The STAMINA PPI group
Public involvement in research is also referred to as Public and Patient Involvement (PPI).
The STAMINA PPI group was established in 2018 to bring lay voices and opinions to studies, collaborating with researchers to keep them grounded and in touch with patient and public perspectives.
About the group
What is public involvement in research
Become a member
About the group
The STAMINA Public and Patient Involvement (PPI) Group was originally developed to help shape the STAMINA research programme. The group has been established for more than 7 years and has included more than 30 men with prostate cancer treated by ADT from South Yorkshire (urban), North-East Derbyshire (rural) and North Somerset (rural), and 6 partners and carers.
Members
Chris Allen – Chair of STAMINA PPI Group
Patrick Naylor – Co-Applicant and Chair of PE Method PPI Group
Sybil Naylor
Ian Hague
Ken Bond
Denis Creaghan
Gordon Dabinett
Keith Gosling
Steve Pagden
Peter Scott
Patrick Yeardley
Chairs
Mr Chris Allen is the chair of the STAMINA PPI group.
Mr Patrick Naylor is a co-applicant on the PE-METHOD project and chair of the PE-METHOD PPI group.
They participate in regular research team meetings representing the PPI and patient voice, in addition to regular face to face PPI group meetings.
The PPI group have and will continue to be actively engaged in providing the patient perspective to ensure the research that Team STAMINA conducts remains relevant to the needs of patients, carers and family members.
Activities
Significant contributions relevant to current and previous projects include:
identification of research priorities
research design
developing patient-facing materials
assistance writing lay summaries
recommendations on future dissemination activity
support with continued PPI recruitment
recommendations on meeting frequency and format
What is public involvement in research?
Researchers and others use a variety of words to describe ways of interacting with the public. The terms involvement, engagement and participation are sometimes used interchangeably.
The NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients, carers and members of the public with researchers that influences and shapes research.
When using the term ‘public’ we include:
patients
potential patients
carers
people who use health and social care services
people from specific communities and from organisations that represent people who use services
people with lived experience of one or more health conditions, whether they’re current patients or not
How members of the public might get involved in research
Examples include:
as joint grant holders or co-applicants on a research project
identifying research priorities
as members of a project advisory or steering group
commenting on and developing patient information leaflets or other research materials
undertaking interviews with research participants
carrying out research as user and/or carer researchers
Become a member
To join the STAMINA PPI group, contact: sth.stamina@nhs.net
Who can join?
Currently our members are people with prostate cancer and their close friends, family or carers. We are extending our research to other cancers and will be looking for new people to join the group in the future.
You do not need any prior experience or knowledge of research, and basic training is provided.
Benefits to joining
Involvement in the PPI group offers a meaningful way to have a real impact on the quality of care and treatments, whether that is for yourself, somebody you care for, or other people living through a similar condition.
Many people choose to get involved to help improve services, give back to the scientific community, and ensure their own or their community's voice is heard in research processes. Some people have had difficult experiences and appreciate being able to do something positive with that experience.
In addition to making a difference, public involvement gives you an opportunity to connect with others facing similar situations, gain insight into the research process, and develop new skills.
Many find the experience rewarding, whether it’s through influencing positive change or gaining confidence and knowledge that can extend beyond research involvement.
Meetings and time commitments
Our group meets approximately once every 4 months and the meetings last about two hours including lunch.
Lunch is provided for free and travel costs are paid back to you.
We understand that you may not be able to attend all meetings due to other commitments and that is absolutely fine.
We usually meet mid-morning and start with tea or coffee and time for people to talk and settle in. We will then go over the topic of the meeting, this is often looking over study materials to make sure they are patient friendly, but it can be about anything to do with the study. We usually end with lunch.
Next steps to joining
If you are interested in joining the STAMINA PPI group, or would like to learn more, please email us at: