Patient and Public Involvement
Patient and public involvement (PPI) refers to research carried out "with" or "by" members of the public, rather than "to", "about" or "for" them. PPI canbe achieved in different ways. A research team can collaborate with patient partners across some or all stages of a study, from problem identification to research dissemination. PPI can also be part of the structures and institutions of research, e.g. setting research priorities.
This page lists various national and international organisations that offer advice to researchers working in PPI. The organisations are general, meaning that their guidance can be used in different research specialities and settings.
Each organisation has its own definition of PPI and what it involves.
Get inspired by their different approaches and choose the organisation that best suits your project.
National Institute for Health Research (NIHR)
Facts
- Country: UK
- Founded in: 1996
- Link: https://www.nihr.ac.uk/
- Link to guidance: Briefing notes for researchers - public involvement in NHS, health and social care research.
What Is PPI?
- Definition of PPI: Research being carried out "with" or "by" members of the public rather than "to", "about" or "for" them
- Definition of people involved: "Public" refers to patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use such services.
Why Is PPI Important?
- Mission/vision: To create a world of active public research partnerships leading to improvement of health and care for all.
Patient-Centered Outcomes Research Institute (PCORI)
Facts
- Country: USA
- Founded in: 2010
- Link: PCORI.
What Is PPI?
- Definition of PPI: The meaningful involvement of patients, caregivers, clinicians and other healthcare stakeholders throughout the entire research process – from planning and conducting the study, to disseminating the results
- Definition of people involved: Patient partners.
Why Is PPI Important?
- Mission/vision: To help people make informed healthcare decisions, and improve healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.
International Collaboration for Participatory Health Research (ICPHR)
Facts
- Country: International (located in Germany)
- Founded in: 2009
- Link: International Collaboration for Participatory Research
What Is PPI?
- Definition of PPI: "(…) the goal is to maximize the participation of those whose life or work is the subject of the research in all stages of the research process. (…) Research is not done 'on' people as passive subjects providing 'data', but ‘with’ them to provide relevant information for improving their lives."
- Definition of people involved: People
Why Is PPI Important?
- Mission/vision: To establish participatory health research as an integrated part of local, regional, and national strategies to meet the needs of disadvantaged communities by addressing issues of health inequality.
Strategy for Patient Oriented Research (SPOR)
Facts
- Country: Canada
- Founded in: 2014
- Link: Strategy for Patient-Oriented Research.
What Is PPI?
- Definition of PPI: "(…) a continuum of research that engages patients as partners, focusses on patient-identified priorities and improves patient outcomes."
- Definition of people involved: "Patient" is an overarching term inclusive of individuals with personal experience of a health issue and informal caregivers, including relatives and friends.
Why Is PPI Important?
- Mission/vision: To ensure patient-oriented research that transforms patients and their families from passive recipients of health services into proactive partners who help shape health research and healthcare.
European Patients' Forum - The Value+ Handbook
Facts
- Country: Europe-wide (headquartered in Belgium)
- Founded in: 2008
- Link: https://www.eu-patient.eu/
- Link to guidance: The Value+ Handbook.
What Is PPI?
- Definition of PPI: Patients take an active role in activities or decisions that will have consequences for the patient community, because of their specific knowledge and relevant experience as patients. The involvement must be planned, appropriately resourced, carried out, and evaluated, according to the values and purposes of:
- The participating patients or patient organisations
- Other participating organisations and funding bodies
- The quality of patients' experiences during the involvement activity.
- Definition of people involved: Patients.
Why Is PPI Important?
- Mission/vision: To ensure equally high levels of patient-centred care and knowledge of good practice about patient involvement throughout the EU, with the involvement of patient organisations supported by the EU.