Why did you decide to be a member of the CAPC PPI&E Steering Group?

I was Research Administration lead at Streamside Surgery, Thornbury, and thoroughly enjoyed being involved with many research groups at Bristol University. I left there in April 2019 to focus on family, but decided to get involved as a PPI contributor for the CAPC PPI&E Steering Group, to keep up my interest in research alongside my new commitment as a granny.

What does good PPI&E mean to you?

It means the public having some input into research projects and becoming involved with the academics.

What experience do you have?

I have been involved with numerous research projects: METRIC, GPs in A&E, End of Life and Comparator. I have also been fortunate enough to join a RTI-RAND Co-design workshop at Manchester University - a collaboration workshop between Bristol, Liverpool and Manchester Universities. I have met some very interesting people whilst attending these workshops.

Why did you decide to be a member of the CAPC PPI&E Steering Group?

My family has experienced chronic health problems and I think that the voices of patients, carers and the wider community should be heard by those designing and undertaking health research. 

What does good PPI&E mean to you?

Ordinary people from diverse backgrounds are given the opportunity to influence the questions addressed in health research and the way research is designed, conducted and presented to the public. 

What experience do you have?

I have a background in life sciences and worked in NHS and research laboratories for over 20 years. More recently I have worked in community development and have experience in working with small groups.

Why did you decide to be a member of the CAPC PPI&E Steering Group?
I worked in nursing and counselling before coming into research full time at CAPC three years ago. I want to contribute to improving the way that healthcare is provided so that it empowers people to achieve the health outcomes they want.

What does good PPI&E mean to you?
I would love to see ideas for new research coming directly from patients and the public and them being involved much more commonly as research partners and collaborators on research projects right from the outset.

What experience do you have?
At the moment, I am facilitating a PPI&E group for the trial I work on, which is about improving the care of people with multiple long-term conditions in GP practices. It is a wonderful, lively and diverse group, all of whom are committed to contributing to the project. I enjoy it very much!

Why did you decide to be a member of the CAPC PPI&E Steering Group?
Primary care is an area that is relevant to us all and I wanted to be able to use my personal experiences to influence the research that comes up in this area so that it takes into account a range of views. I also feel that I bring the perspective of someone in their late 20s/early 30s, from a Black and Minority Ethnic background, which are groups that are not always well-represented in PPI&E.

What does good PPI&E mean to you?
Good PPI&E involves creating a meaningful dialogue between the researchers and the public/patients, where both are equally valued for the contributions that they make and equally able to impact the decision-making process. It is about respect, information exchange, and applying these contributions to every stage of the research cycle.

What experience do you have?
My background, both professionally and on a more personal level, is within mental health. I studied psychology and have worked with the local CCG (Clinical Commissioning Group) in the past to assess service providers. Living with long-term health conditions has given me great insight into what wellbeing and recovery mean, especially from a non-academic perspective. I have also volunteered for 15 non-profit organisations/charities in the last 14 years so have come into contact with people from all walks of life, which further informs my views.

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Why did you decide to be a member of the CAPC PPI&E Steering Group?
I have had a long-standing interest in PPI in health and social care research, from the perspective of primary care patient, interested member of the public and as a one-time academic researcher myself.

What does good PPI&E mean to you?
Embedding the lay perspective and patient and public priorities in the research cycle and process from the outset. Good PPI&E involves an active reciprocal expertise and information exchange between professionals and lay contributors.

What experience do you have?
After a career in local government spanning thirty years, I changed tack completely in 2005 and left to pursue my academic interests in experimental cognitive psychology through a Master's and PhD research. I am now a research and evaluation consultant, with a particular interest in quality improvement, mainly within the fields of mental health and community health services.

Why did you decide to be a member of the CAPC PPI&E Steering Group?

I felt that I had a lot of relevant experiences to contribute to discussions about how to get different people involved in PPI. I was quite concerned when I first started doing PPI that almost all the contributors were very similar to those carrying out the research and that this would not give a true and full picture of what patients and the public thought. I have had a wide range of experiences in my life and career ensuring that I have connections with, and knowledge of, a wide range of people and organisations in Bristol who could be involved in PPI, improving the results. While on the Steering Group a focus for me has been improving diversity. There are still improvements to be made but I have seen real progress since the two coordinators came into post.

What does good PPI&E mean to you?

For me good PPI has to be real. It needs to include a range of people, some who have relevant experience and others who do not. Things have to be put in place to ensure that PPI sessions are accessible for everyone and that everyone can contribute if they wish to. The researchers need to take the PPI contributors seriously and not patronise them. Contributors must be able to influence the direction of the research, results and dissemination of results. Ideally PPI contributors will be part of the research team and co-produce the research.

What experience to you have?

I have been involved in a variety of studies over the last five years including: poly-pharmacy, end of life and palliative care, support for survivors of domestic abuse, a tool for informing GPs of your issues before an appointment (COAC), diabetes (BOX), ACCESS, paramedics and end of life planning, monitoring tests for long-term conditions and others. I have been on the CAPC PPI&E Steering Group for 4 years. I have taken part in group discussions, as well as on local advisory or steering groups, on a national steering group and recently in co-production.

Why did you decide to be a member of the CAPC PPI&E Steering Group?

My research over the past 30 years has greatly benefited from patient and public involvement and I was keen to extend and deepen PPI in all research groups in our Centre.

What does good PPI&E mean to you?

Involvement ranging from choice of research questions, design of studies, development of funding applications, conducting the research, interpreting the findings and publicising the results in the world.

What experience do you have?

I have worked closely with PPI groups connected to my domestic violence and heart disease studies.