Realizing the vision of patient-relevant clinical research

Kirsten Patrick

doi:10.1503/cmaj.161084

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Re:Is patient involvement an essential component of good clinical research?
Kirsten L. Patrick

Published on: 22 December 2016
Patient engagement in research and policy
M. Ruth Lavergne

Published on: 24 November 2016
A step forward: towards relevant outcomes
Lawrence C. Loh, MD, MPH, CCFP, FRCPC, FACPM

Published on: 18 November 2016
Is patient involvement an essential component of good clinical research?
Maurice McGregor

Published on: 15 November 2016

Published on: (22 December 2016)

Re:Is patient involvement an essential component of good clinical research?
Kirsten L. Patrick, Deputy Editor
Prof. McGregor urges me to resist displaying hubris - which is "excessive pride or self-confidence; arrogance." Perhaps Prof. McGregor misunderstands my motive in writing this editorial. In truth, using the platform I am so privileged to have, I am advocating for our profession to move away from the hubristic notions that physicians - and medical researchers - know best what patients value, without bothering to ask them....
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Prof. McGregor urges me to resist displaying hubris - which is "excessive pride or self-confidence; arrogance." Perhaps Prof. McGregor misunderstands my motive in writing this editorial. In truth, using the platform I am so privileged to have, I am advocating for our profession to move away from the hubristic notions that physicians - and medical researchers - know best what patients value, without bothering to ask them. It is my hope that CMAJ can play its part in supporting evolving best practice in medical research.
Conflict of Interest:
I am the author of the article to which this response is attached.
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Competing Interests: None declared.
Published on: (24 November 2016)

Patient engagement in research and policy
M. Ruth Lavergne, Assistant Professor
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 p...
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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
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Competing Interests: None declared.
Published on: (18 November 2016)

A step forward: towards relevant outcomes
Lawrence C. Loh, MD, MPH, CCFP, FRCPC, FACPM, Associate Medical Officer of Health
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 pa...
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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
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Competing Interests: None declared.
Published on: (15 November 2016)

Is patient involvement an essential component of good clinical research?
Maurice McGregor, Prof Emeritus of Medicine
In a recent editorial (Realizing the vision of patient-relevant clinical research), Kirsten Patrick propounds the view that patient involvement should be an essential component of clinical research. "Patients and their caregivers" she states, "must be involved in decision- making at all steps in the research process, from design to choice of primary and secondary outcomes,.....". As an example of failure to do this she c...
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In a recent editorial (Realizing the vision of patient-relevant clinical research), Kirsten Patrick propounds the view that patient involvement should be an essential component of clinical research. "Patients and their caregivers" she states, "must be involved in decision- making at all steps in the research process, from design to choice of primary and secondary outcomes,.....". As an example of failure to do this she cites a study by Lavergne and colleagues which found that incentive payments to primary care physicians for providing care to patients with multiple chronic conditions did not have a significant impact on patients' primary care contacts, continuity of care or management costs. She criticizes the authors of this paper for the fact that "there is a striking absence of any reference to patients ..." , and for the fact that "the outcomes were almost certainly not patient-relevant ". Surely that is a bit much. Why would this study which was based on administrative data need to refer to patients? In what way would it be improved by doing so? And if the potential saving of millions of dollars to the healthcare system is not "patient-relevant" what is? These pronouncements would not merit comment if they did not come from the Deputy Editor of the Journal who concludes her editorial with the warning that, "As we appraise research that is submitted to the Journal, we will consider carefully methods used to involve public and patient representatives in design and implementation". In other words, if you want to get published in the CMAJ, make sure you list the names of representatives of the public and of patients amongst your authors or at least in your Methods section. (You will have to make up your own mind what a representative of the public is. Must they be elected? What distinguishes you, a regular author, from a representative of the public?). I suggest it is time to urge those who hold the incredible power to accept or reject our research submissions to resist the associated hubris, to leave the authors to decide how the research should be carried out, and to judge the study solely on its quality.
Conflict of Interest:
None declared
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Competing Interests: None declared.