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.