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Key concepts
What do we mean by “patients”?
Patient is a broad term that includes individuals with lived experience and their informal caregivers, like family and friends. We recognize the limitations of this word, which can sometimes imply waiting, and continue to use it while staying open to finding a more fitting word that truly honors the unique and profound insights that lived experience of illness can bring.
What is Patient-oriented research (POR)?
According to CIHR, patient-oriented research refers to a continuum of research that engages patients as partners, focuses on patient-identified priorities and improves patient outcomes and assigns appropriate evidence value to lived-experience. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve healthcare systems and practices.
What is CIHR’s Strategy for Patient-Oriented Research (SPOR)?
The Strategy for Patient-Oriented Research (or SPOR), built upon the SPOR Capacity Development Framework and the Patient Engagement Framework, is about providing the evidence needed to inform the development of health policies and improve the health care system. It is about moving scientific discoveries to the bedside and producing the information that decision makers and health care providers need to improve care.
In other words, SPOR focuses on moving what health researchers know into what health care providers do.
What is patient engagement and its guiding principles?
Patient engagement refers to the meaningful and active collaboration of patients in governance, priority setting, conducting research and knowledge translation. In order to attenuate the power imbalances and barriers in place within the research community, it is incumbent on researchers, institutions and policymakers to actively promote safe spaces for patients to share their knowledge – i.e. working together to find value in patient knowledge and being vigilant to avoid unfair judgment. Depending on the context, patient-oriented research may also engage people who bring the collective voice of specific, affected communities. Patient engagement also means fostering a climate in which researchers, health care providers, decision makers and policymakers understand the value of patient involvement and patients see the value of these interactions.
Patient engagement in research will improve the relevance of the research and improve its translation into policy and practice, contribute to more effective health services and products, and ultimately, improve the quality of life of Canadians and result in a strengthened Canadian health care system. Underpinning this concept are the following guiding principles:
INCLUSIVENESS
Patient engagement in research integrates a diversity of patient perspectives and research is reflective of their contributions – i.e., patients are bringing their lived experience and expertise into this.
SUPPORT
Adequate support and flexibility are provided to patient participants to ensure that they can contribute fully to discussions and decisions. This implies actively and expressly creating safe environments that promote honest interactions, cultural safety, capacity development, and education. Support also implies fair compensation for their involvement.
MUTUAL RESPECT
Researchers, practitioners, knowledge users, and patients acknowledge and value each other’s expertise and experiential knowledge.
CO-BUILD
Patients, researchers, knowledge users, and practitioners work together from the beginning to identify problems and gaps, set priorities for research and work together to produce and implement solutions.
CAPACITY DEVELOPMENT
What are the guiding principles for capacity development in patient-oriented research?
The following principles are intended to guide the overarching efforts of all SPOR partners in developing capacity for successful patient-oriented research, which are expected to happen at an individual level as well as organizational level.
- Ensuring capacity for meaningful patient engagement:
Ensure that patients and communities have the capacity to be engaged in all stages of research, and that researchers and health professionals recognize the value of patient inclusion in research and have the capacity to effectively collaborate with patients.
- Mobilizing existing expertise:
Build capacity for patient-oriented research by tapping into the diverse skill sets already in existence and leveraging them to be able to participate fully in patient-oriented research. This could include opportunities for capacity development, collaboration, and mentorship across all domains within health research.
- Creating supportive environments for career development:
Build capacity in areas of identified need by raising the profile of those career opportunities that are particularly conducive to patient-oriented research and creating supportive environments that include training and mentorship opportunities.
- Supporting a collaborative and interdisciplinary approach to patient-oriented research:
Support a collaborative, interdisciplinary approach to patient-oriented research by fostering integration, respect and mentorship among patients, researchers, health practitioners, administrators, and policymakers.
- Building capacity to apply research to real world problems:
Enhance capacity to translate the knowledge gained through research and collaboration into practice, and to generate evidence informed by practice. Partners can then better identify the right problems, propose solutions relevant to patients and real-world situations and implement, adapt and scale up effective solutions.