Ways to involve patients and the public in the research cycle

Ways to do this:

• Hold discussions with existing reference groups and charity networks.
• Invite patients and the public to an event or run a workshop or focus group.
• Attend meetings held by health condition specific groups (using an independent facilitator reduces the risk of researchers influencing the agenda too much).
• Conduct surveys and interviews.
• Invite suitable patient and public members as co-applicants on the funding application.

Learn more about co-applicants on the NIHR website.

By gaining public and patient support in identifying and prioritising research plans it:

• Ensures that research priorities are aligned with those of patients who have the condition you are researching.
• Ensures that outcome measures are meaningful and relevant to the people the research is intended to benefit.
• Can identify a wider set of research topics than would have been generated just by academics and health or social care professionals.
• Makes research more relevant – so that the research findings are more likely to benefit patients.
• Helps to reshape and clarify the research.

Think about reporting on the impact of involvement from the beginning. Record how the research priorities were developed and what were different influences on the research question at the beginning of the project.

Depending on the type of funding call you are applying for, research areas might have already been decided by the research funder or commissioner. Patients and members of the public might have been involved in the identification and prioritisation of these by the research funding organisation.

Sometimes it is difficult for patients and the public who are unfamiliar with research to identify research questions. It may help to first discuss challenges that people experience living with their condition(s), or using treatments or services, before discussing how these might influence your research direction.

It’s not too late to involve people if you have already identified a research topic – you can still involve patients and the public by asking them if the topic is relevant to them.

Most researchers have a range of topics or areas that they would like to research. PPI can work with researchers and research teams to decide which topics to focus on first. Listen, respond and talk through with them how their ideas can be included in your research questions.

Hold a workshop or focus group or online involvement for people to:

• review the research proposal including the plain English summary
• comment on the feasibility of the research design
• comment on and/or co-develop patient information leaflets, questionnaires or other research materials to make them more understandable to patients and the public

Take the research proposal and/or research materials to:

• A health condition specific patient and/or public involvement group or panel and ask for their views.
• The GOSH BRC Parent and Carer and/or Young Persons’ Advisory Group for research and ask for their views.

Focus groups enable researchers to explore contributors beliefs, perceptions and attitudes about a certain topic.

• discussion starts out broadly and gradually narrows down to the focus
• not a rigidly constructed question and answer session
• usually between 15 to two hours in duration
• typically consist of between six to eight people with a facilitator and co-facilitator
• the facilitators focus the discussion in a nondirective manner
• often result in unexpected insights
• people are often less inhibited than in individual interviews

By doing this it:

• Ensures the methodology is suitable.
• Ensures that researchers take into consideration:
  • What’s important to people - for example by prioritising outcome measures that are of most importance to patients with a particular condition.
  • What is likely to be acceptable to participants – particularly in controversial or sensitive research.
  • How the recruitment process needs to be practical and feasible.
  • How diversity and inclusion are being addressed in participant recruitment.
• Identifies aspects of the research that raise ethical considerations and provides a broader set of perspectives on solutions.
• Strengthens the ethical basis of the research and can help improve the recruitment and retention of participants in the study.
• Improves the informed consent process – making it easier for prospective participants to understand the research and its potential risks and benefits.
• Helps develop a budget for patient and public involvement in the research and ensures that the time and support needed for PPI is built into the research from the beginning.

Form a PPI research steering group or committee and work in partnership to:

• shape the research methods
• steer the study/project/trial through the research process

By doing this it:

• Ensures a patient and public and societal perspective is maintained throughout an individual research project.
• Improves the experience of and supports the recruitment and retention of participating in research checking that ongoing practical arrangements for participants are appropriate, culturally sensitive and a respectful use of people’s time.
• Ensures patient and public involvement in the research project is properly budgeted and funded and support systems are in place

Increasingly members of the public, for example, parent carers of a patient with a specific condition will have the expertise to take a more active role in research as collaborators in studies.

Be clear with the people you are involving about the fact that the funding process can be lengthy and that the research may not get funded.

It can be challenging to obtain funding to support patient and public involvement prior to a grant application being successful.

Think about reporting on the impact of PPI in design and management of research. Demonstrate to funders and commissioners that the research topic was important and relevant to patients and the public and that they had been involved in the design and management of the research by keeping an impact log of ‘you said’ and ‘we did’.

Ways to do this:

• Engage interested representatives from your PPI research steering group or committee to work in partnership with researchers to analyse and interpret research findings.
• Hold a small workshop or event to find out the views of a wider audience on the research findings.

By doing this it:

• helps to identify themes that researchers might miss
• helps check the validity of the conclusions from a patient and public perspective
• highlights findings that are more relevant to patients and the public
• provides training and support for PPI representatives to conduct peer interviews with research participants
• enables peer to peer support in terms of gender, age, ethnicity or experience of using a particular service or managing a specific health condition
• offers PPI representatives an opportunity for training and skills development

Read more about Patient and Public Involvement and Engagement (PPIE).

Ways to do this:

Engage interested representatives from your PPI research steering group or committee to work in partnership with researchers to:

• Co-develop dissemination of research findings to plan how best to report research findings to others through networks, newsletters and different media and formats.
• Co-develop progress reports or newsletters to keep PPI representatives and research participants informed throughout the project.
• Co-present at conferences, speaking to patients, support groups and service providers.
• Co-author journal and newsletter articles.
• Co-deliver ‘hands on’ activities at research engagement events.

Please note, PPI representatives often have access to groups and forums that researchers are not aware of.

From the PPI Focus Group there may be people interested in being involved throughout the lifecycle of the project as part of a PPI Steering Committee to help to guide/steer a piece of research or project through each stage of the study:

• design (designing the detailed protocol)
• recruitment (how to enhance a research participant’s journey in a research study or trial)
• co-production of easy-to-understand patient information
• analysis
• influencing the way research findings are put into practice

Look at your timeline and highlight when you will involve the PPI Steering Group Committee.

However, researchers should carefully consider whether this is the most appropriate approach to take and whether this is the appropriate setting in which to involve patients and the public. Would it be better setting up a separate Lay Advisory Group?

By doing this it:

Improves the communication of findings to participants and the wider public – providing information on the progress of the research as well as the final results.

• Ensures that information is clear and easy to understand for different audiences.
• Enables PPI representatives to become advocates and disseminators of research findings.
• Recognises the contributions made by PPI representatives throughout the life cycle of the research.
• Provides a training opportunity for PPI representatives in public speaking and co-authoring.

Involving people at the dissemination stage is more successful if they have also been involved at the earlier stages of the research as they then benefit from a sense of ownership of the research and an understanding of its context and background. This means they will be more likely to disseminate the results to their networks, to help summarise the research findings in clear user-friendly language and ensure that the information is accessible to a public audience.

Acknowledge the contribution PPI representatives made to the research when writing journal articles and reports.

Remember to include funding for PPI in disseminating the findings in your grant application and consider if you will need to allocate funding for developing and printing summaries and for postage.

Think about the impact of involvement for PPI representatives. Find out how they feel they have developed skills throughout the life cycle of the research project. Reflect on and plan how you will involve people earlier in your next project.

• Working with the people you involve, document and write up an evaluation of the patient and public involvement in your research recording short and long term impacts.
• This will help you for future projects and provide valuable knowledge for other researchers looking to involve patients and the public in their work.
• Help to build the evidence base and let others know about what worked well and what didn’t and the impact of public involvement in your research by:
  • including the information in your research reports
  • publishing information on the impact in journal articles.