People, families, caregivers, and communities with lived experience of a health issue(s) being actively and meaningfully involved and having a say in decision-making about the research process – including research priorities, questions, outcomes measures, design, methodology, data collection approaches, interpreting results, dissemination methods, and so on. It means that patients and/or members of the public move beyond the role of a research participants or subjects, taking an integral spot at the study team table as full partners and/or co-investigators in health research.
Patient/public partners can be involved in health research decision-making in many different ways and at all stages of the research process.
Patient and public engagement will increase the quality, appropriateness, acceptability, transparency and relevance of research by ensuring health research addresses topics of importance to families, caregivers, and communities with lived experience of a health issue(s). The ultimate goal being to improve health outcomes for ALL Manitobans, as well as an enhanced healthcare system.
- Inclusiveness (i.e. integrating diverse patient and public perspectives, and research that reflects diverse contributions);
- Support for patient and public partners to be able to fully contribute (i.e. creating safe environments, anti-oppressive and trauma-informed approaches, appropriate training, education and compensation);
- Mutual respect and partnership (i.e. the value of experiential knowledge is recognized by all research team members);
- Co-building (i.e. public, patients, health researchers, decision makers, policy makers and health care practitioners work together from the beginning to identify problems and gaps, set priorities for research, and collaboratively produce and implement solutions);
- Co-learning (i.e. patient and public partners learn more about the research process and researchers learn more about patient-centred engagement);
- Reciprocal relationships (i.e. shared power and decision-making); and
- Transparency, honesty and trust (i.e. open communication, reflexive practice and conflict resolution).
- People being recruited to a clinical trial or other research study, completing a questionnaire or participating in a focus group as part of a research study;
- Science festivals open to the public with debates and discussions about research;
- Open days at research centres where members of the public are invited to find out about research;
- Raising awareness of research through media, such as television, newspapers and social media;
- Dissemination to participants, colleagues or members of the public regarding findings of a study.
- Help identify research priorities that matter most to people living with the health issue under study.
- Help shape and clarify research questions so they reflect the needs and concerns of patients, informal caregivers and communities.
- Help ensure the methods proposed for the study are appropriate, acceptable and sensitive to the very real context in which patients and informal caregivers live, work and play.
- Help ensure research uses outcomes that are meaningful to patients, informal caregivers, and communities.
- Help ensure that the language and content of the information provided to participants in studies is appropriate and accessible (e.g. questionnaires and patient/participant leaflets).
- Help increase participation in a research study by: making sure the research is appropriate and acceptable to potential participants; improving the information provided so people can make informed choices; and helping to include voices that are traditionally less heard in health research.
- Identify a wider set of research topics or new areas of research.
- Interpret research findings from the perspective of people with lived experience and informing recommendations that will help improve the lives of patients, informal caregivers, and communities.
- To help ensure research reflects the concerns, interests and values of the public and that money and resources are used efficiently.
CIHR's Strategy for Patient-Oriented Research defines patient-oriented research as a continuum of research that:
- Engages patients as partners;
- Focuses on patient-identified priorities;
- Improves patient outcomes;
- Is conducted by multidisciplinary teams with relevant stakeholders; AND
- Aims to apply the knowledge generated to improve healthcare systems and practices.