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New journal aims to reframe doctor-patient collaborations in health care

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Journal of Participatory Medicine home pageSwallow the doctor’s diagnosis whole, or spend weeks plowing through the primary research literature at a medical library—at the risk of alienating your physician. Those were two of the primary choices available to lay people diagnosed 20 years ago with a serious disease. Today, motivated patients can use the Internet to dive well beyond WebMD, by joining online support groups and research-mining communities that often know more detail about etiology and treatment nuances than just about any medical specialist.

Countless well-educated patients and even some doctors and medical researchers have now embraced this approach to health care, part of a burgeoning movement called participatory medicine, but questions remain about the efficacy of this tactic and its push for stronger collaborations among patients and their doctors and other health care professionals.

The Journal of Participatory Medicine, a free online, open-access publication launched October 21 by the Society of Participatory Medicine at the Connected Health Symposium in Boston, aims to bring some science to bear on these questions, while also fortifying the field’s base and amassing relevant information and evidence.

Managing Editor Sarah Greene, who helped launch and build out The New York Times‘s Health section online and various digital start-ups, said the new journal aims to "stimulate and publish research that shows that outcomes are improved when patients take responsibility for their health and are involved in the decision-making process. The research might point the other way—we don’t know. But we think there’s a lot of anecdotal evidence that health care could be transformed when patients take responsibility for their health and are more central and really try to understand and even do their own research."

Only a handful of articles evaluating participatory medicine have been published, Greene said, adding: "We think that is one reason that some physicians don’t really buy into it. They’re not taught in medical school to think of patients that way. There’s a lot of patrician-oriented attitudes that are frightening to patients and makes them afraid to ask questions."

At least one physician, George Lundberg, editor of JAMA the Journal of the American Medical Association from 1982 to 1999, wrote in the Journal of Participatory Medicine‘s launch issue that he thinks those attitudes will change by "enhancing physician and patient self-awareness and cultural understanding that will blunt biases and improve communication."

Lundberg obviously favors participatory medicine, which is growing in relevance as members of Congress currently work toward passage of a health care reform bill. Even with passage, true medical reform will only come with more patient involvement with their physicians, including open sharing of their medical records, Lundberg wrote. With open medical records and other databases cataloguing treatments and symptoms, patients can, for instance, make more informed decisions and help in avoiding treatment errors.

Gilles Frydman, a member of the journal’s editorial board who was pulled into participatory medicine because of life-threatening complications his wife had during pregnancy and also later when she was diagnosed with breast cancer, coined the term participatory medicine and wrote the Wikipedia entry for it. He was also part of an earlier group founded by physician and consumer-focused medical writer Tom Ferguson, who started Medical Self Care magazine and long pushed, nearly single-handedly, for the "e-patient"—empowered, equipped, engaged, enabled.

Ferguson and his colleagues started a white paper on the concept (pdf). After his death from multiple myeloma in 2006, the participants regrouped and brought in Wired magazine’s founding executive editor Kevin Kelly to brainstorm how to spread the message. The journal was the answer, they decided.

Other luminaries involved include Alan Greene, credited as the first doctor to have a Web site, who is the journal’s deputy editor. (He is no relation to Sarah Greene.) The group also enlisted a patient advocate, Jessie Gruman, founder of the Center for Advancing Health, and physician Charlie Smith of the University of Arkansas for Medical Sciences to serve as co-editors.

Frydman’s enthusiasm for participatory medicine comes in part from founding the Association of Online Cancer Resources in 1995, which now distributes six million emails monthly to dozens of communities of people discussing all kinds of cancers and associated conditions. Considered the father of online patient communities, he now spends a lot of his time tracking Twitter trends and building a site that aggregates the large-scale social patterns for analysis.

The journal, like ACOR, was not created as a political statement, Frydman says. "I hope for the same with journal. Now we are much smarter. We have 15 years of experience. We can see historical trends. This is no longer the story of a small grass roots movement. It is having a really big impact," he remarks. "At this point we have to understand what we do, what is good and what is not good."

Journal board member Dave deBronkart, a kidney cancer survivor since 2007 who has taken on the moniker "e-patient Dave" and dedicated his post-cancer life to spreading the participatory medicine message, is highly visible online, like Frydman. As co-chair of the Society of Participatory Medicine, deBronkart testifies at federal and other policy hearings on the topic and generally tries to spread the e-patient meme. He’s also a regular poster to Twitter and to the Society for Participatory Medicine’s blog.

"People asked JFK how he become a war hero. He said, ‘It’s easy. They sank my boat.’ How did I become an e-patient? Well…," deBronkart says.

One of deBronkart’s messages is that people talk at health industry meetings about patients as if they are not in the room. "’Patient’ is not a third-person word," he says.

Still today, many people suffer from rare diseases, and "no one is hearing from them," Frydman says. "They are still in their silos. There is no reason for the public at large to hear anything about what they are doing, but it’s a large movement when you put together all those groups and they have already demonstrated in past 20 years that you can really transform the health care system if you give more power to the patients."

Submissions are now coming in for the journal’s second issue, set to bundle out, for MedLine indexing purposes, in the first quarter of 2010, Greene says, although articles will be peer-reviewed and published online as they come in.

Eventually, Greene aims to post user-generated content, along with conventional journal papers. Multimedia platforms on the journal site will enable users to upload videos, tutorials and educational information on effective approaches to participatory medicine, patient narratives, and other types of patient, physician and health care professional contributions. 

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  1. 1. Albert Reingewirtz 6:19 pm 12/11/2009

    Thank you so much! I am going to read this. It is exactly in my spirit of treating my gout and my pre-diabetes. I non-longer use allopurinol, it raised my blood glucose instead I take dry parsley, more efficient to hold my gout in check with no side effect beside the highest concentration of Vitamin K. Almost no meat and a low glycemic index diet. I still do not have diabetes in spite of 5 uncles and a cousin died from this disease. My Dr.’s always have a certain look when I list dry parsley as part of my medicine.

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  2. 2. jerryd 7:13 pm 12/11/2009

    After caring for my mother I found doctors not focused on her but giving out average medicine, not medicine to her real needs. Also with 4-6 doctors each giving her 2-4 pills each the interactions were worse than the disease.

    She got ‘Fibromialgia’ but when I took Lipitor it gave me the same systems. Then telling my doctor that stopping taking it he said I should keep taking it!! I’m sorry but when something makes you so weak and in pain, you stop taking it should be a no brainer. I told them switch me to another satin or I wouldn’t take any at all. After all Lipitor was only a few % better than Zocor and Zocor was 1/10 the price too.

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  3. 3. Albert Reingewirtz 7:20 pm 12/11/2009

    When I stopped taking Allopurinol my Dr. called me screaming that this against Doctor’s advise. That I would lose my kidneys. Then she ordered a blood test a month later. My blood sugar was in the normal range again. "How did you know?" "It was the only difference when my blood glucose shot up." More than 3 years later I still did not had a gout attack thanks to dry parsley and diet.

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  4. 4. DRRICH 8:30 pm 12/11/2009

    As a doctor, I have no problem with dried parsley, or any other homeopathic treatment, as long as it works and does more good than harm. Unfortunately, people think that medicines are dangerous and natural products are all safe. Sure oatmeal helps your cholesterol, by about 5 %, but I need a treatment to do 50-70%.
    I am all in favor of having information that people can understand and I would help support efforts to that end. Keep in mind that a little knowledge is a dangerous thing. Some patients stop their statins because they read about a potential liver problem they can cause. In the last 25 years, I have prescribed statins hundreds of times, but I have never seen anyone die of liver disease caused by the medication. I have, however, seen many people die of untreated heart disease. The biggest problem with popular knowledge will be to judge what is normal, what is common and how to weigh the benefits versus the risks. We have a very "risk intolerant" society. I have seen people read a surgical disclosure form and refuse the procedure based on the printed information, while their chance of dying on the car ride home is 10,000X that of the procedure (not to mention the untreated medical condition).
    I also wonder how many people will use this source of information to find a way to help their disease to avoid the diet and exercise which I prescribe, especially for gout and diabetes.

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  5. 5. Albert Reingewirtz 8:51 pm 12/11/2009

    I never had a Doctor like you! I prescribed to myself diet and exercise and the dry parsley finding it is the highest content of Apigenin (spelling) taking care of uric acid. Previously I had the same situation with hydrochlothiazide raising my blood glucose. Gone! My biggest fear is diabetes because of my genetic inheritance. So I avoid everything that may increase my risk. It is tough! Diet to prevent diabetes and the one to prevent gout? I have no found an answer yet anywhere, not from Doctors and not from the internet. So I am going blind exercising cutting all fat from chicken and meat and eating only very rarely a finger of the stuff. So far I am wining I am 75 year young! Yesterday (I used a jack hammer all morning to get rid of some cement). I believe in science and critical thinking. Those two things should be primary medication for everybody. I check every medication for side effects and their interaction with other medications. Doctors are non-longer Gods. They are humans and can make mistakes so it is good to check for everything getting in my mouth.

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  6. 6. bsudduth 5:05 pm 12/18/2009

    Keep in mind that a little knowledge is a dangerous thing. That is true for everyone -including doctors. As we enter an age of personalized medicine, doctors will only have a small percentage of the knowledge important for the genetic and metabolic peculiarities of a given patient. Each person is going to have to be worldwide expert on himself/herself. The person’s knowledge, insight from patient support group, and information gleaned from credible online sources must then be coupled with physician guidance to create the most appropriate wellness/recovery strategy for the individual.

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  7. 7. TaylorMess 9:20 pm 07/13/2010

    I completely agree that yes Participatory medicine is a wonderful idea, however in my opinion shouldn’t be given too much gravitas, as mentioned in the points beforehand.
    It is a healthy exercise to gain a greater understanding of your illness and would be quite comforting to hear from people who have been in your position. If you as a patient have a qualm with your treatment and may know of an alternative medicine or therapy, it is in the end up to yourself as to what treatment you go for. Although ultimately I think your doctor’s advice would in a vast majority of cases be the best course of action.

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