Patient engagement and trench innovation

Over the past couple of years I have become engrossed in a relatively new kid on the health block: Patient Engagement.

With Patient Engagement, the hope is that patients — long seen as merely passive receivers of care — may actually have something to OFFER the health care system beyond being a human pin-cushion and consenting to any treatment thrust their way.

And this is as it should be.

Dr. Michael Rachlis in a well-written piece in the Toronto Star entitled “The Health Care Sky is Not Falling!” suggests, among other important observations, that “Most of health care’s problems — from long wait times to inadequate follow-up of chronic illness — are due to antiquated, provider-focused processes of care. The remedy — a high-performing, patient-friendly system.” But simply stating this is clearly not enough and begs the question: If the system should be “a high-performing, patient-friendly system,” should patients not be an integral part of the solution?

Or, is it possible that the substantive inclusion of patients at all levels of the health and health care system may just prove to be the elusive missing piece in health reform?
In another item in the Globe and Mail, “Canada, like Steve Jobs, should zero in on innovation”, by Roger Martin, Dean of the University of Toronto’s Rotman School of Management, makes two sublime points.

The first is that the success and impact of Apple is more about “innovation” than about “invention.” The difference being that invention starts with the inventor while innovation starts with the user. And Steve Jobs had a renowned fanatical devotion to understanding the user, creating products that the normal invention process would never envision.

To draw this into the health care context the “user,” then, is the patient. While the “inventor” would be analogous to providers and policy makers. As such it is no surprise that it is so hard to innovate, rather than invent, in Canada’s health care system.

The second point is that successful innovation means trying things that are unproven. Yet, that is exactly how we got Medicare in Canada in the first place. Speaking years ago with one of the authors of the Emmett Hall Royal Commission report, I was struck by how much of the final decision to create Medicare was simply a leap-in-the-dark. So, Canada – until recently – has a strong track record in public health care innovation. Perhaps it is time to dust-off that reputation.

If we truly want to innovate in our health care system then we MUST take a page from Steve Jobs and develop a fanatical devotion to understanding the patient. But it should go well beyond that. Many patients are not willing to be part of a patina of involvement, but want a truly substantive role.

Be that involvement in health systems design, research, governance or management we must help current leadership – in all its forms – to accept that patients are an untapped resource that we ignore at our peril. Governments must make real effort to find a way for the experiences of the patient to have as much credence as that of care-givers and policy analysts.

Chronically ill people have direct, personal, and often daily experience with the health care system. I have yet to talk with one that did not have a few horror stories and a few suggestions for improving the system. In World War I ignoring the voice of the troops in the trench led to many bad decisions. Let’s not do the same by ignoring the trenches in health care.

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1 Comment
  • Sharon Wilton, Project Share says:

    William …

    How often have you heard that ” life is tough in the trenches”… actually….too tough to be considering options:(

    Frontline staff and people ( “person” is the Health link term) have had all they can take of the Hallmark message ” we care enough to”…

    Step one…
    admit that the top has circled the wagons and has lost sight of what “caring” really means.

    stop shuffling the parts ( like moving the stretchers in E.R farther down the halls of oblivion) as if all the “patient person” needs to see is momentum ( versus progress).

    It was the LaLonde report where he said ” innovation can come from anywhere inside the system”
    …and that begs the question ” who is looking for it in an organized way?”

    I have a suspicion that the costly top heavy providers just need another banner to flash on the screen where the process of “good, better, best.”practices… has now been reversed to where we can only expect “good” ( Civil Society).

    We are at the point where the payor will believe nothing that is “said”… and will pay only for what is “done”…2015 here we come!

    Want innovation?

    Look for the apomediators who stand in the overlapping circles of care categories and service options and be humble enough to understand:
    • it takes decades to develop innovation that works;
    • to fund it before it can be known or even accepted for funding;
    • to package it before the purchaser exists;
    • to disseminate it as ” ready to go” when the clock reads 11:59 p.m.

    You will not find the innovator as the patient.
    You will find the innovator refuses to take the risk of being a patient .

    As long as people consider the innovation alert is declared as ” eureka” on their way to the “trough” ( not the trenches)…. they will miss discovering the hard work that leads to an epiphany :(


William Swan


William Swan is the Deputy CEO of the International Health Economics Association. He blogs at Life with Asthma.

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