I breathe a sigh of relief as the announcement system comes on after an 8-minute clinical encounter: “please begin patient feedback.”
I especially enjoy this part of our weekly clinical skills session, and not only because it heralds the end of an encounter wherein I, as a medical student, nervously attempt to recall the many questions relevant to a clinical scenario. These feedback sessions, even though coming from standardized patients who are trained actors, help me appreciate the patient perspective. Of course, every health care provider has been a patient at some point (and will be again), but as we further our training, we become progressively more immersed in the language and culture of medicine. So it is valuable to be reminded by a patient when I inadvertently use jargon that is hard to understand, or to be alerted where I could have explained the risks of a procedure more succinctly.
Of course, much like the diversity of opinions in real life, the actors who work as standardized patients provide divergent and sometimes conflicting feedback. While confusing at times, this too is useful, because we need to know how to react when an approach that works with one individual isn’t well-received by another.
Today, patient voices play an increasingly significant role in steering the course of our health care, from education to policy. Let me give a few examples: the Meeting of Experts program at the University of British Columbia actively involves patients and community members in the health care trainees’ learning, while at Kingston General Hospital, the Patient and Family Advisory Council and Patient Experience Advisors have been recognized for their instrumental role in hospital decision-making processes. On medical innovation, both the Strategy for Patient-Oriented Research as well as the Patient-Centred Outcomes and Research Institute reflect recent commitment to patient-oriented goals, while in the realm of pharmaceutical policy, the Ontario Public Drug Programs has two patient representatives on its Committee to Evaluate Drugs and accepts submissions from specific patient advocacy groups.
But is “the patient perspective” in our policy deliberations representative of the patient population as a whole? Do they capture the diversity of opinions that I experience in my clinical encounters? Perhaps there is an uncomfortable truth that we are living under the illusion of a unifying “patient voice”, and that this voice has been primarily skewed towards groups who are highly organized, deeply funded and rigorously promoted. A valid question, then, is whether these groups do in fact represent interests of an average user of our health care system, whose individual experiences may not necessarily make their way to the policy roundtables.
Let’s take groups with positions on drug approval as an example. Drawing on series of market withdrawals of new drugs, two internationally recognized citizen groups Prescrire and Public Citizen actively promote increased pharmacovigilance and caution against approval of novel agents without adequate safety data. On the other hand, the Abigail Alliance based in the United States has taken the opposite stance, seeking legal amendments to provide Phase 1 investigational drugs to patients outside the context of clinical trials. While the position of this latter group may seem radical, its not that different from the uproar in 2008 from patient groups for access to the Zamboni procedure as a treatment of multiple sclerosis, despite uncertainty in the medical community of its efficacy. It is sometimes felt by patient groups in areas where therapeutic development has been lagging, for example, in Alzheimer’s Disease that drug coverage approval ought to be made despite ongoing debate of whether the therapy provides any meaningful benefit to the patient. All in all, it would be simplistic to attempt to reconcile the myriad of opinions from these groups into a single “patient perspective”.
Many patient groups also receive significant funding from the pharmaceutical industry: Glaxo Smith Kline lists its support for 58 patient groups in Canada in 2012, while Pfizer Canada provides funding to over 1000 non-profit organizations each year, many of which patient organizations. In general, 30-60% of patient groups report funding from drug companies. Sponsorship of these associations by pharma seems benign, but it alters the public perception of “the patient voice” in two ways: first, such funding has the potential to impact a patient association’s stance of neutrality; more importantly, however, is the issue of equity: given that some patient groups report reliance on donor funding to be insufficient for their operations, it creates an uneven playing field whereby patient groups who refuse pharma funding (or whose goals do not align with those of industry donors) struggle to compete with recipients of industry support. Drug manufacturers, in effect, become a potential source of unfair subsidy for the work of patient groups, which are mostly perceived as providers of unbiased “patient perspective” by the public.
Research in recent years has shown that health care delivery is skewed: bulk of the health care resources is consumed by the very few. Heavy users of health care are also most likely susceptible to the Triple Fail: low-value care that is harmful, costly and results in poor patient satisfaction. But their perspectives, in my mind, have not yet been fully integrated into our decision-making processes. Why? Because the heaviest users of the health care system whose opinions we desperately need are precisely the patients who are too ill or unable to invest the time to sit on a council or travel to a meeting in downtown Toronto.
We have made significant strides in seeking patient input in health care. But patient involvement does not mean selecting a convenient sample of opinions. We need better ways to ensure that patients in the driver’s seat of health care decision-making are represented by their level of encounter in the health care system, free from special interests. We often see patients featured at a bus stop or in the newspaper; but sometimes we forget those who do not have the organization or resources to lend their voices to the forefront of our policy discourse. Let’s remember that patient-centred care is supposed to be equalizing. It’s a call for providers and policy makers alike to lend our ears to the voices in the shadows. More importantly, let’s remember that change in health care, like any change, only moves forward when we entertain the diversity of opinions and not become rooted in the appeal of a single narrative.