Patient and Public Involvement in Research

This page provides a series of links and resources for conducting Patient and Public Involvement in Research. It is intended to be a dynamic resource, so if you have any suggestions for content, please contact Oliver, ocf26@cam.ac.uk

Contents

  1. Definitions
  2. Key resources
  3. Finding people to be involved
  4. Getting the most out of your lay advisors
  5. PPI and young people
  6. Evidence of PPI impact
  7. Writing in plain English
  8. Blogs and viewpoints
  9. Further info & contacts

1. Definitions

What is PPI?
Public involvement in research is when the research is carried out with or by members of the public rather than ‘to’, ‘about’, or ‘for’ them. PPI can be used throughout the life of the project from concept to dissemination:

  • involvement in identifying research priorities
  • suggesting ideas for specific research projects
  • as joint grant holders or co-applicants on a research project – or to review funding applications
  • as members of a project advisory or steering group
  • commenting and developing patient information leaflets or other research materials
  • to suggest recruitment methods and avenues (and advise on strategy if recruitment stalls)
  • undertaking interviews with research participants or assisting in focus groups
  • help plan dissemination of research to lay audience
  • co-author journal articles and lay media
  • present at conferences

PPI and secondary data science
PPI can still have a role to play when research does not involve new data collection. Setting research priorities and questions, and planning dissemination activities should still be amenable to involving lay members.

What PPI is not
PPI is distinct from engagement where we raise awareness of research, share knowledge and create a dialogue with the public. It is also not the same as research participation, when members of the public are recruited to take part in a study. Sometimes this line can be blurred, for example when running a focus group with participants about how an intervention might be carried out. In its pure form, however, members of the public would advise the research study without being study participants. Public involvement, engagement and participation are of course often linked and can complement each other.


2. Key resources

INVOLVE
INVOLVE – www.invo.org.uk is a national advisory group that supports greater public involvement in NHS, public health and social care research. The site is packed with information, including:

Involvement checklist
Questions to consider with regard to PPI recruitment, data security, payment and PPI induction. Download the checklist (pdf)


3. Finding people to be involved

The following sites and groups can be used find people to be involved in your research. You can also advertise through self-help groups, charities, in local libraries, online bulletin boards etc.

People in Research – www.peopleinresearch.org
Advertise opportunities for people to be involved in your research. Follow them on Twitter @People_Research

The MRC Public Panel
The panel exists:

  • To provide advice and guidance to the MRC on activities in which a public or patient perspective could add value.
  • To ensure the MRC understands and responds to the public’s interests, needs and concerns about research where appropriate.
  • To help support an environment where public and patient involvement is actively sought in MRC decision making

Currently the panel appear to be advising mostly at a national level. However, the MRC have indicated that it is possible to approach the panel to identify people to advise on local projects. Contact publicpanel@headoffice.mrc.ac.uk

Groups for PPI support in the East of Englandwww.rds-eoe.nihr.ac.uk/public-involvement/ppi-support-groups

The East of England region has several groups composed of members of the public and patients with different conditions who are brought together for the purposes of supporting research, and who have often had some basic research training, usually specifically aimed at service users. It is possible to send proposals or and other project documentation to these groups for review, and invite members of these groups to be part of your project steering committee.

Cambridge University Hospitals Patient and Public Involvement Panelwww.cuh.org.uk/research-and-development/for-public/patient-and-public-involvement-panel. Contact : ppi@addenbrookes.nhs.uk

Healthwatch – national network to promote patient voice
Healthwatch England is the independent consumer champion for health and social care in England. Working with a network of 152 local Healthwatch, they ensure that the voices of consumers and those who use services reach the ears of the decision makers. They are there for members of the public who wish to be involved in discussions and decisions about local health and social care services and may have connections with patient and public groups that you wish to contact.


4. Getting the most out of your lay advisers

  • Check they are right for the role – you can talk to potential candidates to make sure they have the right interests, skills and motivation for being involved
    Define a clear role and expectations
  • Check that they are capable of delivering what you need – and provide training if necessary. (See below)
  • See what other skills they have which you may benefit from (e.g. REC member, funding member, writer, economist)
  • It can be hard for lay members to ‘parachute’ into research projects since they are not involved on a day to day basis. Keep them informed and ensure they feel part of the project: send updates and assign a member of the team to be a primary point of contact. You may want to brief them personally ahead of meetings to bring them up to speed and answer any questions that they may have.
  • Don’t forget that you as a researcher get paid for your time – lay advisers give their time to your project and it is often appropriate that they should be recompensed. Budget appropriately for their involvement – see the INVOLVE PPI cost calculator. If necessary be creative, offer vouchers or other benefits. Check with finance department to avoid pitfalls in payment

Training available for lay advisers

CEDAR International Strategic Advisory Group member Jennifer Bostock delivers different types of training for public members. Workshops include:

  • PPI for new members: introduction to research. What can you bring? What are the benefits for you? What are the benefits for the research/er?
  • Research reviewing for PPI advisers. A practical session showing new advisers how to review research – from funding applications, to methodology to dissemination of research results.
  • Ethical reviewing for PPI advisers. A practical session showing advisers s how to ethically review research using diverse and topical studies and exploring the ethical frameworks that underpin the reviewing process.
  • Reviewing interview skills for PPI advisers. A practical session exploring the role of advisers as interviewers in research.  Role play includes interviewing researchers (as a funding panel member); and interviewing researchers (as a REC member).
  • PPI advisers as researchers. Exploring the ways in which advisers may become more involved in the research methodology as participant recruiters, co-authors, and qualitative interviewers – using a range of case studies drawn from research pertinent to the audience.

Please contact Oliver for more details about accessing this training.


5. PPI and young people

INVOLVE
A guide to actively involving young people in research www.invo.org.uk/posttypepublication/a-guide-to-actively-involving-young-people-in-research

ACTIVE Addenbrookes panel
This is a panel of young patients and former patients who can act as an advisory and PPI groups for your research with young people. Contact Kirsty Lothian, Children’s Services kirsty.lothian@addenbrookes.nhs.uk

ALPHA at DECIPHer
CEDAR’s partner centre DECIPHer in South Wales and Bristol runs ALPHA (Advice Leading to Public Health Advancement). It is an advisory group of young people aged 14-19 who live in the South Wales or Bristol areas. Young people learn through fun workshops about public health and research, so they can meaningfully advise researchers.

For external researchers to work with ALPHA, the study must be adopted/affiliated with DECIPHer, to check it is linked to their priorities. Once adopted/affiliated researches can work with ALPHA for one session free in the bid development stage with the proviso that any further work with ALPHA is funded into the study.

ALPHA meetings book up fast, often several months in advance. For more information, contact:

Hayley Reed
Involving Young People Research Officer, DECIPHer
ReedHM@cardiff.ac.uk
+44 (0)29 2087 9053 / +44 (0)788 151 4874


6. Evidence of PPI impact

Public Involvement in Health Research – Sheffield University
A research programme on the topic of public involvement in health and social research, including a number of published papers on the impact of PPI www.shef.ac.uk/scharr/sections/ph/research/public_involvement


7. Writing in plain English.

Research funding applications frequently require a plain English summary. NIHR has developed guidance on producing a good plain English summary. Full details at www.invo.org.uk/makeitclear


8. Blogs and viewpoints


9. Further info and contacts

If you would like to discuss your PPI work you can talk to: