What is Patient and Public Involvement and why is it important?
Patient and public involvement (PPI) means research that is done with or by patients and members of the public, rather than to, about or for patients and members of the public.
PPI involves patients and members of the public contributing their ideas to shape how research is planned and carried out. This is different from research participation, where individuals take part in a study or clinical trial (e.g. by completing a questionnaire, participating in an interview, or enrolling as a clinical trial participant).
PPI is an essential part of health research as it makes sure that views and experiences of people who live or have lived with health conditions, and use health services are included in the design of research.
PPI can increase the quality and impact of research, as researchers may not have experience of living with a health condition or attending a health service. Your views can help researchers to see things differently, and think of ideas that they wouldn’t have on their own.
Researchers know about different health conditions, and how to treat them, but most will not have lived through them. The benefits of research may also be different for people with different backgrounds or lived experiences. Incorporating different perspectives from people of various backgrounds to shape research can make it it more relevant and impactful for patients and the public.
PPI contributors are a valuable part of research, and their time, effort, and experience will be compensated.
How to get involved in Patient and Public Involvement at WIPH
If you would like to contribute to PPI at the Wolfson Institute, please follow this link to sign up to the WIPH PPI Opportunities Newsletter.
Once signed up, you will receive a monthly email with new and exciting opportunities to get involved with our research. If a project interests you, contact the email listed under the advert before the closing date. Please note that not all opportunities may be open to everyone.
You are welcome to accept as many invitations as you have time and interest for. However, places are often limited. People may be chosen at random, based on specific characteristics or on a first-come first-served basis.
If you are currently claiming welfare benefits, you will need to notify their Jobcentre before you take part in PPI activities. Please ask the researcher for a signed letter to notify your Jobcentre of your plans to be involved in research.
Please note that if you receive over £1000 per year for taking part in PPI activities, you must declare these earnings to HMRC.
Where will the meetings take place?
Meetings and group discussions may be held virtually or in person. Some tasks won’t need you to join a meeting, for example reviewing and commenting on documents can be done via email or post. This information will be included in the newsletter. If any travel is required, you will be reimbursed.
How much time is needed?
The time needed will be different for each opportunity. It could be as little as a single one-hour group discussion, or it could be regular meetings over a few years. When you are invited to get involved, we will share more information about how much time is needed. You can decide then whether you have the time to get involved. Choosing not to take part will not affect whether you are invited to future opportunities.
Will I be compensated for my time?
You will be compensated for your time by bank transfer or in vouchers that you can spend at a large selection of shops. The amount will depend on the project, but you will generally receive around £25 per hour. Any travel required for a project will also be reimbursed.
What if I want to leave after agreeing to be involved?
Each opportunity is completely voluntary. You can take part for as long as you want to or are able to. Sharing your information is completely voluntary and you can ask to be removed from the database at any time by contacting us via email at involve-wiph@qmul.ac.uk.
Will my details be stored confidentially?
Your personal details will be stored in line with GDPR and the Data Protection Act securely on our database. We respect and value your confidentiality and access will be restricted to team members who have received information governance training and on a ‘need to know’ basis.
Who can get involved?
You do not need to know about how research works to get involved. No previous skills, knowledge or experience is required to support us with our research. We will provide you with all the information you need and support you along the way.
When you sign up, you will be sent a document with some more information, and links to courses and websites where you can learn more about PPI if you like.
We encourage anyone who is interested in our work and can spare some time to get involved.
Sign up to the newsletter here: WIPH PPI Opportunities Newsletter sign-up