Patient-Oriented Research

Patient-oriented research engages patients, their caregivers, and families as partners in the research process to help ensure that studies focus on patient-identified priorities, ultimately leading to better patient outcomes.  At PHA Canada, we want to help transform the role of the patient from passive recipient of services to a proactive partner who helps shape health research and, as a result, health care.   

Patient-oriented research (POR) is a way of doing research that begins by recognizing that patients have valuable lived experiences of their health condition(s) and the health care system and that patients are the central focus of research efforts.
Patient-oriented research values patients' knowledge and engages patients as partners, connecting them with healthcare providers, decision-makers, and others to conduct research that is relevant to patients and can be applied to improve healthcare.

Who is the patient in patient oriented research?
The word ‘patient’ is used broadly and includes any person with experience of a health condition or receiving health care, including informal caregivers such as family and friends.
In patient-oriented research, patients are not participants in a research study. Patients are partners. They actively collaborate with multidisciplinary teams to do research, for example setting research priorities, defining a research question and designing a study, collecting and interpreting data, or sharing research results through publications or other means.

What are patient-reported outcomes (PRO)?
In the United States, the Federal Drug Agency defined patient-reported outcome (PRO) as “any report of the status of a patient's health condition that comes directly from the patient without interpretation of the patient's response by a clinician or anyone else.”  Patient-reported outcomes are one of several different kinds of outcome measurements used in research, such as clinical trials.

PROs provide patients’ perspectives regarding treatment benefit and harm, directly measure treatment benefit and harm beyond survival, major clinical events and biomarker results from blood and tissue testing, and are often the outcomes of most importance to patients and families.

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Patient-reported outcomes provide crucial information for patients and clinicians facing choices in health care.

What are patient-reported outcome measures (PROMs)?
Patient-reported outcome measures (PROMs) are instruments such as self-report questionnaires that are used to measure the patient-reported outcomes.  Although investigators may include outcomes reported through observations from caregivers, health professionals, or parents and guardians, these are clinician-reported or observer-reported outcomes, not patient-reported outcomes.

Why are patient-reported outcomes important?

Patient-reported outcomes are essential when you cannot easily see outcomes that are important to patients or that are rare. They provide the only reasonable way for measuring the treatment impact of many conditions including pain, fatigue, disorders such as irritable bowel syndrome, sexual dysfunction, emotional function, and adverse effects such as nausea and anxiety for which physiological measurements are limited or unavailable.

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Sessions from the National PH Community Conference

• Patient-Centred Care and Quality of Life - Jason Weatherald, MD, MSc, FRCPC, University of Calgary (2021)

• Key Role of PH Patients in Guiding Research - Dr. Provencher 

Reports and Articles

• Report: Early and Often: Reimagining patient community engagement to improve clinical trials feasibility

• Onboarding guide for Patient Partners new to a Patient-Oriented Research Team

• Ensuring the Ethical Conduct of Patient-Oriented Research: A Guide for Researchers

• Culturally Safe Engagement: What Matters to Indigenous (First Nations, Métis and Inuit) Patient Partners Companion Guide

Webinars

• Patients Redefining the Future of Healthcare in Canada 

• Patients as Partners & Shared Decision Making: A New Paradigm in PH Care (Afph webinar)

Connections Articles

• My Experience Participating in a Human Stem Cell Trial, Jo-Anne Mainwood (Connections, Fall 2018, Page 12)

• Why Should PH Clinicians Care about Patient Quality of Life (Summer 2021 Connections, page 27)

• How Community Building Supports Effective Patient-Oriented Research – Connections, Summer/Fall 2023, Page 28

• Patients as Partners: Investing in a New Era of Patient-Oriented Research – Connections, Winter/Spring 2023, Page 28

SPOR SUPPORT Units

The Canadian Institutes of Health Research (CIHR) is Canada's federal funding agency for health research. CIHR wants to help transform the role of patient from a passive receptor of services to a proactive partner who helps shape health research and, as a result, health care.
 
To help make patient-oriented research a reality in Canada, CIHR formed funding partnerships with provinces and territories, philanthropic organizations, academic institutions, and health charities to create Canada's Strategy for Patient-Oriented Research (SPOR).
 
SPOR Support for People and Patient Oriented Research and Trials (SUPPORT) Units provide specialized services throughout their regions to researchers, patients, clinicians, policy makers and SPOR-funded entities to conduct patient-oriented research. 
 
By providing decision-makers and health care providers with the ways and means to connect research to patient-identified priorities, evidence-based solutions can be applied to health care—and then shared throughout the country.
 
Learn more about the Strategy for Patient-Oriented Research