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| title | chunk | source | category | tags | date_saved | instance |
|---|---|---|---|---|---|---|
| Patient and public involvement | 2/3 | https://en.wikipedia.org/wiki/Patient_and_public_involvement | reference | science, encyclopedia | 2026-05-05T10:02:49.972651+00:00 | kb-cron |
Identifying and prioritising research. People with lived experience help to identify the right topics to ensure that the research is looking at what matters to them. Commissioning research. Involving members of the public in deciding which research proposals should get funding. Public members can also continue monitoring the research projects that get funded. Designing research. Public members help designing the research to make sure it is feasible, ethical and relevant. This happens usually before applying for funding. Managing research. Public involvement in the steering group or managing committee that oversees the research. Undertaking research. Members of the public help carrying out the research. This can include, for example, gathering evidence, reviewing literature, conducting interviews and focus groups, and analysing the results. Disseminating (sharing) research. Public members help sharing the findings of research. They can be consulted on the ways of dissemination, help summarising the research in plain language, work on accessibility issues. Implementing research. Public members influencing how the result is taken into practice and making sure it leads to action. Public involvement can be short-term and task-based or long-term across a research project or an institutional programme.
== Barriers and issues == There are a wide range of challenges and issues that can block the involvement of patients or hinder the process from being effective. Systematic issues can include a lack of adequate funding for implementing PPI. From the perspective of public members, many individual factors can influence if they can be involved in a meaningful way. Potential difficulties for patients might arise from health status, accessibility of locations, self-confidence, language proficiency and available free time. Issues might include public members not feeling that their contributions matter or that they gain anything by being involved. A vague definition of the role and uncertainty about the goal can also be a barrier for public members. Health professionals' lack of knowledge and understanding of public involvement theory and techniques can also be a barrier to public involvement. Involving patients simply as tokens or being dismissive about their contributions can lead to ineffective PPI and a negative impact on those involved. Power imbalances between people, hierarchical or elitist attitudes by medical professionals can also impair the experience and quality of patient involvement.
== Reporting == Despite evidence that public involvement can have a positive influence on health research, evaluation of its impact has been reported to be anecdotal and weak. This has led to the creation of multiple measuring tools to assess the impact of public involvement in research. Examples include:
GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research Public Involvement in Research Impact Toolkit (PIRIT) Public Involvement Impact Assessment Framework (PiiAF) The 'cube' framework
== Around the world ==
=== International initiatives === The International Patient and Public Involvement (PPI) Network was established in 2017. It brings together organisations and individuals from across the globe with the aim to share expertise and evidence-based good practice.
=== European Union === In 2012 the Innovative Medicines Initiative launched the European Patients' Academy on Therapeutic Innovation (EUPATI) which provides education for patients to enable them to meaningfully contribute to medical research and medicine development. Besides its international activity, EUPATI also has national platforms in more than 20 countries. EUPATI's publications include guidance documents on patient involvement in medical product regulation, ethical reviews of trials, research and development, and health technology assessment.
=== United Kingdom === In the UK, patient and public involvement is acknowledged in key pieces of legislation on healthcare such as the Health and Social Care Act and the NHS Constitution. The National Institute for Health and Care Research (NIHR), a research funder in England, is considered a pioneer in the development and implementation of PPI. The NIHR requires public involvement to be included in its funding programmes. They produce various resources such as the Learning for Involvement website which hosts training materials and best practices to support researchers with public involvement. The NIHR also funds the James Lind Alliance, an organisation that brings together patients, carers and clinicians to identify unanswered questions or uncertainties for future research to look at. The Shared Learning Group on Involvement aims to encourage shared learning about the involvement of people with lived experience (also called service users, patients, carers and other terms) between charities working in the UK.
=== Canada ===
In Canada the term patient engagement is used by the Canadian Institutes of Health Research (CIHR). Their Strategy for Patient-Oriented Research (SPOR) sets out the framework for patient engagement, stating that patients need to be involved in all aspects of research. SPOR is also the name of the scheme that provides funding for patient-oriented research. The Canadian Cancer Society, a non-profit cancer research funder also developed a patient engagement strategy and involves patient partners in research funding decisions.
=== United States === In the US, the Patient-Centered Outcomes Research Institute (PCORI) engages patients and funds research based on matters relevant to them. The Clinical Trials Transformation Initiative (CTTI), a partnership between the Food and Drug Administration, the National Institutes of Health, and others, also runs a project exploring the best practices for patient engagement and incorporating patient perspectives in clinical trials.
== Global health == In global health research the equivalent of PPI is called community engagement and involvement (CEI) or community and public engagement (CPE). Similarly to PPI, community engagement is the practice of actively involving local communities in the countries where the research takes place. Global health research often takes place in low and middle income countries (LMICs) and concerns marginalised communities. Involving these groups in research can reduce the potential for exploitation, address ethical concerns and bridge cultural differences.