Patient and Public Involvement and Engagement (PPIE) is becoming more and more popular with funding bodies and academics, and rightfully so! It is the most important way to establish whether your research is relevant for those whom it is supposed impact and benefit.

Before starting my PhD here in the KCL Health Psychology Section, I worked as the PPIE Lead at the Centre for Adolescent Rheumatology at UCL for three years (http://www.centre-for-adolescent-rheumatology.org/about-the-centre/ the website itself was designed through PPIE contributions based on what young people wanted!). I’m sharing some of my tips that I have learned along the way, supporting researchers to involve patients, families and members of the public, as well as advice from some of the people who were involved, in true PPIE style!

This post will be split into two parts: Part 1 will be a general introduction to PPIE and Part 2 will be focused on how to involve young people specifically.

 Introduction to PPIE

What on earth is PPIE?
“Research being carried out ‘with’ or ‘by’ members of the public/patients rather than ‘to’, ‘about’ or ‘for’ them.” INVOLVE

Participation – where people take part in a research study – complete questionnaires or give blood.

Involvement – where people are actively involved in research processes and management.

Engagement – where information and knowledge about research is shared with the public.

Sometimes the term engagement is also used to mean involvement as seen here by the National Co-ordinating Centre for Public Engagement definition:

“Two-way process, involving interaction and listening so that the activity and benefits of higher education and research can be shared with the public, with the goal of generating mutual benefit.”

“No matter how complicated the research, or how brilliant the researcher, patients/carers and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost effective.” Professor Dame Sally Davies, Chief Medical Officer, England, 2009

There are several levels of involvement:
Consultation – researcher(s) asks for views/advice from patients/public
Collaboration / co-production – researchers and patients/public work together, e.g. to identify research questions
User led / controlled – patients make the decisions about research, e.g. principal investigator

Ways to involve:
• Research prioritisation and validation of importance
• Developing Ethics application
• Patient partners/co-applicants on grants
• Writing lay summaries for grants
• Membership on patient steering group/advisory board as patient/public representatives
• Changes to study design and methodology, including selection of final study measures e.g. which questionnaires to include or not and why
• Suggestions on practicalities/feasibility of data collection e.g. recruitment strategies
• Developing and reviewing any materials that potential participants may see as part of the research (e.g Patient Information Sheets, Consent Forms and/or Interview Schedules), to make these more patient centred and relevant
• Content development for dissemination events and on social media

Most important considerations before conducting any PPIE activity:

(Image obtained from https://pixabay.com/en/questions-font-who-what-how-why-2245264/)

Hema’s General Tips
1. PPIE is not always expensive but needs funding!

2. Quality over Quantity – a few key statements or suggestions from 3 or 4 people that is implemented to change the project is better than involving 15 people without actually changing anything.

3. When involving patients, remember you are talking to someone who has a long-term illness – be sensitive and age-appropriate when working with young people and parents.

4. Prepare for rejection and disappointment – not everyone wants to be involved or will actually turn up to your planned event.

5. Try to have at least 5 people confirmed for an activity, and maximum 10 (usually 2-3 do not show up).

6. Appreciate how much time is involved beforehand, on the day and afterwards when writing up – Start recruiting about 1-2 months ahead and offer a few different dates and times for people to choose from, e.g. meetings after 6pm or on weekends, so that patients/carers who work or go to school can be included.

7. Focus groups are not the only way! Feedback via Email, Interviews or Clinic approaches are also helpful.

8. PLAN PLAN PLAN ahead but…be flexible! Not everything will go to plan but activities can still be engaging and successful if you’re able to adapt.

9. Use the research team’s strengths (and others!) – if someone is creative in your department get them involved in your event too!

10. What about afterwards? Will you keep the patients involved, updated with the research activity? What have they received in return? Think about what young people/parents will get out of this activity – opportunity to chat to someone about their experiences, work experience, provide references/certificates for involvement.

Public Engagement and Outreach
Here are some questions to think about when doing public engagement which is subtly different to activities mentioned above:

What message do you want to disseminate? Who is your audience?
How can this be explained in a fun and interactive way?
What things can you give out? Leaflets/Pens?
What activities can you run?
Can you turn this into involvement? Can this be a two-way conversation?

Here is an example of a research stand at a public engagement event (taken from @UCL_RheumAYA), where you can see we tried to explain rheumatology and immunology through an interactive game “When Cells Attack!” and we had bone pens as cool freebies!

Writing up PPIE activities for ethics/grants
When writing your PPIE work up for both grant applications and ethics, the key aspects you need to demonstrate is what PPIE you have carried out and what has changed as a result in your research study.

For example, state the number you have involved (and age ranges and diagnoses if appropriate) and how they were involved (e.g. focus group to discuss proposed study measures) and what changes were introduced (e.g. selected to use the brief version of the questionnaire as young people felt the long version was repetitive and too long and included a mood questionnaire as this was felt to be missing from the study and important to include).

Ongoing PPIE and particularly training and support for your patient partners needs to be included as well as appropriate costs.

Tips from KCL Musculoskeletal (MSK) Expert Patients:
The group is involved with all areas of departmental research, teaching and health service improvement. In addition to this, the group helps shape a series of Patient Education Evenings which are a collaboration between academics, patients and clinic staff, and the topics are suggested by patients, for more information about these evenings please click here.

Carol and Kate have been contributing to research studies at KCL for several years through the MSK Expert Patients Group and shared with me what they find helpful for patients when entering into a PPI project. To see more from the KCL MSK Expert Patients check out their blog here.

Carol’s Top Tips for Researchers for Involving patients:
1. My involvement firstly depends on what I think I can usefully contribute (I am not good with figures and collating data). So it is useful for researchers to have some knowledge of the folk they would like to involve (clinic staff can help here) or maybe a short questionnaire to find out their skills or interests without being intrusive (basic tick box usually works).

2. It’s essential to provide comprehensive information on what is involved, time required and travel requirements – both for health reasons and general scheduling. Vagueness puts me off.

3. Keep everyone informed of what is happening on a regular basis. Long gaps make people lose interest!

4. For focus groups you need a strong Chair. Groups of folk with chronic conditions like to air their problems/issues and focus groups give the perfect opportunity. Researcher/Chair needs to keep everyone on track/time but give some ‘rant’ time at end of session!

5. With children, getting them to talk can be a problem – make sure you have a couple of confident kids to get the ball rolling and get some humour in there – and not too long. Short attention span normal!

6. Getting patients involved is historically difficult, partly I think because in the past one attended focus groups, sessions and then never heard the outcome of the research. Patients/public need to feel their contribution is valued. Let them see outcome.

Kate’s Top Tips for Researchers for Involving patients:
1. Be clear and fully explain about set project and what is expected of the patient representatives and what will be reciprocated. For example, it’s so important to communicate fully, especially in relation to deadlines etc.

2. It is essential that patient involvement is not seen or felt to be ‘tokenistic’.

3. It is important to keep the patient in the loop after they are no longer involved, so often we are not and it is disappointing and disconcerting as we have a genuine interest and have given up our time!

Dr Heidi Lempp is an Academic Medical Sociologist who set up the KCL MSK Expert Patient group suggests:

Do:

  • Inform patients/carers clearly in advance what you expect them to do.
  • Arrange an honorary/visiting contract with the Institution to raise patients/carers profile.
  • Discuss potential boundary issues, e.g. researchers/patients/carers.
  • Provide opportunities to meet clinic/research staff – facilitate acceptance and team building
  • Agree realistic deadlines for feedback – so plan ahead for major projects
  • Ensure patient/carer researchers know that contributions are appreciated
  • Recognise contributions and show appreciations through annual dinner or event.

Don’t:

  • Overwhelm patients/carers with work, start gradually with constructive positive feedback. Promise too much that you cannot deliver.
  • Exclude patients/carers from your activities, create ways to contribute.
  • Patronise patient/carer researchers – value their contributions.
  • Assume your colleagues will welcome these new roles – earn respect.

Further resources
Training courses for researchers: http://www.uclhospitals.brc.nihr.ac.uk/investigators/ppi-training

Training courses for PPIE members: http://www.guysandstthomasbrc.nihr.ac.uk/patients-public/for-patients-and-the-public/training-for-patients-and-members-of-the-public/
Generic guidance
https://www.hra.nhs.uk/planning-and-improving-research/best-practice/best-practice-in-public-involvement/top-tips-public-involvement-your-research-application/
• http://www.invo.org.uk/
• http://www.guysandstthomasbrc.nihr.ac.uk/researchers/patient-public-involvement-advice/ppi-toolkit/
• https://www.maudsleybrc.nihr.ac.uk/patients-public/support-for-researchers/
• https://www.rds-london.nihr.ac.uk/Patient-Public-Involvement.aspx (Including their Enabling Involvement Fund if applying for peer-reviewed funding e.g. NIHR grants)
https://www.rdslondon.nihr.ac.uk/RDSLondon/media/RDSContent/files/PDFs/Involving-Users-in-the-Research-Process.pdf

We hope you’ve enjoyed the latest issue of our healthily psyched blog. Please get in touch if you have any questions. In the meantime, we hope to leave you Healthily Psyched for part two of our PPIE post, which will be coming out soon. The post was written by Hema Chaplin and edited by Elaina Taylor.