RESEARCH
Patient-Oriented Research
Patient-oriented research is about engaging patients, their caregivers, and families as partners in the research process. This engagement helps to ensure that studies focus on patient-identified priorities, which ultimately leads 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.
What is Patient-Oriented Research?
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 POR?
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” . PROs are one of several different kinds of outcome measurements used in research such as clinical trials.
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 PROs. Although investigators may include outcomes reported thru observations from caregivers, health professionals, or parents and guardians, these are not PROMs but rather clinician-reported or observer-reported outcomes not patient-reported outcomes.
PROs provide crucial information for patients and clinicians facing choices in health care.
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.
Why are PROs important?
PROs are essential when you cannot easily see patient-important outcomes that are rare or unavailable. They provide the only reasonable way for measuring treatment impact of many conditions including pain, fatigue, disorders such as irritable bowel syndrome, sexual dysfunction, and emotional function and adverse effects such as nausea and anxiety for which physiological measurements are limited or unavailable.
What is the PHA Canada Research Capacity Building Project?
In 2022, PHA Canada launched a new multiyear initiative that aims to enhance Canada’s PH research environment and build capacity for patient-oriented research.
The Project will focus on three main priorities:
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Establishment of a Canadian PH Clinical Trials Network
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Expansion of the Canadian PH Registry to include a biobank
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Development of patient education and training initiatives
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Canadian PH Clinical Trials Network
A clinical trial is a research study that evaluates the safety and effects of one or more treatments on actual patients. Unlike clinical trials for more common diseases such as cancer or arthritis, there are unique challenges associated with rare disease clinical trials, partly because patients are fewer and scattered around the globe. As a result, studies for rare disease research must find ways to adapt their designs without compromising the quality of the research.
Patient Registries and Biobanks
A disease registry is a unique database that contains information about people diagnosed with a specific type of disease. Human biobanks collect and supply human tissue, blood specimens, and associated data for research. These approaches have the potential to increase scientific efficiency by maximizing the use of valuable and rare data and samples.
Patient Education and Training
The third pillar of the Research Capacity Building Project includes a broad range of learning opportunities for patients and caregivers, based on a train-the-trainer model. This includes:
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increasing regular communication channels.
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offering research-related workshops via webinars.
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advocacy on behalf of the PH community.
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increasing the PH community’s knowledge and understanding of the value of real-world evidence (data generated in settings outside clinical trials);
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the role of patient-reported outcomes (an outcome reported directly by patient who experienced it).
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This initiative will create a foundation of patient leadership, collaboration and cooperation that ushers in a new era in patient-oriented PH research in Canada. Because the only way to achieve better outcomes for patients, is to include patients every step of the way.