A patient or E patient?

ImageThose of us who live on Twitter and work in that space called the patient engagement world are very familiar with Dr. Larry Chu.

A Stanford University anesthesiologist, Larry is better known to many as the executive director of Stanford Medicine X (@stanfordmed), not only a cutting-edge conference on the use of emerging technologies (including social media) in health care but also a conference that actually sets aside 10% of delegate places of patients. For e-patients worldwide it is clear that Larry gets it and lives the ideal of “nothing about us, without us.”

Inviting Larry to speak to Canada’s premier conference for physician leaders – the Canadian Conference on Physician Leadership – resulted in an interaction that was interesting to say the least.

Co-sponsored by the Canadian Medical Association (CMA) and the Canadian Society of Physician Executives (CSPE), the conference attracted an overflow crowd of about 430 Canadian doctors in leadership positions or who aspire to lead.

As the second keynote speaker on the morning plenary session, Larry had to follow a very dynamic presentation by  Linda Duxbury, a business professor who had the audience in stitches with her assessment of Baby Boomers, Gen X and Gen Y and what they want out of life.

Larry was facing an uphill battle from the start.

On questioning the audience he found only a handful of people admitted using Twitter on a regular basis (despite which, #ccpl13 has a thriving meeting stream). And what many in our perhaps insular social media/patient engagement world would find almost unthinkable was that only 5-10 delegates, in that standing-room only audience of Canada’s possibly most thoughtful physicians, had heard about e-patients.

So, the world of @AfternoonNapper, @HeartSisters and @mindthecompany et al is a complete mystery to most of these doctors who are making important decisions about the future of the health care system in Canada.

The responses did not faze, Larry who proceeded to give an eloquent and entertaining presentation on why patient engagement matters and why doctors and patients have to work together to better the system.

What the lack of knowledge about the e-patient community demonstrates to me is a caution to those of us communicating about patient engagement on an ongoing basis that not everybody has the same heightened level of awareness about these issue as we may do.

The delegates at CCPL are by no means ignorant or uncaring about patients – I know these physicians are hugely committed to the betterment of health care and the wellbeing of patients.

What is not on their radar is true patient engagement and bringing patients fully into the decision-making processes for the health care system. And what Larry did was clearly and articulately explain why this matters and how it can work in a new technological environment.

I am convinced, Larry’s trip to Canada was not in vain and I am convinced he has made a few important people ponder about things upon which they had not previously thought.

 

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4 thoughts on “A patient or E patient?

  1. I’d like to thank you for mentioning @HeartSisters among your Twitter list of e-Patients whose worlds remain such a mystery to your CCPL physicians. But first, my requisite conflict of interest disclosure: I love Larry Chu!!

    When I first met him while attending Medicine X last fall as an e-Patient Scholar myself, I was struck – as virtually all of us patient scholarship winners were – by his humility, kindness, humour and genuine sense of caring. He completely “gets” what it’s like to be a patient in a remarkably unique fashion.

    As he likely reminded your audience, too, his goal for true patient participation is to have patients in the audience, on the stage and at the microphones of health conferences like this. E-patients at MedX were not just invited and included, however.

    Here are just two small examples: under Larry’s direction, we patients were assigned our own private “VIP Dining Room” so we wouldn’t have to stand in line with hundreds of the non-patient attendees. (In my own public relations background, VIP means only one thing: corporate sponsors!) Plus he and his team arranged for a special quiet room on site exclusively for e-Patient scholars to use for taking short nap breaks between speakers. For many of us living with chronic illness, this meant the difference between being physically able to make it through each full conference day – and needing to go back to the hotel early in an exhausted heap each afternoon. What a gift each of these thoughtful provisions were to patients!

    But the big lesson I learned about Larry Chu was what happened several weeks after returning home to Victoria. I’d experienced some administrative confusion about MedX scholarship reimbursements – but the minute Larry learned of the mix-up, he immediately jumped in to make it right. Within one day (and a flurry of calls and emails to relevant departments on campus!) he had gone above and beyond any expectations in order to calmly straighten out the whole mess once and for all.

    I predict that one fine day we’ll look back on all other medical conferences and marvel at how patients never used to be included in the events as pioneers like Dr. Larry Chu and his amazing team did so well at Stanford.

    (By the way, a slight correction: MedX can be found on Twitter as @StanfordMedX).
    Regards,
    C.

  2. To me an epatient is someone who is using their EHR to manage their health. It’s not a person who uses Twitter to talk about healthcare issues. To date there almost no epatients in Canada thanks to the oversight and direction of Infoway who together with a few select corporate and government stakeholders, decided to use taxpayer’s ehealth dollars to build client accessible eportals *solely* to serve complex high need patients instead of ‘healthy people’ who form the majority. I hope Dr. Chu empasized that any physician who is using electronic health records should also offer a client GUI and client (Patient) access to same by this point!

  3. Thank you for this dispatch from the North! In case it’s useful, here’s a site dedicated to e-patients (a term coined by Tom Ferguson, MD, to have many “e” words associated with it — engaged, empowered, and yes, electronic):

    http://e-patients.net/

    Your post reflects my own experience — a divide in health and health care between people who are aware of the e-patient movement (even if they call it something else) and those who are not. I try to attend a mix of meetings — the “in-group” meetings like Medicine X and Health 2.0, for example, in order to soak in new insights from experts in participatory medicine (on all sides, patients, caregivers, clinicians, policy makers…) and “out-group” meetings like the annual convention for the American College of Surgeons, in order to bring them the news and better understand their points of view. I find that both sides appreciate the Pew Research Center’s data — one because it is affirmation of their existence, the other because it is revelatory proof of something they suspected was happening.

  4. Hi Pat, Great blog! I guess a lot of social media users in health care will recognize your experience very much. We have seen this many times, when doctors and other providers respond with ignorance, doubt and irresolution on promotion of the new world’s channels of communication and interaction.
    Wouldn’t it be better and for the ignorant more easily to apprehend when we do introduce them in the course of the very process of innovating care? Then they would have the advantage of seeing first what the objectives and reasons to use social media in care are, and so apprehend them as instruments ratten than ends in themselves?

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