e-Patients Considered

e-Patients Considered

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In August, Susannah Fox posted an essay on the potential for every patient to be an e-patient.  Having observed some very serious e-patients at the World Parkinson Congress, a joint patient-professional meeting last week in Glasgow, Scotland, I think that Fox’s comment sells the true e-patients short.  The divide we should erase is not between e-patient and patient but between e-patient and professional.

Parkinson’s disease is the second most common neurodegenerative disease, after Alzheimers.  As with many neurological conditions, there is no blood test or scan that will show Parkinson’s or its progression, instead a movement disorders neurologist is a fellowship-trained master of observation, able to discern the impact of the disease on the daily lives of patients and to offer therapy, drugs, and coping strategies.  Introspective patients have the opportunity to observe everything (and more) that their neurologists see.  Parkinson’s disease offers a unique opportunity for patients to participate in their care, yet few do.

There’s a set of patients out there who are more than Googlers and abstract readers.  There are patients out their whose depth of knowledge in their specific condition rivals their physicians.  At the WPC, a speaker pointed out that the average North American medical school student spends just 9 hours on genetics.  I know patients who have spent more time than that in a single day.  There were patients at this conference who were former physicians, successful entrepreneurs, and scientists.  I see no prima facie reason to differentiate between a physician with Parkinson’s and the physician who treats him.  However, to say that all patients are e-patients is to denigrate the potential impact of these patients to contribute to their own care.

I had a conversation with a neurologist who is one of the most progressive, patient-centric physicians I know.  We were discussing the difference between a patient “participating” in care and a patient “complying” with instructions.  He said that he used both concepts for different patients.  Patients who participate in their care are ones who make decisions about their care, including whether or not to do what their physician instructs them to.  Patients who don’t “comply” are ones whose failure results from incapacity.  To deny the word “compliant” in all cases is to define John Nash’s carefully-evaluated decision to refuse treatment as the equivalent of a late-stage dementia patient’s failure to to remember his meds.  Some patients contest treatment advice while others forget.  It’s not the same.

The WPC organizers put a little thermometer in the conference schedule to show the level of science in each session.  At one of the “easy” sessions, Ron Pfeifer, a respected academic, addressed constipation at a level probably above that of many medical school courses.  At another, Joe Jankovic, a world-class neurologist, discussed medication selection and dosing decisions for a late-stage complication.  These talks, covering subjects and at depth usually reserved for academic researchers, were appropriate for e-patients and professionals alike.

We certainly need to raise our expectations of patients and e-patients alike, but people come with a wide range of knowledge and capabilities.  The patient-professional divide is based on the fact that many professionals believe that no patients are knowledgable about their condition, when, in fact, in many cases I know the patient knows more. Searching isn’t enough: one can find support in Google for the discredited notion that immunizations cause autism, for example.  In the e-patients white paper, Tom Ferguson identified e-patients, his “healthcare heros” as starting as knowledge workers who help themselves, friends, and family.  The first “e” in e-patient is “equipped.”  Not everyone is equipped with the capacity or predilection to participate in care.  The challenging thing for physicians is that you can’t always tell who is.

A positive goal for e-patients would be to get physicians to more broadly accept that there is a chance that the next patient they see could meaningfully participate in their care.  If we could get them to consider the participating versus complying distinction, that would be a step in the right direction.  There are too many instances of the internet perpetuating discredited idiocy for it to be a smart strategy to simply say that googling one’s condition is a test of patient sophistication.

2 thoughts on “e-Patients Considered

  1. When I attended the health 2.0 conference in San Fransisco, I met a number of “e-patients” so passionate about having better healthcare it was moving.

    One person, Hugo Campos told me he should have the right to all of his data…and why not?
    He writes from the perceptive of a cardiac patient with an implantable electronic device and the need to access his data. He talked about device recalls, patient data, etc. PHRs should give him this data.

    Patients who care about their health really need to be heard, technologists in healthcare should be listening to patients who really understand what needs to be done for their health. We are moving into an new era, where epatients exist!

    (Checkout Hugos blog if interested http://icdusergroup.org)

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