Patient and public involvement (PPI) means doing research with or by patients and members of the public, rather than to, about or for patients and members of the public.
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. Including a wide variety of perspectives from patients and members of the public on the design and running of research fills the gaps in understanding and helps improve the quality and relevance of research.
Being involved in PPI is not the same as taking part in a research project as a participant. The table below outlines the differences:
| Participant in a research project |
Patient and Public Involvement |
- Being interviewed
- Taking part in a focus group
- Completing a survey
- Taking part in a clinical trial of a new treatment
|
- Helping to decide on the interview questions
- Helping to design surveys
- Discussing how to encourage people to take part in studies
- Taking part in group discussions
- Reading and commenting on study documents e.g. Patient letters, patient information sheet
|
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If you are interested in getting involved in PPI in our cancer research, this is what the process looks like:
- Sign up to our mailing list, here*: (by asking for information on your age, gender, ethnicity etc, it allows us to understand who we are involving, and who we are not)
- You are added to the CCSPED PPI Pool (database)
- When new PPI opportunities are available, we will email you with the details of the study, and what the PPI activity is
- If you are interested, you can reply to the email to express your interest
- You will be contacted by the researcher to let you know whether you have been selected to take part
- You work with the researcher to influence their research
- You are paid for your time
Only staff members that have a legitimate need for their research at CCSPED will have direct access to your information. Your contact details will not be shared with third parties, and will be stored securely and confidentially in line with GDPR & the Data Protection Act 2018
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. Information about the need to join meetings and their locations will be provided at the time of invitation. If any travel is required, you will be reimbursed.
How much time is needed?
The time commitment 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 in something, we will share more information about how much time is needed. You can decide at that time whether you have the time to get involved. Choosing not to take part will not affect whether you are invited to future relevant 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 £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 our PPI coordinator via email: ccsped-ppi@qmul.ac.uk
Will my details be stored confidentially?
Your personal details will be stored in line with GDPR & 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.
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. We can also offer learning, development and training opportunities if desired. We encourage any member of the public who is interested in our work and can spare some time to get involved. We would like to involve people with and without experience of cancer too.
We are especially interested in hearing from:
- Men
- Younger people
- People from ethnic minority backgrounds
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