Multiple Sclerosis Patients Can Be a Great Resource for Health Care Companies

  • Yesterday, I attended The Atlantic’s 2011 Health Care Forum in Washington, D.C.  Distinguished speakers included Peter Shumlin, Governor of Vermont, Ron Wyden, Senator from Oregon, and Directors, Presidents, and CEO’s of prominent organizations, corporations, and healthcare institutes in the United States.  The ballroom at the Willard InterContinential Hotel on Pennsylvania Avenue was filled to the brim with well over 200 people (who also represented CEO’s, presidents, directors, etc of interested health care companies and parties interested in reforming the delivery of health in our country). 

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    40 individuals were invited as media representatives and I was humbled to be one of those 40.  It was a new experience for me and I was a bit excited to be sitting next to folks whom had previously only been names mentioned in weighty health policy articles.  For example, I sat with Darrel G. Kirsh, President & CEO of the Association of American Medical Colleges, and Victor Dzau, Chancellor of Health Affairs of Duke University and President & CEO of Duke University Health Systems.


    The three large panel discussions included:

    • Health Care 2020: Reform, the Deficit, & the Future of American Health Care Policy
    • Integrated Care: Can Coordinating Service Lower Costs and Improve Quality?
    • The Future of Medicine: Physician Education, Research, and New Models of Care
    • Behavioral Economics: The Role of Patients and Caregivers in Health Care


    It wasn’t until the end of the day that patients were even mentioned and unfortunately many in the audience had already left the event.  My guess is that there were approximately only 50-60 people remaining.  No patient was included on a panel which by title would imply a significant discussion of what patients and caregivers can do to effect better health care. 


    I need to re-watch the video I recorded to be completely objective, but my original impression was that there was great discussion of how the mis-behavior of patients negatively impacts the economics of health care and how physicians need better financial incentives to encourage better behavior from their patients.  There was lots of discussion about compliance, adherence, and how traditional educational programs are ineffective. 


    It just seemed like an upside-down discussion to me, sitting up front and center, waiting for the Harry Johns, President & CEO of the Alzheimer’s Association, to throw a bone to what patients (and their caregivers) can actually do positively to effect change and curb costs within the system.  Earlier discussions in the day emphasized that significant shifts in the way the health system reimburses care and how technology can be used will be necessary in helping us (really the healthcare companies and professionals) to make any progress toward improving health and health care in our country.  I agree.


    But I also feel that patients are such an underutilized resource when it comes to making changes NOW!!  Just look at what we are doing online on blogs, forums, twitter, facebook, etc.  When I think of all the fellow patients who are seeking answers to their questions and concerns online, it is apparent that there are significant disconnects when it comes to getting the care and education we need to take control of our health. 


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    I am very fortunate to have access to excellent neurological care with professionals who have been rather forward-thinking in how they approach satisfying the needs of their patients.  Even before my MS diagnosis was made official, I was invited to attend the monthly “newly diagnosed” patient meetings run by the dedicated MS nurse on staff and my neurologist.  These meetings came to be as the MS nurse was seeking a way to be more efficient in the office.  They have a large practice and by bringing together patients during meetings in which to present information, provide education, offer open-ended Q&A sessions, all with the added benefit of a moderated support group.  The goal was to save time during office visits which was spent repeating the same things over and over.  The monthly meetings save time in the office and money from within the health care system. 


    It is the foundation which I received during these monthly meetings which indirectly shapes what I share online with our MS community.  The time my medical professionals spent with me and others in our group has touched many more people than they could imagine.  I know this absolutely. 



    We, the patients, are an important force in improving the health care system from within.  But to do so, we also need a voice.  Every forum or conference such as the one yesterday should include a patient, not just a representative from a patient advocacy group, but an honest-to-goodness, in-the-trenches, been-there skin-in-the-game live patient.   This is something which the Society of Participatory Medicine (of which I am a founding member) aims to accomplish.  Slowly we’re getting there, but we’ve got a long way to go.  In the meantime, let’s continue to learn how to be more participatory in our own care.


    We deserve it.


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.


Published On: April 08, 2011