Placing the patients and public at the centre of research

Patients and the public are, and should always be, placed at the centre of healthcare and research.

They bring a wealth of experience and provide valuable perspectives on the way that research is designed and delivered. 

As such, patient and public involvement (PPI) can improve the quality and relevance of researchers' work, helping them better understand and articulate the benefits their research can have on patients. 

In conjunction with Cancer Research UK, Imperial College London is offering a new free PPI training session. Whether a researcher is preparing a funding application, conducting research or planning their next project, the training session offers a fantastic opportunity to understand how to involve people affected by cancer in research in an impactful way.

Why involve members of the public in research?

NIHR INVOLVE, a national advisory group that supports active public involvement in NHS, public health and social care research, lays out several reasons why PPI/PPE can be an essential part of a research project:

• Improving the quality of the research (e.g making the research more accessible or appropriate).
• Providing a different perspective (e.g. the public might have personal knowledge or experiences of living with a health condition).
• Making the research more relevant (e.g identifying a wider set of research topics or ensuring research is focused on the public’s interests).

“No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.” Professor Dame Sally Davies Chief Medical Officer

Some research types are easier to involve patients than others. However, patient involvement has the potential to bring benefits to all areas of research.

As well as the practical benefits of helping to ensure research quality and relevance, the underlying reasons for involving members of the public in research are also informed by broader democratic principles of citizenship, accountability and transparency.

Several funding bodies, as well as research ethics committees, ask grant applicants about their plans for public involvement with an expectation that if they are not involving members of the public in the research then they need to have thought through why they have made this decision and explain the reasons.

How Imperial supports PPI

At Imperial, The Patient Experience Research Centre (PERC), a multidisciplinary group of clinicians, public health specialists and social scientists, works to promote active communication between patients, researchers and clinical staff to address real problems and improve the quality of healthcare and the impact of translational research.

PERC, in collaboration with the NIHR Imperial Biomedical Research Centre (BRC), is committed to broadening the scope of patient and public involvement activity in research, by building capacity and collaborating with other organisations locally and nationally, as well as demonstrating the value and impact of these activities through high quality, evidence-based work.

PERC offers a free to use Patient and Public Involvement (PPI) Resource Hub, that has been specifically developed for Imperial College researchers funded by the BRC, but the content is open and accessible to all.

In collaboration with the Imperial Clinical Trials Unit (ICTU), PERC has also developed ‘face to face’ public involvement training sessions suitable for both Imperial researchers and patients/members of the public. The training is split into five free sessions, with each running on a number dates throughout the Autumn term.

Other PPI resources

NIHR INVOLVE offers a number of PPI resources, both for researchers and the public/patients wishing to participate in PPI. This includes a free online training course, with specific modules to help researchers understand how to get PPI right first time, National Standards for Public Involvement and Starting Out Induction Pack explaining PPI.

CRUK do a lot of work supporting PPI, including producing a very helpful Patient Involvement Toolkit for researchers. In it, they lay out six stages to organising PPI:

• Choosing your patient involvement method
• Planning your patient involvement method
• Recruiting to your patient involvement activity
• Preparing patients for your patient involvement activity
• Delivering your patient involvement activity
• Final stages of your patient involvement

The RDS London Public Involvement Team also offers a pre-funding PPI grant, through NIHR INVOLVE. Their Enabling Involvement Fund aims to help researchers initiate PPI in the research process and present a more compelling case for their study when applying to research funding bodies. To find out more about the fund and the application process, please read their guidance notes.

If you have any questions about introducing PPI/E into your research, contact Imperial PERC.