There is an important shift in the way that health research is being conducted, whereby “patients” are involved as much and as meaningfully as possible. This is being done under different initiative names: SPOR in Canada; PCORI in the US; and INVOLVE in the UK. All have the similar focus of engaging patients in authentic ways in research.
What is Patient-Oriented Research
Canada’s Strategy for Patient-Oriented Research (SPOR) endorses the active partnership of patients, researchers, health professionals and decision-makers in research so as to build a sustainable and accessible health care system that optimizes the health of Canadian citizens. In other words, this research approach is intended to promote a better health system and better health outcomes.
SPOR's slogan “Putting patients first” implies that the priorities of patients are most important and should be used to set the research agenda.
SPOR's goal aligns with Canada's Triple Aim Framework: better health, better health care, better value.
Research is being conducted ‘with’ or ‘by’ patients and other relevant stakeholders, rather than ‘for’ them.
What is the added value of patient-oriented research?
We recognize that patients and families are experts on their health experiences and needs; they provide unique expertise on their everyday experiences living with the condition, and can share their experiences with the health care system. Patients can influence the design of the study, the outcome measures used and the interpretation and use of the findings, leading to better results with higher impact. Some examples of how a research study can improve with patient involvement:
- Ensuring the research question is relevant to patients, with respect to their current health care needs
- Helping develop consent forms, questionnaires and other materials in a way that makes them easier to understand, makes sense to patients and parents, and is considerate of their needs
- Helping design the intervention in a way that is feasible and acceptable to patients and to health care providers, and therefore easier to apply in the real world
- Ensuring the outcomes of greatest importance to patients are the ones measured
- Helping to recruit participants, including people from seldom-heard groups.
- Participating in data collection or analysis (e.g. conducting interviews, qualitative analysis of themes that emerge), which may enhance the quality of the data
- Assisting with the interpretation of the findings to ensure that the results are meaningfully related to their lived experiences.