Patient Engagement Resources
The engagement of patients in health research is a growing practice in Canada. It does not refer to the inclusion of the patient as a research subject or participant, but instead is the act of patients meaningfully and actively collaborating in the governance, priority setting, conduct of research, and knowledge translation of research findings. Patients provide a unique perspective to research due to their lived experience with an illness, condition, or situation.
All patients in Alberta are welcome to sign up for our Patient/Family Registry.
More about patient engagement: why should patients be involved in research?
There are a number of reasons why engaging patients in health research can be beneficial.
- Patients can contribute experiential knowledge, which includes their personal opinions, learned experiences, emotions and feelings, and can portray the impact and meaning of an illness or situation on daily lives.
- Patients have a right to be included in research and decisions that may impact their health and well-being or the health and well-being of future patients.
- As taxpayers and users of the health system, patients have a right to openly debate and influence research that is publicly funded.
- Including patients in research can increase the transparency and accountability of both research organizations and research – which frequently are government-funded.
- Including patients in the process can lead to new ideas or innovations, and provide a more holistic view of health.
- Including patients in the process can lead to research and outcomes that are more relevant to patients.
- Involvement of patients in research may increase the quality, impact, and confidence in the outcomes.
- Patients can assist with dissemination and implementation of the research findings into care.
Why are patients being engaged now?
In August 2011, the Canadian government launched the Strategy for Patient Oriented Research (SPOR) through the Canadian Institutes for Health Research (CIHR). The core of this strategy focuses on ensuring that: research is relevant to patients, that patients are engaged in the research process, and that research findings are quickly integrated into patient care. Canada’s SPOR goals will be achieved through a number of methods, one of which has been the development of provincial centres called SPOR Support for People and Patient-Oriented Research and Trials (SUPPORT) Units. Alberta was the first province in Canada to launch a provincial SPOR SUPPORT Unit in November 2013, and seven province-wide platforms have been established, including this Patient Engagement Platform. The goal of the Patient Engagement Platform is to support the engagement of patients and researchers in one or more phases of the spectrum of health research, through initiatives related to research consultation (including governance), mobilization and matching, assessment/orientation/education, facilitation/mentorship, guidance with patient compensation, and evaluation of patient engagement activities.
The nature and degree of patient engagement in research
The nature and degree of patient engagement in the health research process can vary greatly. The International Association of Public Participation (IAP2) has a widely accepted public participation spectrum that has been adapted to this discussion of patient engagement in health research (see Figure 2). Each level of the spectrum has advantages and disadvantages and, in practice, the level of patient engagement should be determined by the needs of the research process.
- Patient: An overarching term inclusive of individuals with personal experience of a health issue and/or, informal caregivers, including family and friends.
Note: The term “patient” is always italicized when used by the Patient Engagement Platform to call attention to this broader meaning. However, it is not italicized when used by other organizations referenced in this context.
- Patient-Oriented Research (POR): A continuum of research that engages patients, focuses on patient-identified topics, and/or improves patient outcomes.
- Patient Engagement in Research (PER): Meaningful and active collaboration of patients in governance, (including ethical and funding review, and as members on a research advisory committee); across the research process in any or all phases i.e. preparation/planning, design/execution, and translation/dissemination (can include priority setting).
- Meaningful patient engagement refers to ACTIVE patient participation as partners in any or all phases of the research process: preparatory/planning, design/execution, and translation/dissemination. Additionally, patient engagement can include active participation in governance (proposal and ethics review, and as members of advisory committees)
Note: Is informed by CIHR SPOR guiding principles of inclusiveness, support, mutual respect, and collaborative building; other foundational principles relate to valuing reciprocal relationships, collaborative learning, partnerships, trust, transparency, and honesty; and “legitimacy, credibility, and power” need to be considered when engaging with patients.
The following additional resources can provide further information about specific areas of patient engagement:
- Alberta Health Services delivers health care programs and services to Albertans
- Patient and Family Engagement Toolkit (opens a pdf) includes tips for both patients and other stakeholders planning engagement activities.
Canadian Institute for Health Research (CIHR) is Canada’s federal funding agency for health research. The Strategy for Patient Oriented Research (SPOR) was launched under CIHR.
- Canada’s SPOR
- SPOR Patient Engagement Framework
- Jargon Buster (opens a pdf) is a glossary of lay language for health researcher terms
Canadian Depression Research & Intervention Network is a collaborative cross-Canada network of researchers with the mission of creating and sharing knowledge that leads to more effective prevention, early diagnosis, and treatment of depression and depression-linked illnesses:
- Training for People with Lived Experience (Patients) on Research Processes
- Next Generation Researcher Training on Engaging Patients in Research
Change Foundation – Ontario’s independent policy think tank, committed to changing the — debate, practice, and experience — in health care, so as to prompt system-wide improvements for patients and caregivers.
Should Money Come into It? A Tool for Deciding Whether To Pay Patient Engagement Participants.
INVOLVE – funded by the National Institute for Health Research to support public involvement in National Health Service (NHS) public health and social care research. This website has a number of useful tools and resources:
- Briefing Notes for Researchers from INVOLVE in the United Kingdom
- Payment and recognition for public involvement
- Advice on budgeting for public involvement in research
- Cost calculator for budgeting public involvement
- Policy on fees and expenses for members of the public
National Institute for Health and Care Excellence (NICE) – provides national guidance and advice to improve health and social care in the United Kingdom.
Patient-Centred Outcomes Research Institute (PCORI) – an independent nonprofit, nongovernmental organization located in Washington, DC, authorized by the Congress of the US in 2010. The goal of PCORI is to determine which of the many healthcare options available to patients and those who care for them, work best in particular circumstances. They do this by taking a particular approach to patient-centered outcomes research (PCOR), that addresses the questions and concerns most relevant to patients, and that involve patients, caregivers, clinicians, and other healthcare stakeholders, with researchers throughout the research process.