Patient and public involvement
Public involvement in medical research refers to the practice where people with health conditions, carers and members of the public work together with researchers and influence what is researched and how. Involvement is not the same as participation which means taking part in research, for example taking a drug in a clinical trial.
Definition
Public involvement in medical research can be defined as research being carried out "with" or "by" members of the public rather than "to", "about" or "for" them. Through PPI patients, carers and people with lived experience work alongside researchers to influence and contribute to how research is designed and conducted. Members of the public involved in research are frequently referred to as public members or public contributors.Terminology
Researchers and others use different terms to describe how they interact with the public, and this can vary across organisations and countries. The terms involvement, engagement and participation are sometimes used interchangeably.The National Institute for Health and Care Research uses the term public partnerships to encompass the components of involvement, engagement and participation. It can be summarised as "a term to collectively describe ways in which patients, service users, carers and members of the public work with researchers, and health and care professionals, in the creation and use of health and care research". The NIHR's terminology differentiates involvement from participation where people take part in a research study and engagement which is sharing information and knowledge about research with the public.
Benefits and impact
There are a variety reasons and benefits why researchers involve the public in research. Besides the added value it is also often a requirement for receiving funding for research.Involving members of the public can improve the quality of research and make it more relevant and accessible. People with current or past experience of illness can provide a different perspective than professionals and compliment their knowledge. Through their personal knowledge they can identify research topics that are relevant and important to those living with an illness or using a service. They can also help to make the research more grounded in the needs of the specific communities they are part of. Public contributors can also ensure that the research is presented in plain language that is clear to the wider society and the specific groups it is most relevant for.
Involving the public in research is considered a way of serving broader democratic principles because people affected by research have the right to have a say in it. This also makes research more transparent and accountable for society. Public involvement can also make research more ethical. For example public members can help participants of a clinical trial understand what the research is about so they can make informed consent have an overall better experience.
Public members and patients have a range of reasons why they decide to get involved in research. These can include altruistic motivations, such as wanting to make a difference by contributing to a better healthcare or helping others with a shared condition get better care and treatments. Reasons for involvement can also stem from interest in a health topic or in research in general. It can also be a form of volunteering, working to ensure the representation of a community or a way to gain new skills.
Despite PPI becoming a more widely accepted part of the research process, the term PPI is sometimes perceived to be vague as a concept and there are questions around what counts as good public involvement. One of the initiatives aiming to improve the quality and consistency of public involvement in research is the UK Standards for Public Involvement. These were developed through a collaboration of organisations, researchers and practitioners, research funders and public partners across the United Kingdom. The standards provide a description of what good public involvement looks like and can be used as a tool to help people and organisations improve their PPI. The six UK Standards for Public Involvement are summarised as:
- inclusive opportunities,
- working together,
- support and learning,
- governance,
- communications,
- impact.
Types of involvement
There are different approaches to involving the public in research which correspond to different levels of influence that public members have in a research project:- Consultation. Asking members of the public for their views about a specific part of research and using these to make decisions.
- Collaboration. An ongoing partnership between researchers and the involved members of the public. Decisions about the research are shared.
- Co-production. Working together from the start to the end of the research project. Co-production requires efforts to make sure that participants share power and responsibility.
- User controlled research. Research that is actively directed and managed by service users and their organisations. They make decisions about the issues and questions looked at by the research.
There are wide range of ways how the public can be involved in different stages of research. These include:
- 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 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.
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
- Public Involvement Impact Assessment Framework
- The 'cube' framework
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