Expert Interview: Patients as active decision-makers

Q&A with Ania Henley, Patient and Public Involvement (PPI) Adviser at Imperial College, an EIT Health UK-Ireland partner

Ania Henley (pictured), an expert at UK-Ireland EIT Health Partner Imperial College, shares thoughts on Patient Public Involvement and Patient Public Engagement in this interview with EIT Health.

Q: What are we talking about when we say “Patient and Public Involvement”?

A: Patient and public involvement (PPI) has existed in the UK for 20 years and is now mandatory in order for scientists to obtain public funding (and also for most private funding) for research. The National Institute for Health Research (NIHR) which funds public research in the UK uses the following definitions: “Public involvement” is when the public is actively involved in the activities, organisation and governance of specific research projects or research in general. “Public engagement” means providing and disseminating information and knowledge about research to the public; discussing and consulting the public. Not to be confused with “Participation in research” as a subject, for example in a clinical trial. The “public” includes patients, carers, organisations and all people who use health services; basically, the end users.

Q: Can you tell us a little about how you got into PPI?

A: Well, I spent 20 years working for Imperial College, London creating systems which enabled the collection of data for research, audits, care pathways etc. I also co-ordinated clinical trials for the Orthopaedic and Cancer departments. It was while I was running these studies that I was asked if I would participate in a trial. My family suffered from various cancers and during this cancer trial, I would have regular scans and blood tests.

Q: Is this what motivated you to get involved in research as a PPI Adviser?

A: Yes, basically, and I am probably here to tell the story because I took part! Like so many people, I have been and will surely be a patient in the future, and it is thanks to research that many of us are still here. I have cared for members of my family and have learnt a lot in the process and my experience can be beneficial to research. Research is paramount to ensure we save lives, so this is my little contribution.

Q: Why do you think researchers/innovators should bother with PPI?

A: There are several arguments in favour of patient and public involvement in research: the well-known patient motto, “nothing about us without us” encapsulates the ethical argument that public involvement is seen as a right when a stakeholder group might be affected by the topic or as part of good governance to ensure transparency of decisions and accountability when using public funds. Also, patients can facilitate the translation of research from “bench to bedside” by utilising their lived experience. Involving service users and the public in the research process may lead to research that better reflects the public’s needs and priorities. By making use of their knowledge, expertise and networks, researchers/innovators can provide more relevant innovations for the end user.

Q: And what PPI are you involved in?

A: I am an adviser on the National Institute of Health Research (NIHR) Biomedical Research Centre (BRC) Patient and Public Panel at Imperial College for the last few years now. The panel’s remit is to influence PPI at the strategic and governance level of research at Imperial. I also sit on the Medical Educational Ethics Committee (MEEC) at Imperial College; it is a great way to see what the medical students are investigating! I am also the UK&IR representative on the Ethics Legal Social Issues (ELSI) board for EIT Health as the Lay Adviser since it was established in 2016. My mission here is to contribute to the motto NOTHING ABOUT US WITHOUT US!

Q: So how can start-ups/Innovators learn more about PPI/E?

To learn how PPI/E can be undertaken throughout the research cycle and how important and useful involvement is to innovation in health and research follow this page for updates on future events with me. You can also follow me on my monthly PPI/E post it note from April 2018 on the EIT Health UK-Ireland webpage.

Interview conducted by Laura Vicinanza.