Patient-oriented research in Canada: what progress has been made?
The governments of Canada and the United States have patient-oriented research initiatives underway, which share the goals of supporting research that will improve health care systems and directly benefit patients.
However, the mandate, structure and funding of these initiatives differ significantly, with the United States accomplishing a great deal in a relatively short period of time, compared to Canada.
On August 22, 2011, the Honourable federal Minister of Health, Leona Aglukkaq, unveiled Canada’s Strategy for Patient Oriented Research (SPOR) at the annual meeting of the Canadian Medical Association in St. John’s, Newfoundland. The choice of venue, the largest national meeting of Canada’s doctors, underlined the importance of the announcement as the Minister revealed an ambitious new approach which promised to change the practice of medicine, ensuring “that research will have a greater impact on treatments and services provided in clinics, hospitals and doctors’ offices throughout Canada.”
A year after the official announcement about SPOR, it seems appropriate to consider its progress, and compare it with an initiative in the United States, the Patient-Centred Outcomes Research Institute (PCORI) which has a similar mandate and has been under way for roughly the same period of time.
With health care spending in Canada topping $200 billion in 2011, and publicly-funded provincial health care systems dealing with sicker patients and stretched budgets, it is difficult for any provincial government, taxpayer, patient or doctor to disagree with the importance of conducting practical research to determine the best ways to deliver health care so that the needs of patents are met.
The Patient-Centred Outcomes Research Institute in the United States
PCORI was founded in 2010 as part of the Affordable Care Act. The reason for establishing PCORI and SPOR seem to be almost identical. Sean Tunis, President of the Center for Medical Technology Policy says that PCORI’s “was inspired by the view that reliable evidence about which health services work best for which patients is needed to inform clinical decisions and health policy decisions”.
PCORI was legislated as a separate body from government, with a clear budget, mandate and institutional structure. Harlan Krumholz, a Professor of Medicine at Yale University and PCORI board member notes that “there is no direct accountability” of PCORI to the American government, which others have suggested will ensure important flexibility in ensuring scientific independence, and prevent political interference in funding important clinical research.
PCORI receives direct annual support from the United States Treasury, as well as annual fees per individual assessed on Medicare, private health insurance and self-insured plans. Together, these revenue sources are expected to give PCORI an annual budget of about $650 million per year from 2014-2019. Under the current legislation, PCORI will cease to exist after 2019.
PCORI has already had a number of concrete measures of progress. It has recruited an Executive Director and a Board of Governors consisting of individuals described to healthydebate.ca as “the cream of the crop”. It regularly publishes meeting agendas and major documents online. PCORI has identified and publicly released five research priority areas, with funding offered to groups of researchers and organizations pursuing work in these areas. Last month, a group of respected researchers released for consultation a draft set of standards for doing patient-oriented research, which include how to engage patients in various aspects of health research.
How does SPOR compare with PCORI?
Perhaps most importantly, SPOR is a strategic initiative of the Canadian Institutes of Health Research, and is not a separate entity with a guaranteed budget. This means that the Canadian Institutes of Health Research is actively seeking partnerships with provincial governments,the pharmaceutical industry and others to fund SPOR-related research. However, because SPOR lacks a concrete federal government funding commitment over the next few years, informants familiar with the strategy tell us that this makes it difficult to secure matching funding from some of the provinces. Informants also tell us that the pace of progress on determining provincial priorities for SPOR research, and securing funding, varies considerably across the country. This has lead a number of researchers to privately express frustration with what they perceive is an unfocused strategy with slow progress.
However, Jacques Magnan, CEO of Alberta Innovates – Health Solutions and a SPOR steering committee member, says that “in spite of frustrations around how slow this has been going forward” the approach led by CIHR around SPOR “as a partnership between the national [health research] funding organization and provinces is the only way to go.” While the Strategy has highlighted the need for improving provincial health care systems, Magnan says that the “there is no one size fits all solution” when it comes to provincial health care systems, patients and research priorities.
Another apparent difference between PCORI and SPOR is the focus of the two strategies. The mandate of SPOR seems broader than that of PCORI. PCORI’s five priority areas are all clearly linked to the delivery of health care. The most recent documents from SPOR suggest a much broader mandate, including early studies in humans, commercialization, clinical trials, and research on the delivery of health care.
The future of SPOR
It is only one year since Minister Aglukkaq announced the federal government’s commitment to SPOR, so it is perhaps unfair to expect major progress already. However, it is difficult not to be struck by the speed with which PCORI has been established, set priorities, and started to fund research.
Some of the difference in the speed of progress are almost certainly due to a major infusion of new federal dollars in the United States, which to date have been lacking in Canada. One also wonders whether establishing PCORI as an entity separate from government has allowed it to move ahead rapidly. The fact that health care in Canada is delivered provincially, with different regional priorities and funding, can make the development of a national patient-oriented research strategy difficult in Canada.
Many committed, talented and thoughtful individuals are working hard on SPOR – it will be interesting to see if the way SPOR is funded and governed will allow it to achieve its goals.