Frequently Asked Questions (FAQs)

• What is public involvement in research?

It means research is done with or by patients and the public, not to, about or for them. Public involvement means working collaboratively with researchers and sharing decision making in the research process.

• Is public involvement the same as taking part in a study?

No. Involvement means helping shape research. Participation means taking part in a trial or study.

• Why is public involvement important?

It makes research more relevant, ethical, and useful to patients and the public.

• Who can get involved?

Anyone – patients, carers, service users, or members of the public. You can take part as a “healthy volunteer” even if you don’t have a health condition,

• Do I need research experience?

No. Your lived experience and perspective are what matter most.

• How can I get involved?

OH BRC – Join our PPI Contributor Group or email PPI.OHBRC@oxfordhealth.nhs.uk

MH-TRC Mission – email the team: mhm.ppie@psych.ox.ac.uk

• What roles can I take on?

You can help design studies, review documents, join advisory groups, or co-author research.

• Can I help choose research topics?

Yes. You can help identify priorities that matter to patients and the public.

• Can I be involved in more than one project?

Yes. Many contributors work across multiple studies.

• Is there training available?

Yes. We offer support and training to help you feel confident.

• Will I be paid?

You may be offered payment or expenses for your time and contributions.

Payments for involvement are often an important part of demonstrating the value of including lived experience and is an expected part of health and social care funding. Most involvement is not considered employment.

Each of the MH-TRC Mission workstreams and the two demonstrator sites are responsible for managing and processing involvement payments. The MH -TRC Mission will not deduct tax and National Insurance contributions before making involvement payments.

Individuals receiving payment for PPIEP activity are responsible for declaring their earnings to HMRC for tax purposes.

If you receive benefits, please check how receiving payments for involvement may affect these.

The NIHR has produced this guide. Usually, we offer payment through bank transfer, which can take up to six weeks.

• Do I need to commit a lot of time?

No. You can choose how much time you give, from one-off tasks to ongoing roles.

• Can I contribute remotely?

Yes. Many opportunities are online or hybrid.

• Will my personal data be safe?

Yes. Your data is protected under NHS and GDPR regulations.

• Can I stop being involved at any time?

Absolutely. You can opt out whenever you wish.

• Will my input really make a difference?

Yes. Your views help shape better, more inclusive research.

• How will I know what happens with the research? 

You may be informed about study progress and outcomes. If you would like more information about the results of the study, contact the study team. You should be able to find contact details on your Patient Information Sheet

• Can I help share research findings?

Yes. You are welcome to share links to study publications. You may also be asked to help make results accessible and understandable by writing Plain English summaries.

• What if I have feedback or concerns?

You can contact the PPI team anytime to share your thoughts.

• Can I help improve how involvement works?

Yes. Your feedback helps us improve our processes.

• What is the MH-TRC Mission?

Mental Health Translational Research Collaboration Mission

• How does PPIEP work within the MH-TRC Mission?

Five national workstreams (Mood Disorders, Early Psychosis, Children and Young People, Capacity Development, Data and Digital), and two demonstrator sites (M-RIC and MHM MTC) which you can be involved in depending on your interests. There are lots of different ways to get involved. You can share your thoughts and views on a variety of research ideas and plans such as co-designing patient information leaflets, co-designing research materials, commenting on questionnaires, identifying topics and priorities for research, and helping to promote research in the wider community by taking part in events.

• Who can be involved in the PPIEP/lived experience network?

We are looking for people who have direct or indirect lived experience of mental health. This can include your own experience of mental health, experience of living with, or caring for someone with a mental health condition. This can include your own lived experience, carer, family, friend etc.

• Do I need to know about how research works/previous academic experience?

You do not need to know about how research works. You will be supported as you go along and join other network members. You bring knowledge as a patient, carer or family member, or from using mental health services which is unique.

• Who are the researchers and what do they do?

Researchers work on a wide range of projects surrounding mental health research across both OH BRC and MH-TRC Mission. Researchers can be clinicians, professors, students, nurses and other professional titles.

• Will any personal details I reveal be kept confidential?

Yes. If you decide to join lived experience networks or PPIEP groups, any data that is collected will be held locally.  It will be stored safely and securely in line with Data Protection Law. We will delete any personal information about you on request.

• Will there be any support if I become upset or anxious?

Your wellbeing is a priority. Our researchers are well trained and experienced in providing support to people who take part in research. There are policies and procedures in place to support you if you become upset or anxious.