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Patients and caregivers in health research

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"Patient-oriented research refers to a continuum of research that engages patients as partners, focuses on patient-identified priorities and improves patient outcomes."

The Strategy for Patient-Oriented Research (SPOR) is an initiative funded by the Canadian Institutes of Health Research (CIHR) that is putting patients and family caregivers at the centre of health research. SPOR brings together federal, provincial and territorial partners to ensure that the right patient receives the right treatment at the right time.

In 2013 we began a novel five-year demonstration project designed to understand how patients can be engaged in health research. Our project is funded by the Ontario SPOR Support Unit (OSSU), and we expect this work to continue past the end of SPOR.

Stream One: Patient and caregiver partners in research

In this stream we are moving beyond doing research on patients to being engaged as partners on those research teams. Patient Advisors are experiencing firsthand what makes the partnership work well and produce research that can improve patient care.

Impact

  • We will develop a Partnership Program with a proven set of processes, tools and training to support future patient-researcher partnerships
  • Through mentorship, workshops and continual feedback, we will foster a network of informed and active patients for future health research partnerships
  • We are gathering and distilling our experiences and observations into learnings for the benefit of future research programs

Stream Two: Patient and caregiver experience driving research and measurement

In this stream we will identify how patient experience can drive research and measurement to ensure that the future of health research reflects patient priorities. To identify those priorities we will apply our Key Performance Targets (KPTs) framework, by which we examine our health experiences for themes and trends that suggest concrete areas for improvement.

Using KPTs to impact research

In partnership with Dr. Samuel Vaillancourt and others at St. Michael’s Hospital in Toronto and the Montfort Hospital in Ottawa, patients will participate in quality measurement and improvement in the emergency department (ED). Specifically, we will examine how our KPT framework can help develop Patient-Reported Outcome Measures (PROMs) for the ED.

Additionally, we will create a national patient survey informed by our KPTs to see if those measures are felt nationally.

Impact

  • We will have a mature and replicable KPT framework that can be included in future health research projects
  • Future research projects will be targeted to patient priorities
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