Public involvement

Introduction

To develop this guidance, we collaborated with RDS public contributors to find out what they thought that researchers needed to know about inclusion within patient and public involvement (PPI). Their perspectives are informed by their lived experience, different identities and experiences of working with researchers.

The first question, ‘How aware are you of EDI issues in public involvement?’ covers various sub-questions, such as:

How are you addressing your own training needs with respect to research inclusion?
How have you allocated time and space to address equality, diversity and research inclusion in public involvement?
How aware are you of how and why some communities/groups have been historically marginalised from research by virtue of socio-economic status, language, disability, age, health literacy, sex and gender, and ethnicity, and intersections of these?
Why do you think some groups or populations continue not to engage in research?
How aware are you about the different strengths and weaknesses of a range of public engagement methods (e.g. consultation, collaboration or participatory/user-led approaches)? Which approach suits your research aims and population(s) of interest?

Public contributors need to be assured that you have taken time to educate yourself both on research inclusion and on the previous experiences of their communities/groups in research. If you have not yet done so:

Examine the existing literature to see who has and has not been included in previous research relevant to your proposal, either as research participants or, where reported, public contributors;
Take time to understand how marginalisation, lack of knowledge about research and practical barriers have prevented some communities/groups – often those most under-served – from being involved in research;
Avoid diving straight in: this can cause harm, even if unintended, to already disempowered and poorly understood communities (Vincent 2018). This could further diminish their trust in researchers and make it more difficult, or impossible, for you to secure access to conduct your research.

In addition to doing this groundwork, you need to decide which model of public involvement is appropriate for your study; for example:

Consultation
Collaboration
Participatory, co-production or user-led approaches

These are characterised by varying levels of involvement: consultation offers the least opportunity for traditional power relations in the research process to be disrupted. In contrast, co-produced, participatory or user-led approaches are potentially the most empowering models of public involvement (see NIHR (2021a) public involvement briefing note 7; NIHR (2021b) co-production guidance; Ocloo and Matthews 2015).

Your chosen approach needs to suit your research aims and objectives, but research inclusion is highly relevant too. If you hope to include populations that have historically been marginalised and ‘done to’, a participatory or user-led approach may be more empowering and would share power more equitably (see NIHR (2021c) co-production in action case studies). When considering participatory approaches, do not under-estimate how much time will be involved in developing relationships and shared vision, mutual learning and training, communication and making decisions democratically.

Once you are ready to start planning your public involvement activities, the second question, ‘How will your public involvement strategy enable you to recruit and retain diverse public contributors?’, requires you to consider:

How will your public involvement recruitment strategy enable you to engage with a broad range of public contributors? If you’re already working with public contributors, which communities/groups are absent and how could you include them?
What are the benefits and drawbacks of contacting community leaders or ‘gatekeepers’ to access particular communities or groups?
How will you build relationships with the most relevant people/organisations that can support you to develop your understanding and access the most appropriate public contributors?
Do you need an experienced PPI lead/co-applicant to organise public involvement activities?
How will you support public contributors to understand what is expected of them?
What benefits are public contributors likely to gain from engaging with your study?
How honest and transparent will you be about the potential benefits of this proposed research, both to them personally and their wider communities?

Just as you would usually seek a diverse sample of research participants, perhaps recruiting from multiple sites, you should also consider where you recruit your public contributors from . The public contributors who are most accessible – perhaps those who belong to an existing patient or user involvement group – may lack diversity. A range of lived experience is required to draw out varied perspectives (Ekezie et al. 2021). People from groups or communities who do not readily volunteer to be involved in research may be labelled ‘hard-to-reach’. However, it is more appropriate to describe them as under-served and to scrutinise how we can better reach out to them and involve them.

Varied recruitment strategies will be needed to recruit a diverse public involvement group, such as:

Attending community events
Using social media (e.g. Facebook, Twitter, WhatsApp)
Developing links with places of worship and community venues
Reaching out to community leaders and activists
Giving talks on local radio (Centre for Ethnic Health Research 2018)

Often, the most fruitful relationships develop out of sustained community engagement. This is not a quick approach: it takes time to identify the most appropriate contacts, build trust and mutual understanding, and learn about the dynamics, values, and power relations within a particular community or group (Cowan 2020). It is not reasonable to expect one individual to speak for their community; rather, they are sharing their lived experience. Caution should be applied in situations where a community member tries to position themselves as a spokesperson.

Tips for recruiting and retaining public contributors

Be clear about the nature of the proposed involvement – you will probably need to explain what the difference is between public involvement and research participation. What tasks will they be asked to take part in? What is the time commitment? What is the purpose of it?
Value people’s lived experience and reward their involvement financially or in other ways (see NIHR (2021d) payments guidance).
To build reciprocal relationships, consider what else you can offer, such as training to develop public contributors’ skills and enhance their CVs, community education sessions to boost knowledge and understanding of their health condition, access to university facilities, or signposting people to other support and advocacy services where needed.
Be honest about the likely impacts of the research – this guards against disappointment further down the line. Your research is unlikely to be world-changing, certainly not in the short-term, and there is no guarantee that your public contributors or their families will personally experience improvement in the health or social care that they receive. You can explain that you are building an evidence base but that translating research into practice takes time.
Assure them that their involvement improves the chances of this research being relevant and meeting patients’ or service users’ needs.
Regularly feed back to them about how their input is shaping the research and thank them!

Depending on your background and prior experience, developing skills for public involvement and community engagement takes time. To facilitate this work and build your skills, you could include an experienced public involvement lead in your team. NIHR funding programmes require that a co-applicant or named member of the research team should be budgeted for as the PPI lead. Applicants need to show that this individual (or individuals, if the role is shared) has the relevant skills, experience and authority to coordinate the public involvement work (NIHR 2021e). Although it is not a requirement, where engagement and public involvement centres on under-served communities, it would be an asset for the PPI lead to have prior experience of these communities or groups (whether research- or practice-based, or through lived experience). Importantly though, no one should feel obliged or pressured into taking this role.

The third question, ‘How will you support and empower your diverse public involvement group?’, focuses on how to work effectively and equitably with your diverse public involvement group. Questions to consider here are:

How will public contributors know what is expected of them at each stage of the research process, and what they can expect from you?
How will you ensure that your communication and interactions with your diverse public contributors are based on respect, humanity and empathy?
How can you ensure that power is distributed equitably and fairly throughout the PPI process?
How will you ensure equitable access for your public contributors?
What training and support will public contributors receive to equip and empower them to engage meaningfully in PPI and research processes?
How will research inclusion be embedded in your ongoing evaluation of the PPI process?

Successful public involvement requires transparency, regular dialogue, and actively empowering public contributors to have a meaningful role in your research. It is important to clarify, not only at the outset, but throughout, what is expected of public contributors, particularly if these expectations change. Discussions should take place with and not simply about public contributors on these matters. The research team also needs to set out what public contributors can expect from them, for example, frequency of contact, availability of training and support, and promptness of payments. Opportunities for sustaining relationships with public contributors beyond the lifetime of the project should be sought (Jinks et al., 2016), but manage public contributors’ expectations so that they do not feel ‘dropped’ or forgotten when a project ends.

Building relationships with public contributors is crucial:

Incorporate opportunities for the research team and public contributors to get to know each other more informally. This will help to break down barriers of ‘them and us’ and fosters empathy and humanity.
Getting to know your public contributors will help to avoid making prejudgements about their identities, experiences or capabilities.
Avoid seeing public contributors as fulfilling a quota because they belong to a particular ethnic group, receive a particular type of care, or fall into a given age bracket. Their diversity will come from their overlapping identities and varied lived experience, beyond what is immediately visible.

A key challenge in public involvement concerns power relations. Public contributors may be intimidated by researchers’ qualifications, titles and long lists of publications. There may also be power differentials between public contributors, for example, resulting from different levels of experience of public involvement, or structural factors such as gender, ethnicity and age. Power imbalances can inhibit public contributors from being heard or feeling able to engage. Cowan’s (2020) report on learning from the Reaching Out projects encourages researchers to relinquish power and be prepared to take themselves out of their comfort zones. Some simple steps which can make a difference include:

Not using titles
Holding meetings in community venues and not in a boardroom format
Giving everyone the opportunity to speak
Ensuring that public contributors are not heavily outnumbered by research team members
Agreeing ground rules such as not interrupting and offering criticism constructively

In addition, be careful to distinguish between ‘focus groups’ as a qualitative research method and public involvement discussions. public involvement discussions should be freer than focus groups typically are and should not simply reflect the researchers’ agenda. Power dynamics will operate differently when comparing a focus group that is steered by a researcher and is relatively restricted in scope, and less hierarchical public involvement discussions which can stimulate researchers to think about their research in different ways, throughout its whole cycle.

Your ability to recruit and, importantly, retain a diverse public involvement group will depend on how inclusive and accessible your involvement activities and processes are.

Making your public involvement activities more accessible and inclusive

Ask individuals at your first point of interaction whether there are changes to your usual ways of working with members of the public that are required to support their involvement e.g. agreeing to circulate discussion documents in advance to allow individuals time to reflect before meetings, or making clear that carers and/or personal assistants are welcome to accompany them to meetings.
Find out about public contributors’ circumstances and needs so that any language and communication needs (e.g. the need for a sign language interpreter) or access requirements can be met.
Ensure that venues chosen for face-to-face meetings are physically accessible by default (see SCOPE’s guidance).
Schedule activities and meetings around public contributors’ work, care, religious or health commitments. Many working-age public contributors cannot take time off work or will lose earnings if they do. Consider varying meeting days and times to maximise involvement.
Financial support with travel and childcare/respite care costs will help to widen participation. Try to be flexible about how public contributors can be reimbursed: cash is preferred by many, though not all. If gift vouchers have to be used, offer a choice to avoid giving something that will be redundant.

Critical reflection upon, and evaluation of, your public involvement activities will help you to identify how you can improve public contributors’ experiences of involvement in your project. This will help to maximise the value and relevance of their contributions (see Gibson et al. 2017; Kok 2018). Issues to reflect on include:

Are some voices not being heard, and if so, why, and what can you do to empower them?
Might research inclusion issues account for some public contributors having less positive experiences of your public involvement activities than others?
How is public involvement impacting your research? Are you being sufficiently open to all perspectives, particularly those which challenge your own expectations or experiences?

With thanks to Cecily Henry, Pam Rees and Beauty Tshuma who co-developed the questions and the shape and key themes of this section, with the support of Naina Patel, PPI Lead at RDS East Midlands.

Key messages

Involving and listening to public contributors with diverse identities and lived experience will make your research more relevant and accessible. It is crucial if you want to study groups that have often been excluded from research.
To conduct inclusive public involvement, you may have to leave your comfort zone to hold meetings in community spaces, join in with community activities and share power more equitably.

Case study

Experience of establishing a Deaf Experts by Experience Group

Olivia Joseph, (formerly) Patient and Public Involvement and Engagement Project at the NIHR Biomedical Research Centre (BRC) in Manchester, wanted to set up a public involvement group for D/deaf* people to develop relationships between members of the public and Hearing Health researchers.

Initially, Olivia planned to include people with lived experience of hearing loss and British Sign Language (BSL) users who were born Deaf in the same panel. She initially found it difficult to recruit BSL users. She realised that her approach needed to change when she was put in touch with Celia Hulme, a PhD student at the NIHR Manchester BRC. Celia is a Deaf BSL user and her lived experience and academic knowledge helped Olivia to discover that there were problems with trying to combine the two groups. This is because Deaf BSL users have their own culture and identity and specific needs to address to facilitate their involvement:

Celia: "Many Deaf BSL users leave school with few qualifications and have low literacy skills which impacts on their access to training courses and feedback events. It was important to provide Deaf BSL users with an environment that is conducive to their language and learning."

Instead, separate panels were set up for Deaf BSL users and people with lived experience of hearing loss, and another for parents of Deaf children. Lessons learned included:

Lead jointly with a Deaf organisation or Deaf individuals to ensure that the approach taken is appropriate
Provide information in a range of formats for accessibility (e.g. Plain English, BSL, visual representation)
Written information can be translated into BSL and filmed to improve communication with Deaf BSL users. This tends to improve engagement, and videos can easily be shared to generate further interest.

To prepare Deaf BSL people to meaningfully participate in the group, a six week, Deaf-led training course was offered covering topics such as what is research, group work, ethics, the role of public involvement members and a mock research presentation. This was very well-received and has been requested by Deaf BSL users elsewhere in the UK.

*The term D/deaf reflects different preferences in terminology and the diversity of people with a hearing impairment. Deaf with a capital ‘D’ tends to be preferred by British Sign Language (BSL) users. Being Deaf may be experienced as belonging to a particular culture and community. In contrast, ‘deaf’ with a lower-case ‘d’ is more often used to describe people who with acquired hearing loss, and whose first language is a spoken language.

Read more about Olivia and Celia’s experiences of collaborating to establish this new public involvement group in their blog (including video in BSL) from 2019 for the NIHR Manchester BRC.

Useful links and resources

NIHR (2021) Public Involvement in Social Care Research
NIHR (2024) Disability Framework
NIHR (2023) Tips for researchers involving unpaid carers in health and care research
Volunteering centre websites are a good starting point for finding out about groups and organisations in the area(s) where your study will take place. Find your nearest volunteering centre at https://www.ncvo.org.uk/ncvo-volunteering/find-a-volunteer-centre

References

Centre for Ethnic Health Research (2018) Toolkit for: Increasing Participation of Black Asian Minority Ethnic (BAME) Groups in Health and Social Care Research. Leicester: ARC East Midlands.

Cowan, K. (2020) A practical guide to being inclusive in public involvement in health research: Lessons learnt from the Reaching Out programme, Southampton: NIHR INVOLVE. Available online at: https://www.learningforinvolvement.org.uk/wp-content/uploads/2021/04/NIHR-Reaching-Out_-A-practical-guide-to-being-inclusive-in-public-involvement-in-health-research-Lessons-learnt-from-the-Reaching-Out-programme-April-2021.pdf (accessed 22/04/21). (For more information about the Reaching Out projects, visit https://www.invo.org.uk/current-work/reaching-out/?print=print).

Ekezie, W. et al. (2021) ‘Patient and public involvement for ethnic minority research: an urgent need for improvement’, Journal of the Royal Society of Medicine. Advance online publication.

Gibson, A., Welsman, J. and Britten, N. (2017) ‘Evaluating patient and public involvement in health research: from theoretical model to practical workshop’, Health Expectations, 20(5): 826-835.

Jinks, C. et al. (2016) ‘Patient and public involvement in primary care research - an example of ensuring its sustainability’, Research Involvement and Engagement, 2: 1.

Kok, M. (2018) Guidance Document: Evaluating public involvement in research, Bristol: UWE Bristol. Available online at: http://www.phwe.org.uk/wp-content/uploads/Guidance-on-evaluating-Public-Involvement-in-research.pdf (accessed 5/05/21).

NIHR (2021a) Briefing note seven: approaches to public involvement in research. Available online at: https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371#Briefing_note_seven:_approaches_to_public_involvement_in_research (accessed 14/04/21).

NIHR (2021b) Guidance on co-producing a research project. Available online at: https://www.learningforinvolvement.org.uk/wp-content/uploads/2021/04/NIHR-Guidance-on-co-producing-a-research-project-April-2021.pdf (accessed 14/04/21).

NIHR (2021c) Co-production in action: number one. Available online at: https://www.learningforinvolvement.org.uk/wp-content/uploads/2021/04/NIHR-Co-production-in-Action-Number-One-April-2021.pdf (accessed 14/04/21).

NIHR (2021d) Payment guidance for researchers and professionals. Available online at: https://www.nihr.ac.uk/documents/payment-guidance-for-researchers-and-professionals/27392 (accessed 14/04/21).

NIHR (2021e) Definition and role of the designated PPI lead in a research team. Available online at: https://www.nihr.ac.uk/documents/definition-and-role-of-the-designated-ppi-patient-and-public-involvement-lead-in-a-research-team/23441 (accessed 25/10/2021).

NIHR RDS South East and NIHR Centre for Engagement and Dissemination (2020-2021) That co-production podcast!. Available online at: https://www.rds-se.nihr.ac.uk/podcasts/ (accessed 14/04/21).

Ocloo, J. and Matthews, R. (2015) ‘From tokenism to empowerment: progressing patient and public involvement in healthcare improvement’, BMJ Quality & Safety, 25: 626-632.

Vincent, B.W. (2018) ‘Studying trans: recommendations for ethical recruitment and collaboration with transgender participants in academic research’, Psychology & Sexuality, 9(2): 102-116.