © 2011 Kathy Kastner. “Experience-Based Co-Design” Helps Providers Improve Care. The Rewards of Being a Participatory Health Care Provider. Abstract Summary: A recent narrative by Nancy Drinan in the Journal of Participatory Medicine describes an excellent example of the participatory medicine model.
The Drinan family was challenged to care for two similarly disabled sisters with complex medical and social needs. By becoming an engaged advocate for the care of her sisters and fostering a well-functioning health care team, Ms. Drinan dramatically improved the health of her sisters. In this commentary, I give the provider’s perspective and touch on some of the principle tenets of participatory medicine that guided our work together.Keywords: Advocacy, developmental disability, guardianship, brain disease, epilepsy, frontal lobe impairment, metabolic damage, behavioral challenges, mental health, shared decision making, collaborative decision making, participatory medicine.Citation: Hoch D.
Nancy Drinan describes a remarkable journey in her recent article published by the Journal of Participatory Medicine. Mutual respect. American Medical News Explores Social Media’s Pitfalls and Opportunities for Physicians. Abstract Keywords: Participatory medicine, social media. Citation: O’Malley K. American Medical News explores social media’s pitfalls and opportunities for physicians. J Participat Med. 2010 Sep 27; 2:e9. Published: September 27, 2010. Competing Interests: The author has declared that no competing interests exist. American Medical News, the American Medical Association’s news publication for physicians, posted an article exploring the special challenges posed by social media to physicians and medical students.
O’Reilly notes that most medical schools and hospitals do not have guidelines for ethical online behavior, and although the AMA and the American Medical Student Association are working on guidelines, they have yet to adopt any. In the absence of formal guidelines, this article offers physicians good advice and case examples for how to approach social media, as well as a sensible list of “do’s and don’ts.” Copyright: © 2010 Kathleen O’Malley. Report on the “Reassembling Health Workshop: Exploring the Role of the Internet of Things” Abstract Summary: This review reports on the workshop “Reassembling Health: exploring the role of the Internet of Things.” The aim of the workshop was to bring together professionals from different disciplines in order to envision future scenarios enabling patient participation, home-, mobile-, and self-care. In particular, this report offers a discussion of some of the assumptions of the current medical model, and how their renegotiation might make possible the exploration of new participatory health care practices.Keywords: Design, self-care, patient participation, patient empowerment, chronic-disease, internet of thingsCitation: Storni C.
Report on the “reassembling health workshop: exploring the role of the internet of things”. J Participat Med. 2010 Sep 27; 2:e10.Published: September 28, 2010.Competing Interests: The author has declared that no competing interests exist. This workshop was part of the event “Are You Ready for the Internet of Things?” Fig 1. References Acknowledgement. Shifting from Shared to Collaborative Decision Making: A Change in Thinking and Doing. Abstract Summary: Despite its theoretical appeal, the concept of shared decision making in the clinical encounter has yet to translate into practice. In this article we revisit this approach and suggest an alternative we have labeled “collaborative decision making,” which may lead to more equitable and more favorable outcomes. We define collaborative decision making as a process of engagement in which health professionals and patients (and their loved ones) work together, often using information and communication technologies to understand clinical issues and determine the best course of action.
Moving beyond the two-way knowledge exchange proposed in the shared decision making model, we outline a scenario in which the exchange of information leads to the development of a stronger partnership between the patients and the health professionals. Introduction “Some problems are so complex that you have to be highly intelligent and well-informed just to be undecided about them.” –Laurence J. Who’s a Peer? Improving Peer Review by Including Additional Sources of Expertise. Abstract Summary: The credibility, authority, and relevance of prestigious journals are being questioned in the light of an apparent increase in publications marred by technical flaws or misconduct, despite having passed peer review.
To strengthen the review process, the Journal of Participatory Medicine proposes to allow health care users and other lay experts to participate in the shaping of new knowledge by providing feedback on the quality of the evidence. Enlarging the pool of reviewers in this way has several potential advantages.Keywords: Communication, expertise, knowledge, participatory medicine, peer review.Citation: Shashok K. Who’s a peer? Improving peer review by including additional sources of expertise. J Participat Med. 2010 Dec 8; 2:e15.Published: December 8, 2010.Competing Interests: The author has declared that no competing interests exist. Current Peer Review Capacity Is Quantitatively and Qualitatively Inadequate Broadening the Community of Reviewers References.
Why Participatory Medicine? Abstract Summary: 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. But that’s just a hypothesis, and one we want to test rather than assert. To test it, we need both to cover news of the field and encourage researchers and individuals to try things out and report on their efforts.
Keywords: Participatory medicine, user-generated data, self-quantifiers. Citation: Dyson E. Published: October 21, 2009. Competing Interests:The author has declared that no competing interests exist but has several aligned ones that deserve disclosure. In the business and technology world, you can read about the exciting ways that individuals are using the Internet and computers to manage their own health.
Thinking Back Probably. Evidence Education Edicts. Participatory Health Care: Perspective from a Nurse Leader. Abstract Summary: 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. As nurses, we also value the recognition that we bring unique skills and characteristics, what I term the nursing lens: an ability to view patients holistically in the context of their environment and daily experiences; to establish therapeutic relationships with a wide variety of individuals; to think in terms of systems and the big picture; to have a scientific basis for practice and a pragmatic view of what works.
Keywords: Participatory medicine, nursing.Citation: Disch J. As a novice nurse in the late 1960s, I entered the nursing profession passionately committed to “taking good care of my patients.” Fortunately, I had selected a work setting that was fundamentally based on collaborative relationships between nurses and physicians and with patients and their families. 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 of time demystifying gadgets for consumers. Some of the best practices for reviews of consumer electronic apply to the review of products for participatory medicine. Keywords: Participatory medicine, technology, products, reviews, testing.Citation: Merritt T.
Technology is awful. Even in the face of these frustrations, we’re able to accomplish so much more with technology tools than we can without them. The potential value of technological tools for medicine seems obvious, especially for patients. 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. References Open Questions. Building a Research Agenda for Participatory Medicine. Abstract Summary: 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. We provide here some issues for consideration in the development of such a research agenda for participatory medicine, reflecting our personal interests as physicians.
Patients, allied health professionals, researchers, and others will generate questions consistent with their own perspectives that will enlarge and enrich the agenda. This is a field in its infancy that, by definition—and according to the values that drive it—should be developed as a collaborative effort by all stakeholders, charting the course for the journal and the research it publishes. Published: October 19, 2009. Patient-Driven Research: Rich Opportunities and Real Risks. Abstract Summary: 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. While research projects conducted in a medical environment require supervision by IRBs (institutional review boards), no such limitation currently exists in PDR. This results in both greater immediacy and potentially harmful forms of bias in these research models. Citation: Frydman GJ. Published: October 21, 2009. The Journal of Participatory Medicine: Setting Its Sights on a Community of Practice. 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. 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.
Sometimes, JoPM’s voices will come from multiple disciplinary perspectives. The Need and the Forum References. Promoting Participatory Medicine with Social Media: New Media Applications on Hospital Websites that Enhance Health Education and e-Patients’ Voices. Abstract Summary:Background and Objective: The nature of health communication is changing as people increasingly seek health information on the internet. The objective of this study was to investigate how hospital websites utilize a variety of e-health tools; online communication technologies such as social media, video, podcasts, and interactive formats.Methods: An inductive content analysis was performed on the websites of 14 top-ranked US hospitals from January 5, 2011 to February 28, 2011.
A total of 1,330 web pages were analyzed to identify the types of online communication technologies utilized by hospitals to provide e-patients with health information.Findings: The findings provided an exploratory look at how hospitals provide web-based health information to patients. All hospitals used social media platforms such as Facebook, Twitter, or YouTube. Most hospitals offered web-based broadcasting of health information. Introduction Methods Results Category 1: Social Media Applications.
Social Media Use in the United States: Implications for Health Communication. Patient Empowerment: Myths and Misconceptions. Patient Participation: Current Knowledge and Applicability to Patient Safety. Social Media, Power, and the Future of VBAC. Re: I found it on the Internet” “I Found it on the Internet” Hugo Campos on NPR’s “On The Media” Read to the end… Our man Hugo Campos (see Friday’s post) is becoming a media star! TEDx, then MIT Technology Review, now NPR’s ”On The Media”! From SPM co-founder Joe Graedon, of People’s Pharmacy, on the SPM listserv – see also the items below … ———- Forwarded message ———- From: Joe Graedon Date: Sun, Jan 22, 2012 at 5:01 PM Subject: Re: [SPM-MEMBERS] HUGO on “On The Media!”
–LISTEN!!! We just heard Hugo’s interview on “On The Media.” It was FABULOUS! Hugo has carried the banner beautifully. Here is the link: And now….who is going to blog about this on e-patients? Dave??? Joe & Terry On Jan 22, 2012, at 4:57 PM, e-Patient Dave deBronkart wrote: I spoke with @HugoOC today and he told me - - MIT Technology Review interviewed him at TEDx Cambridge and did a big article on him. . - Then this week he was on NPR’s “On The Media”! Won’t it be great if this whole subject starts moving out to the general public??? E-Patients_White_Paper.pdf.