Following on from the panel discussion at the public involvement in a pandemic report launch, our panel members have answered top questions below.
Contents
Panel members
Adele Battaglia, Public Contributor, Health and Care Research Wales Support and Delivery Centre Public Involvement Community
Bec Hanley, Facilitator, Charities Research Involvement Group
Jeremy Taylor, Director for Public Voice, National Institute for Health Research
Jim Elliott, Public Involvement Lead, HRA
Margaret O’Hara, Patient & Public Involvement & Engagement in Research Lead, University Hospitals Birmingham NHS Foundation Trust
Rebecca Burns, Public Involvement Manager, Health and Care Research Wales
Sinduja Manohar, Public Engagement and Involvement Officer, Health Data Research UK
Question 1: Considering the urgency and speed of COVID research - how do we ensure good PPI is taking place?
Bec Hanley, Facilitator, Charities Research Involvement Group:
Depends on who ‘we’ is – but I’d say:
- Work with PPI experts to ensure you’re doing the best job you can with the resources you have available. By ‘PPI experts’ I mean people who have a paid job to support researchers and research institutions to do this well, and patients, carers and members of the public who already have some experience of involvement.
- Draw on existing panels and groups – that’s why the matching service is helpful.
- Try to get funders to require PPI as a condition of funding and then have meaningful PPI in how these applications are assessed.
Margaret O’Hara, Patient & Public Involvement & Engagement in Research Lead, University Hospitals Birmingham NHS Foundation Trust:
Funders already have processes for ensuring that PPI is an essential component of research, but the requirements seemed to have been relaxed during the pandemic. This is understandable up to a point, but it was unfortunate to see PPI being considered as an optional extra which could legitimately be abandoned. Especially when, in instances where it was done, public contributors were keen to help and worked quickly to turn things around. For me, it exposes how PPI is not embedded in the working culture of many investigators. Where PPI is normal practice, those relationships already exist and public contributors can be quickly and readily called upon. From the patient/public point of view it is dismaying to observe large sums of money being given to research which doesn’t properly address our needs because we weren’t involved in its creation. I’m not sure funders understand the degree of distress and anger felt by communities of people with health conditions when inappropriate and inadequate research is given public money. A great deal of energy and resources are expended by patient groups in combatting the damage done by poor research and these battles can go on for years after the researchers have published and moved on.
'Patient communities want to work constructively with investigators but this must be done through equal partnerships of mutual respect. Nowadays when new diseases emerge, such as in a global pandemic, communities of people with the condition will very quickly self assemble on social media and can be found online. Clinical academics who are both in the thick of healthcare provision and trying to establish trials, need help in seeking out contact with these newly established communities. I think this is partly the responsibility of their institutions who should assist them through existing research support structures. Again, if this were the normal way of working, this could be done quickly enough to do meaningful PPI even at speed. If the HRA were to maintain the matching service, then this could be a powerful vehicle through which such connections could be made. Perhaps the HRA could itself do some of the scoping work to seek out newly established patient communities when new diseases emerge.
Adele Battaglia, Public Contributor, Health and Care Research Wales Support and Delivery Centre Public Involvement Community
I really do believe that there is an opportunity to raise the profile of PPI, especially during this pandemic. As the urge and speed of COVID research gains momentum, combined with the roll out of the current vaccine programme, the public and patients are becoming more aware of the importance and value of research. This would be a timely chance to raise the profile, through a range of marketing options to highlight the importance and benefits of PPI involvement.
Jeremy Taylor, Director for Public Voice, National Institute for Health Research:
By building on existing relationships; by ensuring there are feedback loops for public contributors, involvement leads and researchers to say how well it’s going. By national bodies communicating clear expectations.
Jim Elliott, Public Involvement Lead, HRA:
The key is what was done in response to the drop in involvement during the pandemic in the form of a clear high level message from across the research system, especially sponsors, funders and umbrella organisations and trade bodies about the importance of public involvement as a fundamental part of high quality research for patient benefit. That needs backing up by the expectation that patients and the public will be involved in all research across all sectors with sponsors, funders and other key decision makers such as regulators putting a strong emphasis on public involvement as part of their decision making.
Question 2: My experience with the matching service was excellent, is it possible the matching service might be extended to non COVID-19 studies?
Bec Hanley, Facilitator, Charities Research Involvement Group:
I think this is a great idea. Charities Research Involvement Group would be very happy to work with HRA and others to take this forward.
Margaret O’Hara, Patient & Public Involvement & Engagement in Research Lead, University Hospitals Birmingham NHS Foundation Trust:
I think this is a great idea, but we need a discussion about where this sits with People in Research and other networks. The other issue is that the matching service is controlled by the HRA and is less accessible to members of the public. I would suggest exploring platforms such as Newcastle University’s VOICE Global, as a global space for connecting investigators with the public in a format which gives control to public members over the information they receive. And, as ever, resourcing has to be considered. This could not be undertaken lightly and it would need adequate and sustainable funding.
Jeremy Taylor, Director for Public Voice, National Institute for Health Research:
Yes
Jim Elliott, Public Involvement Lead, HRA:
It certainly has the potential to be rolled out but it will need to be done collaboratively and carefully to ensure any future service complements other systems to support public involvement and has widespread support of research sponsors and funders across all sectors in the UK.
Question 3: What processes do we have to put in place so that grant funders no longer fund research which hasn't had meaningful patient involvement?
Bec Hanley, Facilitator, Charities Research Involvement Group:
We need commitment and leadership from the bigger funders on this – for example what are Medical Research Council and Wellcome Trust doing? Why didn’t NIHR come out with a statement early on from a senior figure to say, we recognise that there hasn’t been PPI in some of the early COVID research, but we’re committed to it because we know it adds value, so we’re going to encourage researchers who have already got funding to involve people from now, and we’re going to require PPI in all new funding applications.
British Heart Foundation supported some COVID research in the early stages which had no PPI, but it has worked hard to involve people affected by heart disease and people affected by COVID in this research more recently. Well done them.
Margaret O’Hara, Patient & Public Involvement & Engagement in Research Lead, University Hospitals Birmingham NHS Foundation Trust:
I think that the processes by which funders determine whether a grant application has had meaningful public involvement require some improvement. At present, for funders where the process even exists, it is a paper based exercise based entirely on the content of the grant proposal. I have seen a great deal of variability in the feedback given by reviewers as to the quality of PPI as evidenced in grant applications and I think funders have some work to do in order to improve this. By the time the HRA sees studies, they have already been funded. I’m not aware of ethics committees refusing to give ethical approval on the basis of poor or absent PPI, but I think we need to move in this direction. As the HRA itself details in its PPI guidance, this is an ethical issue. The HRA could provide a further backstop to weed out studies with poor quality or absent PPI by refusing to grant ethical approval. If the HRA were to signal such a move, then this would focus the minds of institutions, investigators and funders on the need for good quality, meaningful PPI from the beginning of their research studies.
Jeremy Taylor, Director for Public Voice, National Institute for Health Research:
Funding and commissioning panels can already do this. It’s a question of how willing they are to take a stand where this happens. An important question is whose account of the public involvement are they considering? This will generally be the applicant. Do we need to insist that the public contributors themselves get to report on the PPI that has happened up to the point of the application?
Jim Elliott, Public Involvement Lead, HRA:
A few funders do this and others are getting closer to it. However, until it is uniformly recognised that without insights from people who have direct experience of a health condition or social care situation you can’t be certain that what is proposed with be important, relevant and acceptable to the people studies are intended to benefit then this will not happen across the board. Most funders will say that they fund the best science but most probably do not recognise that involving patients and the public is part of what defines good science in that it ensures that the science should make a difference to those it is intended to help.
Question 4: We have used the NIHR to contact PPI groups - how does the HRA PPI groups align with the NIHR groups. Are there plans for a directory?
Margaret O’Hara, Patient & Public Involvement & Engagement in Research Lead, University Hospitals Birmingham NHS Foundation Trust:
I’m not aware of alignment with People in Research and the HRA matching service I think there is an opportunity now to rethink how we facilitate networking between the public and research professionals.
Jim Elliott, Public Involvement Lead, HRA:
The matching service created a network of public involvement groups and networks as a pragmatic way of bringing together a lot of public contributors who were interested in getting involved in research into COVID-19, with help from NIHR and the Charities Research Involvement Group. The groups and networks were from a wide range of organisations who were interested in helping including many NIHR groups and those from charities. The intention was always to help researchers who either did not have any existing relationships with public contributors or with public involvement professionals who could help them. Any researchers who got in touch with the service and did have either or both were directed to them in the first instance. What was set up wasn’t expected to be perfect, but it worked well in the particular circumstances it was set up for and has the potential to be more widely beneficial, which will be explored in collaboration with all those who are interested. See the answer to question 2 in relation to the possible future of the service.
Question 5: Payment for involvement now needs tweaking. There is still a cost to involvement with internet and device use - is this being changed because of COVID?
Bec Hanley, Facilitator, Charities Research Involvement Group:
We really need to think about how the movement to online involvement excludes some people – funding to cover cost for internet access might go some way towards that. And maybe the Centre for Engagement and Dissemination could offer guidance to PPI leads and others about how to access funds and other support to help people get online if they want to.
Margaret O’Hara, Patient & Public Involvement & Engagement in Research Lead, University Hospitals Birmingham NHS Foundation Trust:
The NIHR updated their guidance fairly soon into the pandemic to recommend expenses of £5 in respect of expenses associated with online working. I think this needs further discussion as part of a wider community debate about payment for involvement and its role in removing barriers to involvement. Payment for involvement is a continuing problem and numerous issues cannot be solved at an institution level, it requires national leadership to address some of the problems experienced by institutions and individuals with respect to tax, benefits and financial processes. I believe that involvement in nationally funded research should be viewed as a civic service and exempted from income which is deducted from benefits. This requires change at a high level.
Jeremy Taylor, Director for Public Voice, National Institute for Health Research:
NIHR Centre for Engagement and Dissemination (CED) has taken over the INVOLVE responsibility for guidance. We are keeping payment under review. The underlying principle is remunerating people for their time (and expenses) and these are incurred whether contributing physically or remotely.
Jim Elliott, Public Involvement Lead, HRA:
I feel that there is a need for greater consistency and collaboration on how best to reward and recognise the involvement of patients and the public in research in all sectors. The challenges of working online during the pandemic has created many new opportunities but created and highlighted inequalities too. Some people have been excluded by the move to exclusive online working whilst others have been able to get involved when they hadn’t been before. We need more creativity in order to be more widely inclusive rather than assuming that online working will suit everyone. Whichever way people are involved in research their contribution must be rewarded or recognised in some way, ideally with some form of payment based on time and tasks. Out of pocket expenses must always be covered, ideally directly by the organisation responsible, wherever possible, but if not then costs incurred must be remunerated as soon as possible.
Joint response from Rebecca Burns, Jim Elliott, and Jeremy Taylor:
A cross-national working group has been established to explore the issues related to challenges of public contributor payments for research involvement activities. This group includes policy representatives from England and Wales, along with Health Research Authority colleagues, public involvement leads, researchers and public contributors.
- The objective is to develop a clear statement on the importance of managing payments for public contributors to aid effective public involvement and providing guidance to organisations on managing the tax and employment liabilities.
- The first stage will be the development of a guidance document to support conversations with finance and HR teams on managing these issues, and includes an aim to get the document endorsed by the relevant Government departments (including HMRC). The second stage will be to develop a public facing document that explains the processes.
- The working group will update and collaborate with the group that coordinates policies and standard for public involvement in health and social care for the four UK nations and Ireland.
- Benefits Advice Service: A free, confidential and personalised service (launched in January 2015) is coordinated by the Bedford Citizens Advice Bureau to support members of the public whose welfare benefits may be affected by payment for involvement. Organisations subscribed to this service include: NIHR, HRA, NHS England, Health and Care Research Wales, and the Social Care Institute for Excellence.