Peter Schmidt: The virtue of participating in your care – it serves others, too

This guest post by SPM member Peter Schmidt is long overdue. I asked him to write it months ago after discussion on our post Tips for Understanding Studies (Health News Review). Apologies for the delay.

If you’d like to submit a guest post, see our guidelines.

Peter Schmidt head shotI was speaking with a colleague the other day. He is one of the most pro-patient engagement physicians I know, and he had just given a talk where he discussed patient “compliance.” I said to him, “Why were you discussing compliance instead of engagement?” He responded, “In my practice, I seek engagable patients. I love to have engagable patients. However, some patients are just not up to it. Some patients can only be dealt with in the context of compliance. They are not smart enough or just don’t care enough to be engaged.” This post is not for those patients.

This post is for patients who want to be engaged.

In February a physician commented on a post here that most patients shouldn’t read journal articles. This is true: most patients shouldn’t read them. But if you are reading this, you are probably not most patients.

Throughout history, patients have contributed meaningfully to medical research. While Edward Jenner, MD, is credited with the smallpox vaccine, Benjamin Jesty, a local farmer, used cowpox to protect his family from smallpox before Jenner started his work. Not all medical breakthroughs come from physicians, and, like Jesty, non-physicians are often inspired by a personal connection to a disease. This story is told in a 1998 article in the International Journal of Infectious Disease written by two cancer doctors, Carry Gross and Kent Sepkowitz called, “The myth of the medical breakthrough.” The point of the article is that the “hero” stories of medical discovery, propagated by institutions like the Nobel Committee are myths. Edward Jenner stood on the shoulders of giants.

There’s a subtext: the hero stories of physicians treating you are myths, too. There’s a team of mentors, consultants, and support staff behind your physician or surgeon, and there are a lot of patients that came before you and with whom your doctor honed his or her skills. You are serving this role for the patients who come after you. If you participate in your care, you can serve this role better.

Non-physicians like Andy Grove and Sergei Brin are adding a lot of sophistication to research in Parkinson’s disease. Our system typically assumes that, for example, a dermatologist is better suited to understand a new therapy in, say, cancer than a physicist. In my experience, this is not a given: a friend of mine is a biophysicist, and understands biology pretty well, radiation extremely well, and what happens when the two mix better than just about anyone.

Physicians are more engineers than scientists: like engineers, they have a set of tools they use to manage a set of problems. When an opportunity for science comes up, when a paradigm change occurs because of a new discovery, many physicians (but not all) struggle with the task of figuring out which articles are good and which are not. For example, all the information necessary to figure out that Vioxx was dangerous was in their FDA filings. Still, it took a team in Oregon lead by Mark Helfand, M.D., a professor and editor in chief of a journal called Medical Decision Making, to figure out that Vioxx should be pulled from the market. This is hard stuff, and any help you can give your doctor can only help. If your doctor doesn’t feel this way, find a new doctor.

I put on a meeting recently where a patient in the audience asked a question that indicated that her physician was about 10 years behind on the research on the link between melanoma and Parkinson’s. Anyone reading abstracts on PubMed could have set this doc straight, but none of his patients were. Patients shouldn’t treat themselves, but they should be knowledgable participants in their care. This can be constructive, as it was in e-Patient Dave’s case, or defensive [self-defense], as it was at my meeting.

I am not one of “those patients,” either. I have done a lot of stuff in medicine, and wound up with a condition that just happens to be outside of anything I’ve studied. Despite being a health professional, I am just a patient for my own condition. However, I am an e-patient. I have a greater interest in my good outcomes than anyone else, and I am the head of my own health team.
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Peter Schmidt, Ph.D. is the Vice President, Programs and Chief Information Officer at the National Parkinson Foundation where he oversees NPF’s research, education, and outreach initiatives.  In this role, Dr. Schmidt has helped lead NPF’s Quality Improvement Initiative and has collaborated in research on quality care, hospitalization, and generic medications in Parkinson’s disease.  Schmidt joined NPF from Cronus Partners, where he was an investment banker focused on innovation in healthcare.  During his tenure at Cronus, he served as interim CEO of a company that developed information systems for genetics laboratories.  Previously, Schmidt was the President of a company that created software for chronic disease management and Chief Operating Officer of a non-profit joint venture of Oxford, Stanford, and Yale universities delivering on-line education.  Schmidt was educated at Harvard and Cornell and had a post-doctoral fellowship at New York’s Hospital for Special Surgery where he studied biomedical engineering.  Schmidt has a patent on a total knee replacement and has written widely on topics ranging from healthcare technology to corporate finance.  He led a successful advocacy effort to secure funding for post-traumatic stress disorder care for veterans in 2005 and donated electronic medical records used to provide indigent care in Louisiana after Hurricane Katrina.

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11 Responses to “Peter Schmidt: The virtue of participating in your care – it serves others, too”

  1. Bev M.D. says:

    Excellent post. My brother also has Parkinson’s disease, and is an e-patient par excellence; he knows far more about it than I do. I provide him access to my logons to my subscribed medical journals. Recently I was thinking that if all physicians, in an act of peaceful protest against the guild mentality, were to provide their online logons to patients to their subscribed journals, much more potentially life-saving knowledge would be promulgated. In addition, the journal submissions would be subjected to crowd knowledge rather than the demonstrably inadequate peer review system now extant.

    I urge all physicians reading this post to provide their online medical journal logons to their patients.

  2. Peter
    What a great story. I am a journalist and have spent the last four years researching and writing about patient empowerment using digital communication technology.I have a book that will be released this summer, e-Patients Live Longer, The Complete Guide to Managing your Healthcare Using Technology, with very specific tips and suggestions and many anecdotal stories. The majority of healthcare consumers, particularly the baby boomers who will overwhelm the healthcare system in the next decade, just do not know how to become empowered patients. Kudos to you as a doctor who seeks engaged patients. Hopefully you can convince many of your colleagues who resist this trend to recognize that the engaged patient is a win win for everyone.

    • Paul LaGorce says:

      I’m really glad to read of your forthcoming book e-Patients Live Longer. I checked on Amazon to see if they were previewing it and they were not. I should think that your book could be an online publication since a significant portion of your market could be reached by ads in e-patient sites or by ads directed by Google’s “aimed ads” capability which is really very good as you may have already discovered.

      • Paul,

        Thanks for the support on my book. It should be out by the end of the summer and it will be published as an e-book, in softcover and in hardcover. It will be available on all of the online book sites including Amazon. I will send you a note when it is available.

  3. paul bearmon says:

    Hi

    I doubt that would be legal – but either way not ethical. Those are paid subscriptions.

    However, there are good alternatives. Medscape is available to public. CME download offers lectures for a cost as do many institutions, and the magazine Science and Translational Medicine offere very up to date complex information for a subscription. ScienceDaily -Health available on igoogle is excellent. Many journals offer apps from which one can then catch abstracts – again on igoogle. The latter are free.

    Paul

  4. fred trotter says:

    There is now a way to do this without “giving out the password”.

    You can and should get your own subscription, as a patient:

    http://www.cautiouspatient.org/blog/item/47-realities-of-medical-care-series-45-of-patients-get-only-partially-treated.html

    -FT

    • Marcela Musgrove says:

      Before resorting to gray area of “giving out password” have to put a plug in for libraries–they spend thousands of dollars for institutional subscriptions to access medical journals and
      librarians are trained to help people find information and navigate databases like PubMed and MedLine. My academic medical center has public access stations, librarians who are willing to spend hours one-on-one or to groups explaining how to use the tools and even a health by mail program where they can send information to any resident of Oregon. Yet they are incredibly underutilized by consumers and I don’t think most clinicians would think of considering librarians as a potential ally in helping their patients.

  5. The way I read the post was not that physicians should be giving their login info. That is like giving someone your logon info to your email, or other semi personal info. At the same time we patients should have access to research materials. and, that is not too hard to find. Sometimes you do have to pay for an article but typically, you can get enough info through the national library of medicine and PubMed. (and/or once you find something appropriate you can get articles through your local, university, or hospital library and their relationships with other libraries or ask your doctor if they can get the article). I have google searches setup for particular topics. Sometimes there is too much info to process.

    I know with my main team/fallback team of doctors, I bring up articles and we usually can have a dialogue, sometimes you have to pierce through the “glass ceiling” with some doctors who are intimidated by a patient who may be more aware of articles in a particular area, but if you (as a patient) demonstrate that you are not in the of one-upsmanship game with your doctor you (I) can (have) a great dialogue. That does not mean that what I or they always bring to the table is what we agree upon, or they explain why something I think may be relevant is not. But that is essence of all great dialogues in all areas of life. And, it is that dialogue the way in which I have weeded out doctors, even some of the best in the particular field of my illness. I no longer have the bandwidth/patience to be spoken down to or have doctors dismiss other doctors I resepct. Partnerships in all areas of life are critical to a successful relationship. I have stopped judging success by the best outcomes because (for whatever it is worth) I have learned it doesn’t always end with a fairytale ending, but at the end of the day, I can look my team of doctors in the eye and not have any regrets. (I may not be happy with the ending). That to me is the key to a great successful doctor patient relationship!

    It is not about login codes, that to me, is a short tsided view of the issue, and it may be an appropriate interim solution (if both parties agree), but it is not the ultimate one. Doctors are not our hostages, they are our critical partners.

  6. Pete says:

    There are some good journals that adopt much more open-access strategies, such as the International Journal of Cell Biology (http://www.hindawi.com/journals/ijcb/). I try to promote the use of open-access journals more than violate user agreements that may have implications to my job and my assets…. There is some good stuff in IJCB, including an interesting series on DJ-1 in Parkinson’s disease by Curt Freed. Of course, my DJ-1 experts tell me that Freed’s article isn’t as revolutionary as some think.

    People who read scientific articles regularly, regardless of their field, probably have access to medical journals from the same source. People who don’t read scientific articles regularly can benefit from learning about the history of over-stated findings and to separate positive findings from outrageous claims.

    For people–patients or anyone–who want to learn about reading science, I strongly recommend a crash-course in the fundamentals, such as reading Darwin’s On the Origins of Species. It is brilliant science and shows rather then tells how to frame an argument to convince the unconvinced. Steven J. Gould used to say that you can’t be an educated person if you haven’t read Darwin (a claim for which there is some contradictory evidence…), and it is a classic illustration of the scientific method as it should be rather than is practiced. Audible has a great (unabridged) audio version. I also love to read (and re-read) Watson and Crick’s awesome Nature article (announcing the double helix) which is a marvel of understatement.

    Libraries are a great way to access journals; a librarian may be able to help people to understand not just the article but the context.

  7. e-Patient Dave says:

    Re Bev’s suggestion on bypassing login rules: you MUST read this short post, from Paul Levy’s blog today. It’s two short anecdotes. The first includes this: “Journals clinging to the subscription model are easily disrupted by connected e-patients. I have often provided journal articles to countless patients and advocates and obtained them when my own library doesn’t have a journal for some reason.”

    Hm!

    (The second one’s priceless, too – a med school dean caught plagiarizing Atul Gawande in his commencement address – caught by students, who followed along on their smartphones!)

    Note to establishment: the world has changed.

    And it needs to change more.

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