Why are you here?

Topol

Dr. Eric Topol addresses E-health Opening session in Ottawa

Why would you invite a patient or member of the public to a major conference on health information technology (IT)?

Obvious though that answer may be to patient advocates – “nothing about me without me” – it is a question that merits some consideration.

In the not too distant past – say before 2010 – health IT conferences shared the same characteristics as major conferences in any medical specialty. Clinicians, people trying to sell things to clinicians, academics, health care managers and specialized media came together to discuss new research on what would help patients best. Patients sometimes atttended but usually as “Patient with ‘x’ condition” and a useful prop for someone’s research.

As the e-patient movement gained steam, it became clear health IT conference organizers had to at least play lip service to involving patients more. You could do this most easily by inviting an iconic figure such as e-Patient Dave or Regina (‘The Walking Gallery’) Holliday to address your meeting.

But organizers quickly learned that such individuals weren’t prepared to be just tokens. Having been invited in, these and other dedicated patient advocates have changed the very nature of health care debate.

The E-health conference which just wound up its first day of proceedings in Ottawa will have its own patient hero  – double-lung transplant patient Hélène Campbell-  addressing a plenary on the consumerization of e-health tomorrow.

But beyond that what should the E-health organizers be doing?

Inviting patients to oft-arcane discussions of electronic medical record interoperability, SNOMED, or data analytics featuring some truly mind-boggling charts may be the right – albeit cruel thing to do, but who gains from it?

And if you are going to invite a Patient, are you inviting them in their own right or as a spokesperson for a disease advocacy group or a regional constituency? And are you going to pay for their attendance or have them pay their own way?

Obviously patients are a major stakeholder in e-health and must have a voice when major decisions on strategic planning about e-health are taking place. But absent politicians – who are supposed to speak for the people – it is difficult to define who has the authority or right to speak for the patient community on this issue. And if a patient does attend who are they reporting back to and why?

This is not a challenge that is unique to e-health but is true of all general policy discussions concerning health care and the health care system.

Listening to futurist physician Dr. Eric Topol in the plenary presentation to E-health this morning, it is clear that if the democratization of medicine is truly here then we need to find a way to meaningfully involve the public in conferences that have traditionally been the domain of academics, health care providers and vendors.

Maybe e-patients are a legitimate new category of conference delegate at conferences about EMRs, just as they have become in social media conferences. But surely it’s a waste of time and effort unless the information they gain from the presentations and networking translate to informed decision-making in frameworks that actually allow them a voice.

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One thought on “Why are you here?

  1. I have a different take on patients attending conferences (or, as I have, on advisories, round-tables, steering committees and the board of a Regulatory College). It’s what I bring to conferences, rather than what I get. Every experience has resulted in my providing greater insight – well-received every time. One of my favs (that almost always nets a – sometimes uncomfortable-‘Aha”:) pointing out simple words that can stump out of context: stool, treat, static, void… the opportunity for confounding jargon seems a a given in EMRs. Who better than patients to bring this focus.
    Glad you’re blogging, Pat!
    Kathy

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