Patients, carers, and members of the public can get involved in our world-leading research in many ways. Involving patients and carers in our research helps us to identify research questions that are most relevant. It also makes sure that the needs of patients, carers and anyone else affected by the research, are central throughout the research process so that we answer these questions in the right way.
What is Patient and Public Involvement?
Patient and public involvement (PPI) is about people sharing their lived experience as a patient, carer, or member of the public to make sure research is based on reality, is relevant, and addresses patient needs and priorities.
Who can get involved in our research?
Medical research done well is a joint effort involving a broad range of members of the public and other interested groups. The School of Medicine welcomes all contributions of patients, carers, and the public in our research with different levels of involvement depending on experience, interests, and availability.
Why should I get involved in research?
Being involved in research can have many benefits for you and those doing the research.
Researchers may not have personal experience with what they are researching. This means that they may need help with the best way to design and carry out research around patient needs and public interests. Your contribution will help make sure that research does this.
Our PPI members speak about why they choose to be involved in research:
I'm helping make medical research better. I am doing something useful with my time. I am using a lot of the skills I have. I meet lots of interesting people. I feel valued. - Stevie
After my stroke I felt that I had been treated well and I wanted to contribute. My only criticism of my treatment was that the patients, like me, were not involved in discussions of the treatment.
I have lived experience of the condition, stroke, and other experience having worked over 30 years in the pharmaceutical industry. - Fred
I had to retire from my job due to ill health and the pressure of caring responsibilities. I didn't realise how useful my life experiences could be in helping with health research. Being able to contribute has helped me to cope with my mental health difficulties and improved my wellbeing. It's great to feel I can still contribute and make a difference simply by using my 'lived experiences'. - Colleen
How can I get involved?
Whether you are a patient, carer, advocate, or simply interested in learning more about our medical research, there are many ways you can get involved. You don’t need any special skills or qualifications. You can bring your insights based on your own experience of health or healthcare to help shape research that is relevant and built around patient needs.
Examples of different involvement activities include being in partnership with the researchers in one or more steps of the research from:
- prioritising research topics and questions
- joining a study team
- reviewing documents related to studies to make sure they are easy to understand
- helping to make sure the study results reach everyone who needs them
- taking part in group discussion to share your experiences, help design and complete surveys
- being part of the research advisory or steering group
- getting involved in making sense of the research results or
- contributing to sharing the results with the public and other researchers.
Read our PPI members’ stories on some of their involvement with our medical research:
Expand to read Claire's story
I’m Claire Klauza, I’m married to Pete and have a wonderful, brown Labrador assistance dog, Jessi!
I have worked in patient and public involvement (PPI) roles since 2005 and I was an inaugural member of the Hearing theme in the Nottingham Biomedical Research Centre Steering Group when it was formed to support Dr Adele Horobin in 2013. I have supported many researchers with their varying projects into audiology conditions. I previously worked in mental health research from 2011-2014 and I have first hand experience of supporting someone with enduring mental health concerns.
I worked for six years in the BBC East Midlands Today newsroom and completed my career in academia until I medically retired in 2011: both careers involved me writing presentations, albeit in different ways and for different audiences, and presenting them.
More recently, I have supported Kate Frost, Head of Patient and Public Involvement in Research at Nottingham University Hospital (NUH) during the pandemic, by being an active and integral part of her ‘COVID PPI Taskforce in Research’, for which we were nominated for a Team NUH award by the CEO of NUH Tracey Taylor.
I have two Law degrees and an MA in Broadcast Journalism.
Expand to read Colleen's story
I’m Colleen Ewart and I love being part of patient and public involvement (PPI) in health research both locally and nationally. As a carer for my 89 year old Mum and son who has a rare type of dwarfism; I have gathered a lot of knowledge about many different health conditions.
I started my journey in PPI with palliative/end of life research at the Cicely Saunders Institute Kings College Hospital, London after my Dad died at home (as he wished). Being able to use this episode to help other patients and carers in similar circumstances has been a very powerful experience. I moved onto working with the Hearing theme in the Nottingham Biomedical Research Centre here in Nottingham. As a hearing aid user it's good to be able to share what it's like to struggle with being able to hear clearly.
I’m currently the PPI lead on a mental health study for children and adolescents. We are trialling a questionnaire to see if the extra information gathered helps medical teams to target treatment more effectively.
I really appreciate the wide range of opportunities that are available from spending an hour in a focus group to nearly four years helping with a mental health research project. You can do as little or as much as your time and energy will allow. It's a great way to give something back to the NHS as well as meeting new people and building new skills.
Expand to read Fred's story
After my stroke I spent seven weeks in hospital. In order to pay back for the care I had received I volunteered to undertake Patient and Public Involvement (PPI) work for stroke and when Ossie Newell left the group, I became joint lay chair of the Nottingham Stroke Research Partners Group. I work closely with the Stroke Association and have given talks and presentations on their behalf including conference presentations. I run an art club for stroke survivors. I was soon invited, and accepted, to join the hearing, mental health and technology teams and the Applied Research Collaboration PPI teams. The work is interesting, and stimulating and I believe makes a difference.
Expand to read Stevie's story
Small projects that stand out, such as the one where the researcher needed to make an unpalatable drink easier to swallow. We suggested strawberry flavour, and it worked.... And the time when a researcher was struggling to recruit patients to his trial. We helped him reword the advert, and he got lots more recruits. Once, researchers wanted to do tests on patients, once a week for six weeks. They wanted them to come to the hospital just to take blood. We had to explain that it’s really awkward for people who go to work, or who have childcare, or have to travel a long way. So they made sure that people could get their blood taken at their local GP practice. I've done a lot of PPI work, but it's the small things that give me most satisfaction.
The School of Medicine and our partners offer numerous opportunities for patients, carers, and the public to take part in many different types of medical research. Many of which can be found here:
Getting in touch
We want to hear from you, whether you are a patient, carer or just interested in health and medical research. With your involvement, we can carry out research that is relevant and designed around patient needs. Together, we can help research improve people’s health and wellbeing. Join us to make a difference through research!
Dr Adele Horobin
Senior Patient and Public Involvement and Engagement Manager
Please contact Dr Adele Horobin - Senior Patient and Public Involvement and Engagement Manager to find out more about opportunities to get involved.
Read our PPI newsletters
The School of Medicine Patient and Public Involvement (PPI) newsletters are designed to highlight PPI groups and activities and sharing news about PPI.