The author of this post, Marie Ennis-O’Connor, is a respected patient advocate, speaker, blogger, PR consultant and health activist from Ireland. This was originally published on her site, ‘Health Care Social Media Monitor‘, one of Healthline’s Top Health Blogs for 2012.
It has been fascinating to watch a discussion take place on social media centering on the pertinent issue of whether patient engagement is a concept which is truly being embraced or is mere tokenism.
The debate started with the announcement of a Canadian Patient Experience Summit:
Connect with other healthcare leaders at the NATIONAL FORUM ON PATIENT EXPERIENCE and help shape the future of patient centred care in Canada.
This unprecedented event provides the perfect platform for exchanging ideas and sharing solutions. The conference is dedicated to addressing the central issues and successful strategies for implementing patient centred care.
However, one vital ingredient from the conference appears to be missing:
The Patient!
Colleen Young asks the obvious question of the organizers: ” Do you know about the patient motto “nothing for us without us”. More and more health conferences (med2.0, medX, Doctors2.0) are including patients by setting up special funds…
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The Ethical Nag 
Thanks for sharing – however all the credit goes to you and the others who have highlighted the case and shone a bright light on the pertinent issue of patient engagment tokenism. I have forwarded the discussion not just to patient advocates in my network, but also to my pharma and healthcare public relations contacts who really need to sit up and take notice of what patients really think!
I am fascinated to see how this will play out.
Hello Marie – as I commented on your post, I’m not sure how I feel about how this will play out. I’m guessing that including the patient voice is such an important step forward that we may have to hold our noses and just be grateful to be included – even when we know industry is only doing it because it makes them look good.
One area of focus in the US (at least in the public sector of healthcare) is shared, informed decision making. Several elements are involved and intuitive:
(1) the provider must be informed…with unbiased information.
(2) the patient must be informed.
(3) both must be willing to participate.
(4) external, non-patient factors have to be minimized.
Some of those external factors do include industry and profit motive. One area I’d like to share is that I see regulatory compliance becoming an uninvited participant in patient-provider encounters.
Example: if a provider is being graded on whether patients get flu shots, there is an incentive for the provider to coerce a patient into getting a flu shot. One can think of this as the Healthcare Agenda…which may or may not align with the patient’s agenda! Metrics of healthcare “quality” (and I put that in quotes because “quality” has different meanings to patients, providers, employers, and third-party payers) often help to improve care.
But they also can create conflict between providers and patients. One could propose getting rid of metrics: but I think that is unrealistic. Perhaps we could find BETTER metrics… a way to truly measure whether patient values and preferences are being honored.
Most of the current metrics are derived from the electronic health record and, as such, tend to be very simplistic (did patient have flu shot, mammogram, etc. or not). We are trying to measure if there is documentation of a patient’s goal in the record. Admittedly, this is a crude and easily “gamed” metric. But perhaps it is a reasonable surrogate for truly shared decisions.
Ultimately, I think, the answer to good encounters is to have providers with a listening ear and open mind. It is hard to legislate that.
Thanks so much Mark for your thoughtful response. “…the answer to good encounters is to have providers with a listening ear and open mind” – ain’t that the truth?