The ESHCRU II virtual PPI Panel (the Panel) exists to provide a patient and public perspective on any aspect of the Unit’s programme of work. Learn more…
The Panel is virtual, because members do not meet face-to-face. Requests may include the following:
- To raise emerging policy issues that require evidence.
- To propose potential research topics.
- To identify and frame research questions.
- To review study proposals.
- To identify implications of results.
- To help draft, or comment on, lay summaries for research reports.
- To advise on dissemination and impact of research findings.
- To provide feedback and comments on our website.
Further details are available in the Panel’s Terms of Reference
Case Study: Wendy Milborrow
“I am a lay member of the ESHCRU Advisory Group. I was asked to join because of my experience as a carer, supporting my husband who has dementia.” Read more…
“During my time as a member, I have attended regular Advisory Group meetings; contributed to specific projects within the programme of work; provided feedback on written information aimed at a lay audience; and contributed to the preparation of funding proposals for research projects.
My involvement in all this work has been interesting and enjoyable. Attendance at meetings was a bit daunting at first – until I realised that I was not expected to understand some of the very technical work that is carried out! I have always felt welcome and supported and that my opinions have been listened to and respected.
As a lay person, I feel that my main contribution to the work of ESHCRU has been to offer a view on how the issues being researched affect real people, from my perspective as a carer and service user. When relevant, I have been able to share some of my experiences in navigating the system, to highlight difficulties and gaps in support as I have found them and to comment on health and care priorities as I see them, which helps to guide the direction of the research.”
Response: Anne Mason
“Wendy made a fantastic contribution to our previous programme of work!” Here’s just one example. Read more…
“GPs are paid to provide an annual health check for their dementia patients. Going into hospital can be a frightening experience for someone with dementia, and can trigger a downward spiral in their health. So we wanted to know – is this annual health check helping to prevent unwanted and unplanned hospitalisations?
Wendy was part of a larger group who helped us think about why unplanned hospital admissions happen. She explained that if GPs can’t respond quickly enough when someone’s health starts to deteriorate, they won’t be able to prevent a hospital admission. So we added measures of access to GPs to our analyses to address this important issue. Wendy also pointed out that some carers will be better equipped than others in negotiating support from the health and care system. So we added measures to our models to capture factors that affect people’s ability to navigate the system. Wendy’s words made a real difference to our research.”
Our aim is to involve patients, carers and the public in a meaningful way by including them as members of all our Advisory Groups. We have 4 PPI members on our Programme Advisory Group and 3 PPI members on our Workstream Advisory Group.
The Groups oversee and advise on our programme of work. Public members offer a patient / public perspective and work with other members of the Group to:
- Identify and frame our research questions.
- Direct the focus of investigations to key issues of importance to service users and the public.
- Identify implications of results for patients, service users, carers and the public.
- Advise on how to disseminate the findings of our research.
- Propose potential research topics for our new programme.
We also have a virtual PPI Panel of whom we can ask questions of in a more responsive, informal way.
Our Public Involvement Strategy is currently under development and will be posted on this website in due course. Our task is to focus on where PPI would be of greatest value, and we should also be clear where we think it’s less relevant. Our aim is to think about how to involve people in designing research questions and in how we disseminate our findings to users and the public.
Involving patients, carers and members of the public in quantitative research brings both opportunities and challenges. Above all, it’s important that involvement is proportionate. The selection of papers below discusses who to involve and why, when and how – and also, more controversially perhaps, whether. Several studies comment on the skills researchers need to have if PPI is to be done well. Find out more…
- A 2019 consensus statement sets out some principles for involving the public with data intensive health research. The statement encourages researchers to see the public as part of the solution to ensure that the research benefits society.
- Ailish Hannigan’s 2018 paper in Health Expectations considers the potential for and challenges of PPI in statistical research. Hannigan notes the difficulties of recruiting sufficient numbers of people as well as representative samples of the population of interest – an issue that is particularly important for clinical trials, where important outcomes can be missed if good PPI is not in place at an early stage. Hannigan also underscores the need for research teams to have appropriate facilitation and partnership skills.
- Kandiyali and colleagues (2018) address PPI in health economics research on children. Setting out case studies to show how patients and members of the public can be involved in cost-effectiveness analyses, the authors then draw out a number of potential benefits and recommend ways forward for future practice.
- Oliver and colleagues (2019) sound a note of warning about “the dark side of coproduction”. Coproduction is a collaboration that involves stakeholders in the research process, though the term is used loosely and can be used to describe many approaches. Its aim is to make science more inclusive and democratic. Oliver et al argue that coproduction has potential benefits, but also potential risks and costs –that the latter are rarely considered. The authors advocate a more reflective approach would help ensure coproduction is used judiciously.
- An example of involving the public in a mathematical modelling study is explained in a blog by Dale Weston (Imperial College). The researchers recruited interested individuals from a large (~500) panel, and offered them a short training course on disease modelling (though uptake was low). They also pointed people to an online guide on how to read a scientific paper. PPI members then attended a one day workshop in which they critiqued a draft journal article, and commented on proposed questionnaire surveys.