These are the words from the people who help design, review and take part in health research here in the Wessex region. It’s commonly called Public Involvement or sometimes PPI, but it basically comes down to involving people in research that makes a difference in our community. People become involved for several and varied reasons; as a carer, someone with a health condition or as someone with an interest – what’s important is that they make a difference and we couldn’t be without them.
Anya: “As a patient myself, I wanted research to be aligned with what matters to patients, but with my wider experiences of patient leadership I felt that this was an opportunity to really help shape a programme from an early stage to ensure effective and meaningful engagement is part of everything they do.”
How do you think your involvement helps? “It ensures that conversations are person-centred and rooted in what matters to patients and carers.”
Sally’s view: “Several members of my close family (including me) have long term health conditions which require self management and I also have two recent experiences of end of life care. As a user of services myself, and as a carer and relative, I am interested in ways of improving the patient experience and providing the best possible care in challenging circumstances, and especially when the end of life approaches.”
“Patients, relatives and carers often come into contact with health services when they are most vulnerable. Public contributors ensure that any research and subsequent implementation does not lose sight of this and that any changes have maximum benefit for patients and their families.”
Karen Postle got involved by meeting a member of our research staff on a bus, who she described as very persuasive. Karen said: “I have a long-standing interest in involving the public in research because I think we have a lot to offer as ‘experts by experience’. I used to work for INVOLVE so know how important it was for people to be involved and I’ve used health services a lot over the years. ”
“The work can be very interesting but the amount of time you’ll be needed (and the) nature of your involvement depends a lot on which (research) theme you work with.”
Sandy Ciccognani is a working mum and regularly makes the journey from her home on the Isle of Wight to the mainland to support the work of CLAHRC Wessex.
She became involved because she wanted a new challenge and to represent her community: “In some research, people may be more likely to give honest answers to another member of the public rather than trying to give, what they consider to be the correct answer.”
“In some ways I think it also helps researchers to be closer to the patients they are researching and reminds them that the subjects of their research are real people with feelings, full lives, etc..”
So what advice would our public researchers give to anyone looking to learn more about health research. Cynthia Russell has been working with our ageing and dementia research teams:
“Your voice needs to be heard in order to improve the healthcare provision not only of your loved ones, but to enhance patients and carer perspectives of health research. This will lead to a better service, a more empathetic service and enhance respect, leading to a comprehensive partnership in research for the future.”
Mark Stafford-Watson is our lead contributor and heads up the Patient and Public Involvement strategy Group called WISeRD. His background is not academic but he recently won recognition from Health Services Research UK for his work with researchers.
“It’s important that we make sure the right research is being done, and that that research is being done right.”
“My advice to anyone is to get involved, go for it. We can bring so much to our community and you never know where it will lead you to.”
If you are interested in being involved in health research email us
or call us on 023 8059 7983