This podcast is part of the Science Matters. Let's talk about COVID-19 course. Hello, I'm Helen Ward. I'm Professor of Public Health at Imperial College London, and I'm Director of the Patient Experience Research Center. We've been doing some early community involvement and engagement around the COVID-9 response in the UK. So today, we're going to be talking with a couple of my colleagues who've been leading on particular aspects of this work to explore how they've adapted their methods to work under conditions of lockdown and remotely, and to tell you some of the findings that we've had so far. So I'm Dr. Philippa Pristera. I'm a researcher and public involvement adviser working with Helen in the Patient Experience Research Center. I'm Meerat Kaur. I am part of an organization called ARC Northwest London, which is a partnership between Imperial College London and the NHS. So can I start by asking you, Phil, to briefly explain the meaning of public engagement and involvement? Yes. So people may be more familiar with the term public engagement, which within the science and research field generally refers to the times when researchers are raising awareness of their research, sharing knowledge, and creating dialogue with the public. So Science Festival seminars or the after hour events are often known as lates, are good examples of this. Public involvement in research is then a sort of extension of this engagement. It's where people share their personal experience of health and care to guide and inform how research is designed, carried out, shared, and adopted. In other words, research is done with all by members of the public rather than being just subjects of the research, and in this phase, the public could be patients, potential patients, carers, or people from organizations that represent those who used health and social care services. Of course, researchers could be included within this, but as researchers it's important that we sense check our plans and assumptions with people outside the health and scientific profession to ensure that what we're proposing is acceptable, feasible, and relevant to the general public. So Meerat, can you explain what we mean by community and its role in this kind of work. So community means groups of people who are connected through shared characteristics that could be where they live, their religious beliefs, the language they speak, and often it's many of these characteristics. So when we talk about community engagement and involvement, it's related to what Phil spoke about when she's talked about public engagement. But we refer to community engagement when we're speaking of engaging groups of the population, and this can be through community groups or networks that work with these populations. Crucially, these groups, networks, and key leaders have strong relationships and have built up trust with people in the community who we in academic institutions may not always hear from. So meaningful community engagement and involvement can be a useful way of ensuring we hear from people who may be seldom heard. Phil, in the middle of March, you launched the engagement and involvement initiative to find out how people were responding to COVID-19, which was intended to help guide the research at Imperial, can you briefly describe what you actually did? Absolutely. So as you mentioned, we were looking to start some social research to explore the public experience of the outbreak. So to guide that work, we started our own public and community engagement involvement activity. It started with a bit of trial work, really with family, friends, and some public partners who support our work at Imperial. From that trial, we created an online form using Qualtrics, and this form asks a number of questions such as how people were feeling about the outbreak, what they thought were important research priorities, which communities they thought we should engage, what information gaps or unmet needs they had, and how they thought the public could be more involved in the outbreak response. The responses were captured with a combination of free text boxes and multiple choice options that have been guided by the earlier trial work we've done, and we distributed the form to existing public partners by e-mail and WhatsApp, asking them where possible to share with others to extend that reach, and then we also use Twitter, and community newsletters, and Newcastle University's online platform voice to share it further. These forms were run between the 6th and 15th of March, and in total received 420 responses, which came from every region of the UK plus 15 from abroad. Almost three-quarters of the respondents were members of the public from a range of ages and backgrounds. We confide as themed responses that we captured and then release that as a report which is available online in a number of languages. Great. So just highlight some of the key findings that you got from this early feedback. I think there were three key things to take out from this exercise. Firstly, there was very strong support for social studies to happen during the outbreak. Respondents thought that exploring the public's experiences and behaviors could improve how the outbreak response is planned, as well as how the public and community members are informed and support it. They also suggested other areas of research actually, such as understanding the role of the media in influencing how people react and respond. The second key output was the issues that were raised. The responses were so consistent, I don't think I've ever found something so easy to theme. We had two other researchers involved in this and we all came up with same narrative. So respondents highlighted ineffective communication, which included poor access to information, conflicting guidance, and information overload. They also highlighted a lack of detailed practical guidance and a lack of trust and transparency in the UK government's decision-making. Specific concerns have probably now been superseded by the current lockdown, but many are still ongoing issues. Finally, the third thing I want to highlight is people's willingness and eagerness to support COVID-19 research and the outbreak response in general. People want to help, they want to know about and understand and guide the science behind the outbreak. They want to help communicate that with of this that they know and what they know and share about their concerns and challenges is really useful and important to us. So we need to continue this dialogue by reaching and engaging as many people as broadly as possible. From this online activity, we now have a network of over 200 people who could be further involved in our work. But there were actually over 50 distinct groups of people suggested via this exercise about who we should be engaging. So we all need to do a bit more to ensure their views are represented as we rapidly develop research and solutions in response to the outbreak. Thanks Phil. That's really interesting. So just turning to you Meerat. So can you describe what you and your team have been doing with the local community particularly? So we want to essentially understand what's going on in the community setting. We've built up strong relationships over the last 10 years with community groups and through these, we learnt of various issues and areas of concern for different groups. So for example, through the BME Health Forum, we learned that there was variations in how communities felt about COVID that includes, for example, some of the Iranians community who were quite anxious about the situation. But additionally, and I'm sure others are aware too, that nationally we've seen community organizations being really responsive to the situation. Religious communities, for example, are providing food to hospitals and the homeless. Organizations such as Sickle Cell Society, providing emotional support and tailored advice for their specific population groups. Our CCG colleagues have highlighted to us that they are unsure whether this help is being provided to everybody who needs it or whether we're missing pockets of the population who aren't getting the help they need. So we've sent out a survey to key people and community organizations across North West London to capture relevant information, including what organizations are doing and the communities that they're working with and serving. So we aim to use this data to provide a visual map of newly created community-level infrastructure or the responsive mechanisms that have been setup for COVID. Crucially, we want to feed this data back to community organizations to help them shift mobilization to address areas of need. Our longer-term aim is to really understand the impact of this community involvement for healthcare systems and for statutory organization. What is the value added almost from this type of approach? It's interesting that the approach that Phil has described is really reaching out through networks but getting feedback from individual members of the public. Meerat's describing a more systematic way of reaching out to the organization's key leaders and influencers within communities to identify some of those needs. I think both of these are important when generally in an outbreak response in particular, the COVID- 19 response, we're talking about the importance of community engagement. It does have to operate a number of different levels. So just coming back on that, Meerat, what do you think is the impact of this involvement and engagement and where can it go in the future? So as you've touched on community organizations and networks hold amazing knowledge, skills, and experience that can help us understand and address factors that impact people's health and well-being. They have built up huge amounts of really strong relationships and trust, that's second to none really. So working in real partnership with these organizations helps us understand as researchers, the underlying causes that impact people's health and well-being and crucially reach out to people who we may not otherwise be hearing from. Community settings and organizations have been critically underfunded and under-resourced in recent years. They sometimes feel partnerships with academic institutions do not help, including because at the time it takes to produce data that is usable for them. So in terms of next steps, we really need to learn how to work together more successfully, especially through conducting research that aims to facilitate social change and ensuring we also embed rapid evaluation techniques. Then we also need to challenge the wider academic infrastructure, including funders, to ensure we can commit resources and support to ensure meaningful partnerships with communities. This might include, for example, tailored training programs for communities to become researchers and evaluators themselves and therefore be able to understand issues that really matter to them. Okay. Thanks, Meerat and Phil. I'm just going to come back to you with one last question. Phil, could you slightly update us on what's happened since that survey in terms of ongoing involvement and engagement with members of the public and how it might shape our future research? Yeah, absolutely. It's what we learned from the online forms that you can rapidly capture insights from the public remotely. However, you can't always get the depth of insight or the follow-up through an online form. We felt it's important to also have discussions with people. So in addition to establishing an ongoing series of online forms, we also hope to establish a series of online discussions which we hope to host via Zoom. I hope to have these weekly and they'll be themed around important and emerging topics relevant to COVID-19 research happening at Imperial and to discuss areas of the outbreak response as well, such as the exit strategy, particular guidance that will be released to people helping to inform and shape the communication that's going to be released to the public. Just really making sure that as we rapidly develop our plans and these solutions as part of the outbreak response, that the public were involved in and consulted in the development and the decisions. Thank you both very much for your insights and showing practically how we're actually doing this work on the ground. We look forward to come back to you at a future date and finding out what's happened since. Thanks. This podcast was produced by the Abdul Latif Jameel Institute for Disease and Emergency Analytics, J-IDEA for short. In collaboration with Imperial College London, the MRC Center for Global Infectious Disease Analysis and the Digital Learning Hub. This podcast was hosted by Professor Helen Ward with guests Dr. Philippa Pristera and Meerat Kaur. Our producers are Dr. Katharina Hauck, Professor Helen Ward, Dr. Sabine Van Elsland, Oliver Geffen Obregon and Juanita Bawagan. The podcasts was recorded by Nikos Mexis and edited by Anne Marie Rutzou Bruntse and Tiziana Mangiaratti.
