Jan Hux, the president and CEO of Diabetes Canada calls for governments to place greater importance on partnerships with patient groups for the making of big decisions in healthcare. 


The establishment of a multi-stakeholder group, including patient organizations and patient representatives, could provide feedback and public policy recommendations to government on improving the affordability, availability and appropriate use of medications in Canada.


One of the most impactful moments of my medical education happened in, of all places, the Dean’s Boardroom. I was a student representative to the Undergraduate Medical Curriculum Committee and we were discussing an issue that was having a major effect on trainees. I recall being heartened when one of the senior academics at the table suggested it was critical that we consider the views of the consumers of medical education – at least I was heartened until I realized he meant patients! It was an important paradigm shift for me, yet 30 years later, far too often I see resource decisions as a two-way battle between health-care providers brandishing evidence of an intervention’s benefit and administrators/policy-makers who are jealously guarding the public dollar. How can the voice of the consumer be engaged in those decisions?

Recognized as increasingly more valuable and pertinent to health-care planning and outcomes, patient engagement is a practice that improves the quality and delivery of healthcare services. A much-needed shift toward patient engagement in decision-making at the bedside or in the clinic has been underway for several decades but greater efforts are needed to ensure that patients are also engaged at the levels of program and service design and, beyond that, at the level of policy, strategy and governance. Health charities such as Diabetes Canada strive to represent the collective voice of Canadians living with and affected by disease. And a critical component to this effort is ensuring we seek input from those we serve, collaborate with partner health organizations, and share collective knowledge and expertise with governments.


One might question the need for patient input in an era of evidence-based medicine – don’t the outcomes of randomized clinical trials of treatments provide an unbiased measure of the benefits patients would receive from therapy? Yet the outcomes measured in those trials may not be those most important to patients e.g. average blood sugar levels vs quality of life, and aggregate outcomes, by definition, obscure individual variation in needs, preferences and outcomes.


Along with clinical evidence reviews, individual preferences and the context of lived experience should guide decision-making when it comes to evolving technologies and new medicines with proven efficacy. Diabetes medications, devices and supplies are important for people with diabetes to effectively self-manage their disease. These supports are also evolving at a rapid pace, making it a challenge for governments to respond in timely fashion. This is evident in access to new medications in Canada where the process for reviewing, approving and providing public coverage for prescription medications is complex, lengthy and can delay access to necessary time-sensitive care.


Diabetes Canada believes the Canadian government has a duty to develop an effective regulatory system for medications, supporting the best outcomes for citizens without creating additional barriers to access and this should be done in full partnership with patients. Unfortunately, the proposed amendments to Canada’s Patented Medicines Regulations overlooked this critical component by not soliciting or engaging input from patients in a meaningful manner. As noted in our submission and feedback to the Patented Medicines Prices Review Board, people living with diabetes must have an opportunity to have their say when it comes to a set of regulatory changes that will impact their ability to manage their disease. At Diabetes Canada, we are deeply aware that our constituents, and other Canadians who live with illness, have the most to win, or lose, through drug policy reform. The establishment of a multi-stakeholder group, including patient organizations and patient representatives, could provide feedback and public policy recommendations to government on improving the affordability, availability and appropriate use of medications in Canada.


While few would oppose the principle of patient engagement, many argue that implementation isn’t practical at the policy level because patients don’t have the expertise to assess research data. However, the Canadian Institutes of Health Research faced similar challenges in launching its Strategy for Patient-Oriented Research (SPOR). To support their commitment to ensuring patient expertise and priorities were incorporated in research funding, design and operations, they developed and implemented high-quality training modules to give patients the skill and confidence in engaging at the research table. This inclusive program has succeeded in involving patients at every stage of research so that it can be fully responsive to their needs.


In the wake of growing health-care costs and chronic disease prevalence, it may be challenging for governments to be nimble and responsive to the current pace of research and discovery while balancing the expectations of those accessing health-care services. It is essential that patient groups and health-care stakeholders work together to remove barriers and encourage governments to explore ways to strengthen the patient voice in all activities to promote better health outcomes.