Patients’ Association of Canada Aims for Change “at the Interface” of Patients and Healthcare.

January 10, 2011

By Kate Johnson

The Patients’ Association of Canada is gearing up for its official launch next month and I’ll be watching with interest to see what kind of spin they put on their message. Without a doubt, a group that aims to add the patient voice to healthcare policy debate is filling a gaping void. The question is whether PAC’s voice will simply join the throng or whether it will trigger change.

At the helm of the group is Sholom Glouberman, Ph.D., a soft-spoken, articulate health-policy philosopher with an impressive array of positions at McGill University, the University of Toronto and the Baycrest Center for Geriatric Care in Toronto. He told me the group aims to present the patient’s perspective to Canada’s health policy decision-makers.

“The patient perspective is interestingly, and sometimes quite significantly different from the perspective of others,” he explained, giving the example of government-funded physiotherapy in Ontario.

Under current policy, physiotherapists must be able to document physical improvement in their patients or else drop them from the publicly-funded program. Yet, for many patients at Dr. Glouberman’s geriatric center, physical improvement is not the sole outcome they are looking for.

“For a large number of these patients physiotherapy is their hold on the possibility of change,” he said. “Going to the physiotherapist itself is useful even though they’re not becoming more limber. And the physiotherapist very often has little sense of that.” If this patient perspective had been considered it might have helped shape a different policy that could have allowed patients to continue with some form of therapy despite lack of physical improvement, he said.

Strategic positioning will be very important for PAC in the healthcare discussion. Patients are sometimes pitted against doctors over certain issues, but Dr. Glouberman doesn’t regard the group’s role in that light. “To a certain extent the best allies of physicians would be patients, if patients had a stronger voice,” he said. “Our closest partner has so far been the Ontario Medical Association, so we’re working with doctors –  and bringing the patient into the mix is, I think, going to protect doctors. We’re not talking about arguing merely for the patient, we’re talking about arguing for a better healthcare system – just like everybody else,” he pointed out.

But within this delicate balance, perhaps one of the biggest challenges for PAC will be to seize the opportunity to push change rather than simply comment on the status quo. This may require treading very carefully to preserve what might initially be a rather fragile alliance with healthcare workers. An example reported by CTV and featured on the group’s website is the issue of surgeon fatigue. The debate was sparked by a commentary in last month’s New England Journal of Medicine (N Engl J Med 2010; 363:2577 – 2579) in which Michael Nurok, MD, an anesthesiologist and intensive care doctor at Hospital for Special Surgery in New York City questioned whether surgeons scheduled for elective procedures should inform patients when they are working under conditions of sleep deprivation.

In addition to recommending institutional policies to facilitate rescheduling surgeries in such circumstances, the authors also suggest that “patients should be empowered to inquire about the amount of sleep their clinicians have had the night before such procedures.” If I were a surgeon I’d be offended by such a question. It goes without saying that I wouldn’t  show up for a procedure if I thought I was impaired.  If I was a patient I wouldn’t want to risk offending my surgeon with such a question right before going under the knife.

This seems like the perfect entry point for a patient advocacy group like PAC to take a collaborative position rather than an adversarial one – and not simply to state the obvious about an undesirable situation but rather to push for practical solutions. Rather than taking a stand against sleep-deprived surgeons the group could align itself with them – pushing for their protection against the pressure to perform under such conditions and advocating for flexibility to allow for surgery rescheduling.

I welcome the prospect of a fresh perspective in the healthcare arena and I’ve got my fingers crossed that PAC can mix some smart strategy with its thought-provoking philosophy. Hopefully that will add momentum to the healthcare discussion and make my job more interesting!

One thought on “Patients’ Association of Canada Aims for Change “at the Interface” of Patients and Healthcare.

  1. I hope that I didn’t say “The physiotherapist has little sense of” the fact that patients really appreciate the interventions even if they have little or no physical benefit. If I did I must have misspoken. The physiotherapists are well aware that patients appreciate their care and it gives them hope and the sense that they are doing something about their disability. But the physios are bound to measurable outcomes and if nothing happens, as things stand, they must discontinue treatment, however much the patient ewants it. And so they find themselves caught in a dilemma. I believe that we can sort it out but at least we should recognize the problem at a policy level.

    Sholom Gloubermab

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