Public involvement in public health research - guidance for applicants

1. Creating the study team

✅ Include someone that has experience or expertise in working in PI who is responsible for the PI aspects of the study and can speak up on issues relating to PI.  Just as you would (in most cases) include a statistician.

“The PPIE lead for the project is an ex-teacher who facilitated [a similar, more intensive, intervention] and is PPIE lead for [similar, more intensive, intervention] in primary schools”. 

✅ Ensure you have a large team with a good skill mix and be clear whether anybody in the team has lived experience or represents relevant organisations. 

“The PPI lead has a strong personal and professional connection to the target population. He has personal experience of the asylum process and of being granted refugee status in the UK, and he also has lived experience of mental ill-health”.

“The project team comprises of members from key third sector organisation both within Wales (Welsh Refugee Council, Mental Health Foundation) and globally (Centre for Victims of Torture), as well as two sanctuary seekers.”

✅ Ensure that you have sufficient resources to coordinate and support public involvement throughout your research, including at the initial planning stages when you won’t yet have been awarded your grant.

NIHR Resource: PPI payment guidance for researchers and professionals 

2. Developing your research project

Who to involve and engage with?

✅ Stakeholder mapping is a key step in determining who to interact with when developing your research project. One way to think of this is who is going to be IMPACTED by your research.  Don’t just consider who the participants are, but everyone that the research will have a bearing on. This helps define who your public involvement partners will be.

NIHR Resource: Different experiences: A framework for considering who might be involved in research. 

Below are some examples, but are not limited to:

✅ Ensure people in these groups are diverse and as representative as possible of those you’ll be engaging/ studying/ involving/ targeting in your research. 

Resource: UK Standards for Public Involvement: Inclusive Opportunities 

Resource: Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project

“[A] NHS CCG commissioned a qualitative scoping study for us to gain views from key stakeholders, including young people, parents of children with a history of suicidal behaviours, teachers, mental health professionals and General Practitioners.”

“Initial scoping work included interviews with staff from third sector organisations, the NHS, and sanctuary seekers themselves”.

“Public advisors have been involved in designing this study and will be involved throughout. Three parents with lived experience and youth associations working with young people at risk of suicide are working with us”

✅ Together with the public involvement representatives you’ll be working with, develop agreement on payment, expenses and recognition prior to involvement. This includes agreeing payment for the services of voluntary or user-led organisations if using these as gateway organisations to reach your public partners.

NIHR Resource: PPI payment guidance for researchers and professionals 

How to engage public involvement partners?

NIHR Resource: Being inclusive in public involvement in health and care research

NIHR Resource: Improving inclusion of under-served groups in clinical research.

• Establish and build relationships with respected/trusted members of the community as they can act as “gatekeepers” to other members of the public. 

• Identify already-established PPI groups or people or organisations that already work with your target audience. For example:

• Organisations that work with asylum seekers

• Groups that have been set up to provide the young person’s voice (e.g. Decipher in Wales)

• Research ready schools exist in some areas which may provide an easier starting point

• Link in with Health Determinants Research Collaborations (HDRCs).  

• Consider innovative and creative approaches to involving less represented groups and those with protected characteristics and ensuring diverse perspectives are heard and listened to.

Key considerations:

• Flexible approaches to involvement and engagement

  • Face to face / online / alternatives such as Padlet when working with children and young adults

  • Group or one-on-one discussions for best engagement

  • Timing and location of meetings so it’s possible for your target people/groups /to engage.

• Who is best placed to facilitate running focus groups or workshops?

• Ensure those involved in focus groups, for example, feel free and able to engage. Will pupils talk if teachers or parents are present? Will teachers talk freely if governors are there? Is there an interpreter? 

“PPIE with schools will involve workshops with 10 year-9 students (diverse by gender, ethnicity, school engagement), 5 staff (diverse by role/seniority) and 5 parents (diverse by gender and ethnicity). Optimisation will also involve 2 PPIE meetings each with a group of young people and of policy/practitioner stakeholders”

“Young people thought that online focus groups are acceptable for discussing a school response to self-harm on the basis that groups are small (max 5 participants) and offer the option of an interview, and younger and older participants are in separate groups.”

“We have worked closely with four ASRs in developing this proposal… It was suggested that any activities with ASRs need to be conducted in pre-existing facilities/groups (e.g., asylum support centres) or faith organisations. This discussion resulted in a change in the plan for venues for workshops/symposium.”

What to explore with public involvement partners?

NIHR Resource: Ways that people can be involved in the different stages of the research cycle - Identifying and prioritising research

• What are the important research questions? 

• What outcomes are important to them? 

• How to ensure diversity in public contributors and research participants

• Level of burden on public involvement partners as well as level of burden on participants and stakeholders if they were to be participants in the research

• Feasibility of running the research

• What interventions are best to evaluate? 

• Is the research valuable/useful/ wanted?

• Meaningfulness of the research

• Always consider the wider determinants of health 

• Will the research make a difference?

“We contacted 10 leads of relationships, sex and health education in secondary schools. All indicated that student mental health is worse than pre-pandemic. All said their school would be interested in an intervention that improved student sense of belonging via brief intervention. Participants thought that in particular year 9 would benefit from intervention. PPIE with DHSC, DfE, Education Endowment Foundation, and trade union stakeholders focused on how implementation could be integrated into school practices. DfE requested we include life satisfaction as an outcome”.

“We spoke to young people with lived experience who indicated that they would like to take part in such a study. We specifically asked for their views about the study aims and methods. YP thought that proposed outcome measures are acceptable and indicated their preference for completing them online, in their own time”.

“We have worked closely with four ASRs in developing this proposal, which is shaped by their experiences, perceptions, and priorities. The members discussed how ASRs have no control over their situation. They highlighted the importance and relevance of peer support in mental health (MH) and reported awareness of many ASRs in their networks with anxiety and depression. They suggested highlighting the issues of ASRs in general rather than focusing on one specific country. It was suggested that any activities with ASRs need to be conducted in pre-existing facilities/groups (e.g., asylum support centres) or faith organisations.”

3. During your research project

NIHR Resource: Ways that people can be involved in the different stages of the research cycle - managing and undertaking research   

✅ENGAGE: Ensure regular engagement points throughout the lifecourse of the project with your public involvement representatives. Public involvement representatives can help in a number of ways, including:

• Ensuring you have engaged the right communities to meet recruitment milestones

• Informing how you can meet recruitment targets

• Co-producing recruitment and other materials

• Carrying out interviews and running focus groups

• Assisting with data analysis and interpretation

You should also:

• Consider how you are meeting and engaging with your PI groups, how you are bringing them together, how often, and how you and they are interacting together.  Are you able to be flexible to meet their needs to enhance their engagement? Change these interactions if necessary.

• Consider basic access needs and requirements when meeting and engaging with your groups, offer refreshments and make people feel comfortable and valued to build rapport, trust and mutual respect.

• If your recruitment and retention strategy isn’t working, then go back to your groups to discuss again and continue to engage with them.

“Throughout the program: We will engage carers, young people, and other professionals working within schools, communities and children’s mental health settings to become members of the project advisory group. Meetings will take place 4 times a year (8 times for the research programme). One representative per group has been costed in to attend the monthly research meetings. One/two members of the parent and youth groups will attend 4 TSG meetings and be involved at each stage of the research, from the design, analysis, interpretation of findings, dissemination and further implementation work. Two members of the TSG will also attend the parent and youth  groups to feed information from each group.”

“Involvement in our advisory groups will be flexible and will use multiple methods to ensure members can engage according to their abilities and preferences.”

“We will work closely with our lived experience advisory panel (LEAP) throughout the project duration and hold quarterly meetings to seek advice, discuss progress and initial findings. The LEAP members will be provided with induction training and will receive ongoing support. We will hold meetings with the LEAP members and discuss and agree the level of involvement as suited to them. Members will provide input on search strategy, developing culturally appropriate participant-facing materials such as participant information sheets and consent forms. They will also be involved in workshop schedules, recruitment strategy, analysis of qualitative data and review of preliminary findings from evidence syntheses, co-production of guidance, plain English summary, dissemination, and curating legacy. We will offer translation, transport costs, creche/caring cost and reimburse for time to overcome language-related and other practical barriers for engagement and involvement in research.”

“We will make every reasonable effort to retain all members throughout the project. We will use ‘evaluating public involvement in research’ guidance and create an impact log to record outcomes of each PPIE activity detailing the discussions and impact (outcomes). We will provide detailed feedback to PPIE contributors detailing how their contributions shaped the research and will discuss opportunities for continuous engagement and involvement in future research”

✅UPSKILL: Take opportunities to upskill your public involvement representatives throughout your research project. This is important for their personal development, building CV’s and overall confidence in getting involved and engaging with research. 

“PPI members will be thanked for their contribution, kept up to date on the progress of the study, and given feedback on how their contributions have made a difference. Learning and development opportunities will be available to support and recognise the value of the contributions made by members of the public within all dissemination activities, e.g., in reports, publications, posters and presentations.”

“One of the key aspects of this project is developing the capacity of ASRs as peer researchers. We will train three ASRs as peer researchers to co-facilitate workshops and meetings and support data analysis and report writing, as well as in public engagement and advocacy for ASR communities. We will collaborate with the above listed organisations and community groups to identify individuals  who may be interested in participating as peer researchers.”

4. After your research project

NIHR Resource: Ways that people can be involved in the different stages of the research cycle - disseminating research   

✅DISSEMINATE: Use your public involvement contributors to help you reach all appropriate stakeholders with your findings.

“We will organise a project symposium (venue to be decided by public contributors) and invite ASRs, representatives from local/national government, voluntary sectors and community organisations, and academia and international agencies (n=80). Based on the study findings, we will discuss strategies to embed peer support in relevant policy and practice and identify political and institutional processes that may hamper or facilitate the scaling up response”. 

“Working closely with the University communications team and a production company, we will develop an infographic summary and video using findings from the study. We will create an animated video with voice-over and subtitles in languages prioritised by participants as an accessible way to inform wider migrant groups. We will curate all project resources on open access platforms to be used by ASRs, further public health programmes and projects.”

Summary of what to include in your application

• How did you go about your PI?

• Who did you reach out to? Were they diverse and representative of your target audience?

• What did they say and how did they influence the proposed project?

• Do you have a public co-app (not a requirement) or a public voice on the steering group?

• Who is going to lead the public involvement workstream of the research and ensure the public voice is heard throughout? 

• What public involvement is planned throughout the project?

• How will PI be supported and remunerated? 

TIPS: 

• At stage 1 you need to be concise and demonstrate that you have done the above.

• Consider using a readability checker on your plain english summary.  Links to resources can be found here

• The NIHR has agreed support costs for translation services.

• Funding sources for this pre-work can be sourced from Research Support Service / University funds

For further information and guidance, contact the Research Support Service Specialist Centre for Public Health and/or Research support for public health hub. 

Further examples of Stage 1 summaries

“PPIE members will be supported by a designated PPIE Lead who will oversee all PPIE activities, regularly communicate with panel members to provide project updates, organise meetings, and offer training and support. Panel members will be remunerated and work with us on recruitment, the development of the study procedures, participant materials, plus knowledge mobilisation and transfer”.

“The development of this proposal has considerably benefited from and been shaped by feedback from a leading mental health charity and two senior school staff who are responsible for the mental health provision in their schools (Assistant Headteacher and a School Mental Health Lead). Both said that their staff are time-poor, and it is key that training does not impinge on their time. If the modules are short and bite-sized then they would fit well in the continuing professional development time that staff are allocated”. 

“The application has been developed with the active involvement of both PPI and key stakeholders. We have two PPI co-applicants on the bid who will remain involved throughout the duration of the research. Additionally, we have ensured we have consulted with children and young people as well as teachers at four schools involving 85 pupils using a mixture of practical and classroom-based activities which helped inform our understanding of current intervention delivery and children’s views on the intervention and the impact on their emotional wellbeing. Key stakeholders include Public Health representation and the Royal College of Psychiatrists Eco CAMHS who have also been actively involved in the development of the application and are collaborators on the application.”

“The study idea has been influenced by feedback from asylum seekers who are supported by third sector organisations. There is a nominated lead for PPI and two patient/public representatives are named as co-applicants on the study who have lived experience of the asylum system. These representatives will be full and equal members of the research team, and we will also recruit two PPI members to an independent oversight committee.”