Collaborative Resource: Patient & Public Involvement & Engagement (PPIE) at Imperial

Representatives are recruited from the relevant community, and are part of regular meetings or focus groups, particularly at the start of the design phase of the project. They support the basis of the project, aid in the drafting of the project documents (including the SOP, Participant Information Sheet and Consent Forms, amongst others), and help disseminate the work within their community.

A process that’s difficult to achieve as it’s about sharing power with the patient representatives, for example, the PR have just as much decision-making power as the research team, and may even be involved in the execution of the project. This is the most time-consuming form of PPIE. It takes time to build trust and can be expensive as it may require reimbursing representatives for their time in a more significant way than other PPIE (particularly if they are supporting the execution of the project).

Information being shared with the public such as talks and events, sharing research findings, media communication, community outreach etc. Note that this is different to public involvement, public engagement is about raising awareness of / sharing and disseminating the work.

Actual research participation, where the research is being done “to, for or about” a group/member of the public. For qualitative research, this can blur the lines between involvement and participation, as a qualitative project may ask questions that have more broad answers/where the answers describe other members of the community, not just that one participant e.g. an answer along the lines of “I’ve heard it said by others that…” or “Lots of people feel/experience that…” etc.

All payments to PPIE representatives and participants must be made promptly and securely. You should never be keeping participants waiting on their remuneration.

If there are any issues with the payment process, keep participants updated – Be transparent!

As a standard estimate:

• £25 per hour per person (over 16yrs)
• £5 per meeting for working from home, per person
• Reimburse travel costs where needed
• PPIE Lead and staff salaries where applicable

As a standard estimate, consider:

• Venue costs
• Access costs e.g. interpreters, assistive technologies, childcare etc.

As a standard estimate, consider:

• Refreshments
• Recruitment costs
• Dissemination costs
• Training costs where applicable

When planning your PPIE, you should consider:

• Do the representatives need experiential knowledge of a condition or service? Consider carers too.
• Do they have capacity to be involved or do their carers or other people need to be involved?
• Do they need any specific skills, or can they be trained/supported to better fill the role? Make sure they are able to have their voices heard.
• Be mindful of diversity and ensure you involve under-represented groups wherever you can. Experience, characteristics, and intersectionality – Make opportunities accessible!

• Communities – Build trust and rapport by speaking to people from communities you’re trying to reach, and find the best way, place, and time to engage with them.
• Try a variety of methods, not only online – You can put up flyers, send out emails, and ask for support from community leaders. You can even ask for support from the NHS, like advertising in relevant clinic spaces.
• Go to where people are: This could include religious outreach, charities, community centres and events, flyers, social media, PPIE networks (e.g. PERC, or VOICE, Young Persons Advisory Network, North West London Community Champions Committee, etc) and online public involvement platforms, amongst other things.
• Be clear what’s in it for them – Clearly state any benefits to participation, and be up front about remuneration.

The NIHR has excellent resources on PPIE, including on how to recruit contacts. In the design of your project you should be aiming to adhere to the UK Standards for Public Involvement wherever possible – Note that many grant and ethics applications will directly ask how you are involving patients and members of the public in your project, and you must have a significant justification if you do not intend to conduct PPIE processes.

The easiest way to recruit PPIE contacts is to identify the community, or communities, that will be affected by the outcomes of your project and find out if there are any existing PPIE and research channels you can access for volunteers. This could include:

• Charities
• Hospital clinics
• Patient Support Groups
• Dedicated PPIE recruitment groups

Ensure you complete due diligence for any organisation you seek to work with, check their history and research their overall aims and goals.

When recruiting volunteers, it is vital that you make the process inclusive and consider any limitations that may be specific to the community you’re working with.

For example, for a project involving the deaf community, your working groups may need sign language interpreters with the skills to interpret specialist (such as medical) language accurately and smoothly.

If your project involves a community with a high number of wheelchair or other mobility aid users, you must ensure that all meetings are accessible both in person and online.

If your project is international or focuses on a community where English is not the primary language, you should have specialist translators for all sessions, and all materials should be available in relevant languages, including braille.

Just as with recruiting study participants, it is vital that no one is excluded from participating in PPIE due to poor accessibility.

An important topic to consider is financial reimbursement for PPIE. As mentioned in the above “Budget” section, good rule of thumb is to treat this similarly to your actual participants. You may not be able to completely pay them for their time, depending on your grant’s or financial support’s rules, but you should at minimum be reimbursing items such as travel costs and providing refreshments at long sessions or focus groups. Where possible however, you should aim to pay your PPIE volunteers for their time – This will usually mean setting a reasonable hourly rate. This further reduces the barrier to entry for participants from all backgrounds, and as such it is prudent to include the cost of reimbursements and payment for time within your proposed budget (check your funder’s guidelines for any relevant policies).

There are various ways to involve the public in your work, depending on what kind of involvement and responses you’re looking for. Consider:

• Surveys
• Interviews
• Focus Groups and workshops
• Arts-based approaches – Particularly useful where you’re asking people to share their experiences or emotions on a topic.
• Public Steering Group – For when you’re looking to be advised by the community your work focuses on.
• Wider Management Group – When you need a patient/public perspective within the scope of management decision-making. This approach requires that you carefully consider power dynamics within the group you set up.
• Peer Researchers – Under the Co-Production umbrella, this approach is especially valuable for when you are interacting with, or completing research on a community that may be less trusting of researchers. Having people from that community operating on the research-side of a project, can make their peers more comfortable in participating.
• Co-applicant – Also under the Co-Production umbrella, this approach is when a member of the public will be a formal member of the research team.

The best practiced, and most common, methods of PPIE are public steering groups and focus groups/committees of relevant members of the public.

When preparing for PPIE, you should be considering:

• The type of research you’re conducting and tailoring your PPIE processes accordingly.
• How can you appoint people?
• The approach depends on the role the representative will have, but it may be useful to post a short application form asking about demographics and motivations. You may need a quick phone call or interview to shortlist/finalise applicants. However, carefully consider the intended recipients e.g. for communities with English as a second language, a written form may be intimidating.
• What will they gain from participating? This isn’t just about remuneration, you can also leverage the social interactions people will have and the sense of community they may gain from participating.
• Transparent shortlisting processes e.g. did people meet the criteria? You should also give feedback to those not appointed.
• Keep participants involved and updated.

Capturing Impact is all about “conversations” – How can you capture what’s said by the participants whilst remembering that different people even in the same group will give different results? It is usually beneficial to incorporate a mixed methods approach, utilising both qualitative and quantitative methods.

• Capture impact from the start including recordings of meetings (make sure you clearly notify participants if sessions will be recorded), take high quality notes, or perhaps even ask for written summaries or feedback from the session participants.
• Consider the context – Who, when, how people were involved? How did you approach the PPIE, did you do the PPIE well enough? How has PPIE improved your work?
• What changed from what PPIE said? How has it impacted:
  • You?
  • The project?
  • The members of the public?

Additionally, you can enact a “you said, we did” update at the start of each session if you have more than one session. This keeps the PPIE participants in the loop about the impact their work is having, and also demonstrates that you value their inputs. Take a look at the GRIPP2 Checklist – Academic Tool for more information.

You should always share your results with the people you involved first, as well as within the wider community.

Use plain English language, infographics, blogs, and easily digestible information formats. Carefully consider the accessibility requirements of the community, including making dissemination available in appropriate languages, braille, or with specific colour schemes or formats that support conditions like colour blindness or dyslexia.

Involve your PPIE participants in coming up with ways to make your research more accessible and engaging, and, where possible (and appropriate), co-author papers / co-present at conferences.

Don't forget: Good PPIE is conducted from start to finish! Include your PPIE reps in dissemination, and credit them appropriately.