In most emergencies, affected communities play a key role in initiating and leading response activities – in stark contrast to the stereotype of people overwhelmed by the emergency waiting helplessly for help from outsiders.
This came out vividly in the evidence we gathered during our inquiry into the ethical conduct of research in emergencies – in particular through our four evidence reviews of how communities respond to emergencies as diverse as tsunamis, hurricanes, nuclear accident, and the impacts of war.
The importance of community activism is equally evident in the current COVID-19 pandemic – from reports of young people across the world leading the response in their communities to the sterling work of local football supporters in Wimbledon (to use an example from my own backyard) in collecting and distributing food to those in need.
Community agency and community engagement
In our report on the ethical conduct of research in global health emergencies, we argue that community agency has important implications for researchers. It reinforces the duties of accountability that researchers owe to those communities, and highlights again why research needs to start from an understanding of the experiences and concerns of those affected. Serious and respectful engagement between researchers and communities (and recognition of the diversity and complexity of the subgroups that make up any ‘community’) are core to ethical conduct throughout the whole research endeavour. Such ‘community engagement’ has instrumental value: it helps demonstrate trustworthiness and transparency, and can improve the quality and relevance of the research. Even more importantly, though, it has intrinsic ethical value: demonstrating respect for the equal moral worth of those likely to be affected by the research. In short – meaningful engagement makes the difference between doing research ‘with’ people rather than ‘on’ them.
Engagement is likely to take many different forms in many different countries. Particular challenges arise in cases where researchers’ lives and expectations are quite alien to those of their prospective participants – whether they come from other countries, or from socially or geographically remote areas within the same country. But as the latter example demonstrates, speaking the same language or sharing citizenship of the same country does not mean that researchers and communities share the same knowledge, beliefs or experiences. Most members of the public do not have the scientific expertise of research teams – and research teams are unlikely to have in-depth knowledge of how the emergency may be affecting different groups in different ways. Yet these various forms of expertise are all required for research to be relevant and valuable.
This is not the time or place to debate differences between ‘patient and public involvement’ (PPI) in the UK context, and ‘community engagement’ as used in global health research literature, although there may be many differences of nuance and approach. The fundamental ethical requirement to research ‘with’ local communities (whether these communities are geographic, linked by a particular health condition, or other) remains.
How about COVID-19 research?
In recent conversations I’ve been dismayed to hear the argument that “there isn’t time to do engagement” in the UK given the urgency of much COVID-19 research. This impression has been reinforced by the recent #WhyWeDoResearch tweetchat involving NHS staff, patients and academics across the UK, where it was reported that: “nearly all patients said that Public and Patient Involvement (PPI) had come to a close”. If it’s not acceptable to argue ‘there isn’t time to do community engagement’ in recent Ebola outbreaks in low resource settings (and all the evidence showed it was both possible and essential for successful implementation) – then it certainly isn’t acceptable to argue that there isn’t time to involve patients and the public in UK COVID-19 trials. Indeed, the existence of well-established PPI networks around the UK, the fact that COVID-19 potentially affects us all, and the ready availability of many different forms of remote discussion / conferencing facilities should give us a flying start.
Renewed commitment to engagement – and access to resources
Given these snapshots of what’s (not) happening, it is reassuring to see the National Institute for Health Research (NIHR) publicly emphasising the importance of engagement. Launching new commitments for PPI, engagement, and participation in COVID-19 research on 16 April, Jeremy Taylor, NIHR Director for Public Voice, reiterated: “Health research should be a shared enterprise with patients, carers and communities. COVID-19 has not changed this. Indeed, the public contribution to research on the pandemic is vital. Let’s renew our commitment to partnership working.” Resources, including guidance on using different virtual meeting tools are being shared on the NIHR Learning for Involvement site; and the NIHR Research Design Service is offering top tips for carrying out PPI activities during COVID, despite the challenges of social distancing. Guidance on processes of public deliberation during COVID-19 (not limited to the field of research) is also being developed by the organisations Involve and the National Co-ordinating Centre for Public Engagement.
Looking beyond the UK, there are examples of innovative approaches in Africa and South East Asia shared by a group of international research networks, including considerations of how to reach those who do not have access to a smartphone. We heard in our latest webinar how Brazil is developing a model of “community epidemic situation rooms” bringing together health professionals, researchers, and communities to discuss not only research but also how to meet pressing social needs arising out of the pandemic.
And some great examples
And with a bit more digging, it’s been great to see that there have indeed been some impressive examples of how patient and public voices are influencing the UK COVID-19 research agenda. For example:
- Priorities for mental health research during COVID-19, published in the form of a call for action to funders, researchers and others, were informed by surveys of the public and an expert panel convened by the UK Academy of Medical Sciences and the mental health research charity, MQ. (See here for an account of the process by one of the contributors with lived experience.)
- The Patient Experience Research Centre (PERC) at Imperial College London is drawing on the VOICE online platform in order to “capture the opinions, experiences, preferences and unmet needs of communities in the UK during this outbreak” – both to inform its own socio-behavioural study, and to inform Imperial’s broader research agenda during the outbreak.
- The CO-SPACE study into how families are coping with the challenges of COVID-19 drew on its existing group of parent / carer advisors to obtain input into the study design and critique the draft questions, as well as looking at the information for participants. By engaging with wider groups of parents / parent organisations once the study was up and running, researchers were able to identify subgroups who are having a particularly difficult time under COVID-19, and have added in additional questions at follow-up points to capture these experiences. By sharing emerging findings through webinars, they have also been able to use participant feedback to help inform the questions they ask of their data. To quote one of the parent advisors: “All my points were taken on board and my perspectives helped shape the study design. It is really important that this study is developed with the views and opinions of the people that it is aimed at in mind.” It’s good to hear that UKRI has just agreed further funding for this project, enabling further extension of PPI input.
- Health Data Research UK has created a 62 member COVID-19 PPI group to provide a diverse group of voices and views, willing to help shape and develop work by HDR partner organisations.
It’s been harder to find examples of such comprehensive engagement in the biomedical research field – particularly in connection with vaccine studies. While the priority to be given to vaccine studies may seem to be self-evident, public involvement has an invaluable role to play in issues such as how to achieve fair recruitment strategies if a candidate vaccine looks promising. However, it’s good to hear how members of existing PPI groups have been actively involved in reviewing patient information leaflets, consent forms, and other documentation in a number of major clinical trials, including RECOVERY (testing the effectiveness of drugs licensed for other conditions in the care of people hospitalised with COVID-19) and PRINCIPLE
(Platform Randomised trial of INterventions against COVID-19 In older people). To quote one PPI group member: “It is often difficult for researchers to fully appreciate the value of PPI input but all of us who contribute can bring a perspective to research that may, and indeed often is, missed by researchers themselves. All the PPI contributors I know are willing to work as quickly as possible on any COVID-19 project. We are a resource that is here and waiting to go!”
Complementary role of social science studies
In parallel with such engagement with the development of research studies it’s also crucial that social research engages with people’s experiences of living in the shadow of COVID-19 – whether under lockdown or as key workers required to expose themselves to risks of infection by the nature of their job. Such research helps inform both public policy and future research priorities. One of our funders, the Nuffield Foundation, has made an impressive start, funding seven research projects exploring the social implications of the pandemic in real time. These vary from the UK-wide COVID-19 social study seeking to understand the social and psychological impacts on a wide cross-section of adults, to more narrowly focused studies with those who may be particularly affected – for example financially, emotionally, or educationally. All the studies include plans for early dissemination of findings, to ensure that these are available to inform policy.
Other examples (of many) include comparative international studies such as the Global study of social trust and mental health run by an international team of researchers in a number of languages; and the online survey of adults in the UK, Italy, Malaysia, and Thailand, aiming to inform approaches to non-pharmaceutical interventions such as travel restrictions, social distancing and communications. In the parliamentary sphere, the House of Commons Women and Equalities Committee has launched an inquiry
into the disproportionate impacts COVID-19 may be having on people with protected characteristics under the Equality Act.
The best can be the enemy of the good
As we emphasise in our global health emergencies report, the disruption, urgency and social anxiety inherent in emergencies create a real challenge for researchers. Normal timescales and systems are turned upside down, and it may be tempting either to say that usual practices (such as PPI) need to go by the board, or that research itself is impossible. Neither is true. As a contributor to our Dakar community engagement workshop urged us: if the systems for engagement are not already in place before the emergency, then you need to adopt a process of ‘learning and adapting’ – finding ways of engaging as much as possible, and developing systems as you go. In the UK context, with well-established PPI structures associated with many of the major centres conducting COVID-19 research, it is a case of ‘learning as you go’ with different forms of socially-distanced engagement.
To quote the modeller Adam Kucharski from the London School of Hygiene and Tropical Medicine: “It’s about being ‘about right’ now, rather than perfectly right too late”. I look forward to hearing about many more examples of ‘about right’, if imperfect, community engagement informing UK research.
With thanks to Kate Harvey, Polly Kerr, Bernard Gudgin, Julia Hamer-Hunt, Cathy Creswell and Sinduja Manohar for their contributions and examples.