Realizing the vision of patient-relevant clinical research

I applaud the editors of CMAJ for supporting enhanced patient engagement in research. I wish to clarify one small point. This editorial cites our article for the quotation "easier, healthier patients." These are not our words. This is a direct quotation from a paper entitled "General Practice Services Committee: Improving Primary Care for BC Physicians and Patients," which is cited in our paper and below [1]. The full paragraph is as follows:

"These incentive payments allow GPs on a fee-for-service model to justify spending more time with their chronic and complex care patients, and facilitate the provision of guidelines-informed care. Patients with more complex illnesses are therefore no longer dropped in favour of easier, healthier patients."

The incentive payments were planned by representatives of Doctors of BC and the Ministry of Health. As is observed in the editorial, and as is illustrated in the above quotation, the focus was largely on payments and providers. We attempted to evaluate these policies retrospectively, using routinely collected data, and we freely acknowledge the limitations of the measures used.

I fully agree with the need for enhanced patient engagement in research, and also hope for greater patient involvement in shaping primary care policies. This would support identification and monitoring of patient -relevant outcomes from the start.

Reference

1. Tregillus VHF, Cavers WJ. General Practice Services Committee: Improving primary care for BC physicians and patients. Healthcare Quarterly 2011;14:1-6.

Conflict of Interest:

None declared

Dr. Patrick's call for greater patient-involvement in research and a focus on patient-focused outcomes is timely and critical, and I applaud CMAJ for taking this important position.

As a public health physician, the involvement of key stakeholders in planning, research, and evaluation of policies and programs has long been well understood - even if it faces deployment challenges in practice. Community-based participatory research represents one such model. (1) Ultimately, it is members of our communities that will bear the benefits and burdens of public policy. Thus, understanding potential effects as part of planning and monitoring for outcomes, both intended and unintended, is critical to ensuring that, put simply, we got it right - and if not, what needs to change.

Similarly, the private sector has had similar philosophies in seeking consumer testing and input. Even something as simple as apples is subject to testing. (2) Their business models are highly dependent on not just coming up with a product that looks good in practice, but one that is sought after, with tangible impacts, that a consumer might consider purchasing. Many companies would argue that to ignore the consumer in the development of their value proposition is foolhardy.

To that end, the parallel concept is that patient involvement is essential in planning and conducting healthcare research - be it around assessing treatments, experiences, or systems change - to ensure outcomes are relevant to those who matter - the patients who are accessing care.

Critics will argue that any other number of measures can act as a proxy for improved outcomes, such as cost-savings or decreased wait times. What such measures lack is an understanding of the direct impacts on population and individual level health outcomes. To truly understand what health outcomes impact quality and quantity of life, you have to ask the people who are living with the outcomes of the intervention in question.

Critics will also argue that it's difficult to identify who represents the voice of the patient. That is, however, a specious argument: just because something is difficult, or cannot be perfectly done, does not mean it shouldn't at least be attempted. Again, to take a page from private sector - if a company isn't hearing from the right voices, they'll figure it out quickly when things start to go awry.

Canadian academics and practitioners conduct voluminous amounts of research, and every day there are new programs, policies, and interventions that are also ripe for investigation. As the public health and private sector have learned, and given the higher stakes, the medical community has a responsibility to ensure that any planning and evaluation is informed by the people that live with the outcomes.

1. Wallerstein N, Duran B. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Public Health. 2010 Apr 1;100 Suppl 1:S40-6. doi: 10.2105/AJPH.2009.184036. Epub 2010 Feb 10.

2..Peneau S, Hoehn E, Roth HR, Escher F, Nuessli J. Importance and consumer perception of freshness of apples. Food Quality and Preference Jan-Mar 2006 17(1):9-19 doi:10.1016/j.foodqual.2005.05.002

Conflict of Interest:

None declared