PPI in research
National Cardiac Surgery Clinical Trials Initiative
Quote from PPI member: “Don't think your question is unimportant as yours could be the key that unlocks the door”.
Daily, research is being designed and carried out with the contribution of people like you. If you think that you don’t know enough to help, think again. Do you have opinions, are you able to express an opinion, then there are senior people in the NHS wanting you to get in touch with them.
Here’s an example, under the leadership of Professor Gavin Murphy, Consultant Cardiac Surgeon at Glenfield Hospital, Leicester, there are teams of people working on answers to critical questions regarding heart surgery, and in every single team there are members of the public contributing to that conversation. We do it voluntarily. We don’t get paid, but we have the satisfaction that we are making a difference.
Commenting on the part played by PPI, Professor Murphy said: “By making the PPI part of our research strategy we will ensure that our research best reflects the needs and concerns of the community which it aims to help. We would be unable to deliver our current research without the commitment and time kindly given by patients and members of the public, which is directly making a difference to both patient experience and research success to an unprecedented extent.”
Clinicians leading the National Cardiac Surgery Clinical Trials Initiative Clinical Study Groups comments
“Patient-led research is essential to ensuring that evidence-based medicine is valuable to those it impacts. Patients have been instrumental in designing and developing the Infection Prevention program of work (NIHR PDG 202620). They have provided a different perspective to the work and facilitated and engaged a wider patient population. This has not only ensured that the research is clinically relevant but also that it encompasses the wishes of patients and the public, some of which may otherwise have been overlooked by clinicians and/or academics." Luke Rogers/Ricky Vaja, Clinical Leads, CSG7 Infection Prevention Group.
“The key issue with minimally invasive surgery is that it’s all about patients preferences. Patients are constantly having to make a trade-off between tried and tested invasive incisions like a sternotomy or ‘keyhole’ techniques which are relatively new. CSG 4 is all about doing the research to give patients as much good quality evidence as possible to help them make the right choices for their individual situations. The role of PPI when designing and conducting this type of research is invaluable. An example is our recent work to really understand what influences a patient when they have to choose one technique over another. This trial called ‘A Discreet Choice Experiment’, would not be possible without the input of our PPI Group.” Enoch Akowuah, Clinical Lead, CSG 4 Minimally Invasive, and Heart Valve Surgery group.
Our patient member's comments
“As an ex heart surgery patient I like to give back using my experience. Like to keep up to date and influence future for heart patients. As a physicist I am interested in all things science”, Alan: patient member of CSG 1 Long Term Outcomes and Quality of Life and CSG 2 Prehabilitation groups.
“I had a heart transplant back in 2013 for which I am eternally grateful. I wanted to give something back so I became involved in volunteer patient groups on various projects associated with cardiology and data management. I also find the scientific discussions in these projects extremely rewarding. Lastly the interaction with other patients is just great even on Zoom!” Bob; patient member of CSG 5 Organ Protection group.
“I got into cardiovascular research as this was an area of interest as my auntie had 2 open heart bypass surgeries. The first surgery had complications and unfortunately was unsuccessful. My auntie then contacted sepsis and was in hospital for a long time. Once the infections had subsided she went in for the second surgery which was a success. She still suffers with pain and has had to rethink her lifestyle. I joined the cardiac surgery PPI initiative because I wanted to be able to gain information on patient’s personal stories, and the clinical trial that are being put forward. I wanted to be involved in contributing to clinical trials that could help patients in the future. I am also in my final year of PhD in cardiovascular sciences and working with the PPI initiative has given me a better insight on the clinical trials process as well as surgery itself. This I am very grateful for”. Geraldine; patient member of CSG 1 Long Term Outcomes and Quality of Life group.
“I am in the cardiac PPI group because I am a cardiac patient and wish to help enhance and inform advancements and victories in research in any way, for all patients. I enjoy being in the /in such a group, as one gets to know other patients and share stories. I am very grateful for the opportunity.” Rachel; patient member of CSG 4 Minimally Invasive and Heart Valve Surgery group.
“Involving patients and caregivers in research ensures their voice, their experiences and their expertise are heard. After all, it is the patient who lives with the condition 24/7 and knows more than anyone the impact the disease and potential treatment options have on their quality of life. I always welcome when asked to represent patients so their voices can be heard – it truly demonstrates that the research team are concerned and want to improve patient outcomes through their work and research.” Trudie; patient member of CSG 4 Minimally Invasive and Heart Valve Surgery group.
Public research money rarely changes hands unless the public have given an opinion as to whether they think it will have a real benefit, its value for money, and if they think it’s likely to be achievable. But the well of public opinion is small. Researchers sometimes struggle to find enough public opinion to get the money they need. If research is delayed because public involvement isn’t good enough, then we all lose out. So get involved. Your opinion matters, you shape the future of research.
What’s in it for you? You’ll gain new skills, confidence, knowledge and the satisfaction from passing on what you know to people really keen to learn what you know. See further information on PPI in research.
See further information on the National Cardiac Surgery Clinical Trials Initiative.
Contact the research team, Sue Page or Suraj Pathak.