Note: an early version was published years ago, on the e-patients blog, when Participatory Medicine was a concept only few had heard about. The biggest change a few years later is that many people are using the term and are already changing its meaning, trying to remove most of its fundamental connection to self-care and to focus exclusively on the patient-doctor relationship. To some of us, this is a travesty.
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.
It is a paradigmatic shift & frames a view of medicine currently embraced only by a minority of patients and physicians. The mission of this site will focus entirely on advocacy, information, and tools to lead and accelerate change in the culture of health care to this participatory model.
This blog is fundamentally patient centric and all of the ideas presented here are designed to optimize the care received by the patient at any time. Since a majority of care is done through self-care, participatory medicine is deeply involved in understanding, cataloging, and scientifically assessing the parameters of self-care and its impact on the medical system.Read More
Most social media professionals focus on just one kind of participation: the creation of user-generated content. But people who create content represent an exceptionally narrow slice of the participatory landscape, which also includes people who consume user-generated content, comment on it, organize it, remix it, and redistribute it to other consumers.Creators are a small part of the landscape, with a disproportionate impact. You are far more likely to join a social network, watch a video on YouTube, make a collection of things you’d like on a shopping site, or review a book than you are to produce a movie, write a blog, or post photos online. You’re much more likely to consume User-Generated Content than you are to create it.
Forrester Research Social Technographics’Ladder remains the best descriptor of the way different audiences engage with social media online.
It introduced the concept of Conversationalists, those who use sites like Twitter, Facebook & update their status, dramatically changing the Internet landscape. In 2010, Forrester estimated this group represented 31% of the online population (compared with 70% who consume social content). While, in aggregate, 23% of people who engage in the social Web are creators in some capacity, the actual percentage of creators is much smaller on any given participatory site,
- 0.16% of visitors to YouTube will ever upload a video.
- 0.2% of visitors to Flickr will ever post a photo.
In 2006, researcher Jakob Nielsen wrote a landmark paper on participation inequality, introducing the “90-9-1” principle:
In most online communities, 90% of users are lurkers who never contribute, 9% of users contribute a little, and 1% of users account for almost all the action.
This kind of inequalities are also found on Wikipedia, where more than 99% of users are lurkers. According to Wikipedia’s “about” page, it has only 68,000 active contributors, which is 0.2% of the 32 million unique visitors it has in the U.S. alone.
Wikipedia’s most active 1,000 people — 0.003% of its users — contribute about 2/3 of the site’s edits. Wikipedia is thus even more skewed than blogs, with a 99.8-0.2-0.003 rule.
Participation inequality isn’t limited to the Web. Even the most popular participatory opportunities in medical institutions usually attract a small number of people who want to make a comment, meet others like them, or contribute to a knowledge base. The surprising thing about participation inequality is not that it exists in the real world but that it exists on the Web.
Some people, like me, believed that the ease of Web-based publishing tools would turn everyone into a journalist, a medical librarian, or a contributor to a wiki. But that’s not the case. There are some people who are drawn to create, but many more prefer to participate in other ways, by critiquing, organizing, and reading social content. This isn’t just a question of making creative tools as easy to use as possible. There are some people who will never choose to upload content to the Web, no matter how easy it is. Fortunately, there are other participatory options for them.Read More
I chose Lawrence Green’s article “The Field-Building Role of a Journal About Participatory Medicine and Health, and the Evidence Needed” for the Participatory Medicine Grand Rounds, because it addresses the issues at the heart of the deep impact of the network effect on the meaning of knowledge and the availability of data sets, all evidently transformed by the direct involvement of networked patients in the health care system.
In particular Lawrence Green thinks that
[the Journal] will 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. It 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.
This is the first of two posts about the inspiring Patients 2.0 panel I helped organized at Health 2.0 DC. This one will explain the rationale for organizing such a panel. The second will provide a link to all the presentations and to the panelist biographies.
A while back, while he entire country was wondering if “healthcare reform” was ever going to become a reality, I had a conversation with Matthew Holt about the need to have a patients-only panel at the Health 2.0 conference. Matt graciously accepted the idea.
The panel was originally organized to convey, from the patient viewpoint, a few ideas, based on the following facts:
- payment reform is not health care reform,
- nobody has more at stake in real health care reform than patients,
- patients are the most underutilized resource of the health care system and,
- meaningful reform won’t happen until the patients are at the center of the effort.
Each of the 6 patient advocates that were part of the panel showed us that meaningful reform happens one disease, one problem, one patient at a time.Read More
Lygeia Riccardi’s post today on The Health Care Blog begins: I recently applied for life insurance. The broker, whom I’ve never met, asked about my health history. “So you’ve just had a baby,” he began. I asked him how he knew. “You’re on Twitter.”Read More
Another guest post from Lisa Gualtieri, PhD, ScM, following her much-commented earlier post.
Lisa is Adjunct Clinical Professor in the Health Communication Program at Tufts University School of Medicine. Lisa teaches Online Consumer Health and Web Strategies for Health Communication. A social media user herself, Lisa (Twitter, LinkedIn) blogs on health and is Editor-in-Chief of eLearn Magazine, where she blogs on education.
I had an interesting juxtaposition of events. While waiting in Peets, a coffee shop in Lexington Center, I watched the friendly discussions between the baristas and customers. I then went to a doctor’s appointment, where a nurse stood typing at a laptop asking me a series of questions, including “Are you in pain?” and “Do you feel safe at home?” She didn’t look at me once as she read and typed.Read More