Patient, Family Carer and Public Involvement (PPI) in Research – What, Why, and How

What is Patient and Public Involvement (PPI) in research?

One definition of patient involvement is Harrington et al. (2020):
”The active, meaningful, and collaborative interaction between patients and researchers across all stages of the research process, where research decision making is guided by patients’ contributions as partners, recognizing their specific experiences, values, and expertise.”

Why involve patients and the public in research?

The exact reasons why patients, family carers and/or the public should be involved in research will be specific to each individual project, but here are some general reasons:

It is a matter of democracy [2,3]. A lot of research is financed by public funding – this is one of the reasons why it is right to involve the public. Involving patients, family carers and the public as co-researchers/partners improves the transparency of and trust in the research.

Gain new perspectives. Patients and family carers can provide different and new perspectives than those of researchers [4]. They can contribute with their own expertise and lived experience of, for example, a disease and the effects of drugs and treatments.

Improve the relevance of research. Involving patients, family carers and/or the public can improve the relevance of research [4-6]. This can also be compared to the fact that virtually all commercial companies today start every product or service development process by consulting end users.

Leading scientific journals promote involvement. For example, The British Medical Journal supports what it calls an international movement towards the active involvement of patients and the public as co producers of research. Researchers submitting research articles must include a Patient and Public Involvement Statement.

Global organizations such as the WHO advocate for PPI [7]. The Declaration of Helsinki has also been updated in 2024 with the following text: “Meaningful engagement with potential and enrolled participants and their communities should occur before, during, and following medical research. Researchers should enable potential and enrolled participants and their communities to share their priorities and values; to participate in research design, implementation, and other relevant activities; and to engage in understanding and disseminating results.”

Empowerment. When patients, family carers and the public are involved in issues that are important to them, they feel empowered [8]. It is important to communicate back whether and how the involvement has led to changed decisions during the research process, so that those involved know whether their participation is making a difference.

Although many research funders have started to implement quite strict requirements for PPI, it is important to understand that PPI is a learning process because it occurs in different contexts with different conditions. It is not easy to implement PPI in practice [e.g., 9], therefore, we provide some tips on how to involve patients, family carers and the public as co-researchers/partners below.

How does one involve patients, family carers and the public in research?

Purpose. Start by carefully thinking through the purposes and methods of involvement before contacting potential patients and/or family carers. Think through how many co-researchers/partners should be involved in which phase of the research cycle and what level of involvement they should have. What should PPI help you as a researcher to better understand and how? It is important to understand that researchers have the initiator power. Listen to the views of co-researchers/partners on the purposes you have arrived at, be flexible and possibly adapt them during the course of the project.

Representativeness. Think through whether it is most appropriate to involve representatives from organization(s) and/or persons/family carers with lived experiences. In both cases, it is best to involve at least two people to gain a greater breadth of experience, increase the feeling of security and reduce the risk of power imbalance in the research group. Involving two people also increases the odds of consistency in participation, as someone may have problems joining every meeting/activity. Again, it is important to be aware of the power differences between co-researchers/partners and researchers. It is not uncommon for co-researchers/partners to consciously or unconsciously feel inferior, as academics and especially professors and doctors have a high status in our society.

Representatives of interest groups, such as patient organizations, are usually expected to be able to speak for their peers with a particular diagnosis or lived experience. In order to capture a wide range of different opinions and points of view, they need to have active communication with their network. One can also ask whether they were elected as representatives in a democratic way.

Representativeness is one of the biggest issues and obstacles within PPI. The National Health Council in the USA has published a roadmap to support reflection on this matter, but please also read Maguire and Britten (2017) for a more nuanced picture [10].

Specifying roles. It is a good idea to prepare a short text in plain language with bullet points describing the purpose of the project, the purpose of PPI and defining the co-researchers/partners role. Clearly specify how much time the co-researchers/partners are expected to contribute, and clarify meeting dates, times and locations as soon as possible. It is important to get the co-researchers/partners’ views on this document once you have recruited them and possibly revise it during the course of the project depending on their availability and circumstances.

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Co-researchers/partners can be involved in all parts of the research cycle

Defining and prioritizing research questions. Involving patients, family carers and the public in defining and prioritizing research questions helps ensure that those questions are relevant to the end user [4, 11]. Tips on how to do this can be found, for example, on the James Lind Alliance website. Co-researchers/partners can also be involved in evaluating applications for research funding from a patient perspective.

Refining the research questions/hypothesis. Co-researchers/partners can contribute with their perspectives and their lived experience in the work of refining research questions. They can be helpful in reviewing the literature and in highlighting what is important to them. These may even be views not yet present in the scientific literature or potentially quite different from what the researchers had thought. For example, it has been shown that patients with Duchenne muscular dystrophy found it more important to work on upper body strength than being able to walk longer [12]. To find out what is truly important for a certain group of patients and/or family carers, researchers can hold a focus group, a workshop, use an online questionnaire or similar methods.

Developing the project and ethics application. Co-researchers/partners can contribute by co-writing parts or the whole application with researchers. They can also review and comment on drafts. This helps to ensure that the text is relevant from a patient and/or family carer perspective and that it is understandable. Many research funders now also require patient and public involvement in the design of research funding applications [e.g. 13].

Co-researchers/partners can be involved in the development of all types of data collection documents such as questionnaires, covering letters and consent forms. This can not only help make the documents more relevant and understandable for study participants, it can also be beneficial, for example, in an ethics application process.

Conducting research. There are a number of ways in which co-researchers/ partners can participate in conducting the research. These depend on the design of the project, but here are some general examples. They may be members of the project steering group and thus have the opportunity to comment on the progress and development of the project or they could provide advice as an advisory group. They may participate in the work of collecting data, for example as interviewers with a peer perspective, which can provide more informative answers. If co-researchers/partners are involved in recruiting study participants, this can help to recruit more people.

Analyzing the data. It is possible that co-researchers/partners can contribute with other perspectives in understanding and interpreting the research data. For example, if the researchers are unsure about what some of the study participants meant, there is a chance that patient and family carer representatives can understand it, as they have similar lived experiences. They can also make suggestions on how to analyze and code the data.

Manuscript writing and dissemination. It is beneficial in several ways to clearly describe the contributions of co-researchers/partners to the research project [14] and/or to involve them as co-authors in scientific articles and other reports and documents arising from a project [15]. This not only shows co-researchers/partners that their contributions are valued, it also shows readers that the research team is progressive. Many publishers of research articles are now moving towards working more with the participation of patients, family carers and the public.

Co-researchers/partners can also help with the dissemination of research results. They may be better at explaining things in plain language (for example in “Lay language summaries”), and they may be able to contribute a personal story, thereby giving other dimensions to the “dry facts”. They may also have networks in which they can disseminate the results.

Implementing the findings. Today's researchers are increasingly expected to take responsibility for the use of their research, and there are ways in which co-researchers/partners can be involved. For example, they can lead the way in the use of a new treatment or push for the implementation of new treatments, methods or other changes. They can be a discussion partner in the planning and/or execution of an implementation effort and provide support in monitoring, evaluations and adjustments.

Considerations before involvement begins

Level of involvement. Once you have thought through how patients, family carers and/or the public can be involved during the different stages of the research cycle, you can also think one step further, namely what level of involvement is desired at each stage. Below is an example based on the Involvement matrix [2,16]

There are additional frameworks that can help in defining and specifying the role of co-researcher(s)/partner(s) – many of them can be found in Appendix 1 of Greenhalgh et al. 2019 [17]. 

Accessibility, support and plain language. It is important that researchers are aware of different aspects of accessibility and potential support needed. This includes any physical needs that co-researchers/partners may have due to disability or disease, but also emotional needs. In Canada, trauma-informed practice is recommended when working with indigenous populations. It is also important to use inclusive language when co-researchers/partners participate, and to avoid or explain technical terms and acronyms.

Compensation. It is important to remunerate co-researchers/partners for the time they spend on their involvement. Travel expenses may also need to be reimbursed. GPCC has a routine for engaging and compensating co-researchers/partners, which was created to also inspire other state universities and colleges.

The co-researcher/partner is compensated with a private taxable pay for agreed work including meetings within the assignment. Alternatively, the patient organization they represent, if one exists, can invoice for the work conducted.

Recruitment. If you are looking for members from a local or national patient organization, it is best to contact the organization directly. Some organizations have a group of patients and/or family carers who are willing to take on such assignments, and they may have received training in being co-researchers/partners (e.g. In Canada via the Patient and Community Engagement Research PaCER). If you are looking for people who are individual patients/family carers, you can, for example, put up notices in the waiting room of a relevant local clinic, or advertise in a local newspaper. There are also a number of social media forums for different diseases and conditions, such as Facebook groups, which are often very welcoming to researchers.

Evaluation and reporting

Influence and feedback loops. PPI in research can be a complex practice, but if you work in a person-centred way (i.e. you listen actively, strive for partnerships and follow up with documentation for continuity), you can reduce the risk of “tokenism” [18]. (Tokenism means that one does not involve patients and family carers genuinely.) By creating feedback loops using, for example, an impact log, you can show what their participation has led to, and you can make co-researchers/partners feel more seen and heard. In addition, with such a log you can learn together during the course of the project.

An impact log is a simple table, where you can start filling in columns 1 and 2 during a meeting or during the course of the work. After a certain time, you follow up on what all the important insights and advice you have received from co-researchers/partners have led to, and fill in column 3. These points are then communicated back to co-researchers/partners. See the illustration below with an example table.

There are many other evaluation tools and also more advanced versions of impact logs [e.g. 19-21].

Reporting of PPI. Projects funded in whole or in part by The GPCC are expected to follow good reporting standards, including the GRIPP2 reporting checklist on patient and public involvement in research [14].