The importance of measuring the impact of patient-oriented research

Diane Aubin; Marilynne Hebert; Dean Eurich

doi:10.1503/cmaj.190237

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Patient-oriented research can be meaningful for clinicians and trialists in addition to patients
Thalia S. Field, Vanessa Dizonno, Sarah S. Park and Michael D. Hill

Posted on: 03 November 2019
RE: The impact of patient-oriented research
Stephen Bruce Beerman

Posted on: 06 August 2019

Posted on: (3 November 2019)
Page navigation anchor for Patient-oriented research can be meaningful for clinicians and trialists in addition to patients
Patient-oriented research can be meaningful for clinicians and trialists in addition to patients
Thalia S. Field, Stroke Neurologist, Associate Professor, Vancouver Stroke Program, University of British Columbia
Other Contributors:
Vanessa Dizonno, Study Manager

Sarah S. Park, Research Assistant

Michael D. Hill, Stroke Neurologist, Professor
We read this analysis, which identified issues in developing and measuring the impact of patient-oriented research (POR), with interest. We are studying cerebral venous thrombosis (CVT), a rare cause of stroke, in a national trial (SECRET – Study of rivaroxaban in CeREbral venous Thrombosis) and parallel registry (TOP-SECRET). By incorporating POR through consultation and patient-related outcome measures, we hope our study will be clinically meaningful to patients and providers, and will provide new knowledge on the natural history of outcomes impactful to survivors.

The standard outcome for stroke trials, the modified Rankin Scale, poorly accounts for “invisible” but life-altering deficits like pain, mood, fatigue, and subtle cognitive issues. As functional outcomes improve, with less death and dependence, accounting for invisible outcomes assumes heightened importance. In CVT, functional outcomes are good in 80-90%, but over 60% have residual “invisible” symptoms. Our trial has a patient engagement core to vet our assessment battery and educational materials. We have also formally consulted CVT survivors and their supporters through surveys and an in-person forum. We successfully collaborated with survivors to identify patient-centered outcomes in CVT, and are employing validated metrics to measure these. This strategy evaluates clinical and patient-centered impact, and may also serve as a pragmatic method to power a clinical trial for this rare disease.

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We read this analysis, which identified issues in developing and measuring the impact of patient-oriented research (POR), with interest. We are studying cerebral venous thrombosis (CVT), a rare cause of stroke, in a national trial (SECRET – Study of rivaroxaban in CeREbral venous Thrombosis) and parallel registry (TOP-SECRET). By incorporating POR through consultation and patient-related outcome measures, we hope our study will be clinically meaningful to patients and providers, and will provide new knowledge on the natural history of outcomes impactful to survivors.

The standard outcome for stroke trials, the modified Rankin Scale, poorly accounts for “invisible” but life-altering deficits like pain, mood, fatigue, and subtle cognitive issues. As functional outcomes improve, with less death and dependence, accounting for invisible outcomes assumes heightened importance. In CVT, functional outcomes are good in 80-90%, but over 60% have residual “invisible” symptoms. Our trial has a patient engagement core to vet our assessment battery and educational materials. We have also formally consulted CVT survivors and their supporters through surveys and an in-person forum. We successfully collaborated with survivors to identify patient-centered outcomes in CVT, and are employing validated metrics to measure these. This strategy evaluates clinical and patient-centered impact, and may also serve as a pragmatic method to power a clinical trial for this rare disease.

We agree that common terminology and frameworks for POR are needed, but clinicians and researchers should not be dissuaded from incorporating patient-oriented outcome measures. Including patient partners in research is pragmatic as their experiences can inform selection of both clinically and personally meaningful endpoints.

Sincerely,
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Competing Interests: Dr. Field is the PI and Dr. Hill is the co-PI of the SECRET trial. Bayer Canada has provided in-kind study medication.
Posted on: (6 August 2019)
Page navigation anchor for RE: The impact of patient-oriented research
RE: The impact of patient-oriented research
Stephen Bruce Beerman, Family Physician, University of British Columbia
Thank you for this review of patient oriented research and the lack of clarify about the determination of impact. My question is the difference between patient-oriented research and community based research?
I have been involved in research that engages a community (geographic or disease identified) in the design, supervision and outcomes. This is an essential component of research with specific populations and may produce permission, engagement and policy/behavior change. I assume that in patient-oriented research the engaged entity is a patient and not a collection of patients? Where is this boundary and is this not mostly community based research?

Competing Interests: None declared.