Spotlight on community engagement and involvement (CEI): Managing CEI in a pandemic

The global pandemic has had a huge influence on how we work. This episode, with guests from multiple NIHR funded projects, explores how the COVID-19 pandemic affected community engagement and involvement (CEI) activities, as well as how CEI and research was adapted to cater to local restrictions and changing context. The guest speakers describe how CEI is embedded in their research, how it has benefitted their projects and the CEI work they are most proud of. In addition to this, the guests also share the  challenges they faced within CEI due to COVID-19,  how these challenges were addressed and their experiences with online CEI.

If you’ve listened to any of our podcast series on community engagement and involvement (CEI), we'd love to hear what you think!

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Please note these podcasts were recorded in early 2022. The views and opinions expressed in this podcast are those of the host and guests and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.

Transcript

Podcast series: Spotlight on community engagement and involvement: Improving global health research and outcomes through engaging with local communities

Episode 6: Managing CEI in a pandemic

SPEAKERS
Rodrick Sambakunsi, Faiza Aslam, Gary Hickey, Rajendra Surenthirakumaran, Mohammad Shahidul Islam

Gary Hickey  00:06
Hello, my name is Gary Hickey, I work for the National Institute for Health and Care Research and welcome to Our Podcast Series Spotlight community engagement and involvement: Improving global health research and outcomes through engaging with local communities. So why are we doing a podcast series? Well, the National Institute for Health and Care Research, an organisation based in the UK funds research, both in the UK and globally. In the global health research we fund there is an expectation there will be community engagement and involvement in the development and the delivery of research. But what does that mean? And what does good community engagement and involvement look like? What's worked well and what hasn't worked well? Well, that’s what we want to explore in our podcast series. So we'll be talking to community engagement specialists, members of the public, and researchers from across the world to explore their experiences and opinions on all things community engagement and involvement. And hopefully, we can all learn and improve the experiences and the opinions of our podcast guests. This episode will explore how the COVID 19 pandemic affected the community engagement and involvement activities of people and how they adapted their community engagement and involvement and research to cater to local restrictions and a change in context. So I'm going to introduce our guests and ask them to introduce themselves. So going from left to right on my screen, so Shahidul, could you please introduce yourself.

Mohammad Shahidul Islam  01:39
Thank you Gary, I'm most thankful to you for inviting me to join this important discussion. My name is Mohammad Shahidul Islam. I work at Child Health Research Foundation in Bangladesh. I’m also a PhD student at University of Edinburgh. I'm doing my PhD on global health. That's all for me. Thank you.

Gary Hickey  02:02
Thank you very much. and welcome, Suren please introduce yourself. 

Rajendra Surenthirakumaran  02:08
Yeah, hi, Gary. Thank you very much for inviting me that for this podcast. So I am Professor Rajendra Surenthirakumaran, Dean of Faculty of Medicine and also the country lead for these NIHR funded AF global research with the University of Birmingham and University of Liverpool. I'm working with these cardiovascular epidemiology research funded by the NIHR. This is a great opportunity for us to build up the local research capacity. Thank you so much for inviting me for this podcast.

Gary Hickey  02:43
Thank you, Suren. You're welcome. Rodrick. Would you care to introduce yourself?

Rodrick Sambakunsi  02:47
Thank you, Gary. My name is Rodrick Sambakunsi, I’m from Malawi. I work for Malawi Liverpool Wellcome Trust. Currently, I'm leading a project called One for All, All for One, which is a vaccine engagement project. 

Gary Hickey  03:06
You're welcome Rodrick. Thank you, and Faiza, could you please introduce yourself?

Faiza Aslam  03:10
Hello, everyone. I'm Faiza Aslam, an academic researcher from Pakistan. I work at the Institute of Psychiatry, Rawalpindi Medical University and I manage two NIHR funded collaborative research programmes which are being led by University of York, UK. I'm delighted to be part of this podcast and  I'm grateful for providing me this opportunity. Thank you, Gary.

Gary Hickey  03:37
Thank you, Faiza.  And Faiza,  I'll begin with you. So welcome, obviously to everybody, all of our guests. We're really, really pleased to have you on. Could you tell us please a little bit about your research?

Faiza Aslam  03:49
Yeah, sure. The two NIHR funded programmes that I mentioned, the first one is IMPACT that is improving mental and physical health together. And it focuses on the world's most vulnerable population, that is people with severe mental illness in low and middle income countries with comorbid physical illnesses like non-communicable diseases. And our goal is to actually carry out health research that can inform the policies and practices in order to reduce the morbidity and mortality that is related to this mental and physical multimorbidity in LMICs’. And another aim is to build the research capacity in South Asia. And the second programme that I mentioned was is DIADEM,  that is tackling depression in diabetes. And it is about developing and testing a behavioural activation intervention for people with comorbid depression and diabetes.

Gary Hickey  04:52
Thank you Faiza. I will actually ask everybody about their work as well actually. So Shahidul can you just tell us a little bit about your research.

Mohammad Shahidul Islam  05:01
So my research topic is understanding respiratory syncytial virus infections on neonatal health. I am trying to understand whether early life RSV infection increases the risk of asthma and other respiratory illness among children. 

Gary Hickey  05:17
Thank you and Suren could you tell us about your research, please?

Rajendra Surenthirakumaran  05:20
You know this northern province of Sri Lanka, currently recovering from a devastating civil war, which spanned over three decades. So we have a minimal data on health status. So then, when we collaborated, that actually the grant was offered for the atrial fibrillation. So atrial fibrillation is one that heart disease that affect nowadays and main cause for the stroke. But we don't know then what sort of prevalence and then particularly there is a Warfarin is the only anticoagulant available for the people to do the coagulation, anticoagulation therapy. So in this context, our research team wanted to know, so what sort of the population really affected by the atrial fibrillation and what are the risk factors are really there to manage and prevent the development of the atrial fibrillation? 

Gary Hickey  06:25
Thank you, Suren and Rodrick could you tell us a little bit about your research and also about how you got involved in this work?

Rodrick Sambakunsi  06:35
Mine is a project rather than a research. This is a vaccine engagement project that is aiming at co-creating some resources that can be used by researchers to engage the public on vaccines. So what we want is to co-create resources that can promote dialogue amongst the communities on vaccines, which we think will promote trust, but also understanding of vaccine research. The project, what the project did was to identify different stakeholders in different communities in order to be part of the co-creation process. And I came to be involved in this project because I've worked in public engagement within MLWT which is Malawi Liverpool Wellcome Trust for a long time, leading a department which is a champion in public engagement and also community engagement. So this is a project that is funded by Wellcome Trust and NIHR. It's a three year project, which we intend to finalise in the year 2023.

Gary Hickey  07:55
Lovely, thank you very much, everyone. Faiza, I'm going to come back to you. Could you tell us about how community engagement involvement is embedded in your research, and indeed, how it's benefited your research.

Faiza Aslam  08:09
So, the community engagement and involvement was secured in our research programmes, right from the time when we commenced formulating our research applications. So we had we convened, you know, different community groups, and we asked them about their priority areas in research that that could feed into our research questions and also to that also enabled us to identify the research, the appropriate research methods. And once the project commenced, and then once once the application was successful, and the projects commenced, we kept community engagement and involvement as a separate work stream in our research programmes. And we created working groups for community engagement that convene monthly and they decided upon the need as well as they planned the community engagement activities. We set up different community advisory groups for our programmes, they were two for IMPACT, and there's one for the DIADEM programme that convened at least once or twice a year. And they comprised of patients with experience of long term physical conditions and their caretakers, family members, and also representatives from these NGOs which are involved in the non-communicable diseases or in rehabilitation of the physical and mental illnesses and various community advocacy groups like social welfare representatives. So social welfare representatives, they have substantial experience of working in varied communities in urban as well as rural settings. And these community advisory panels that I will be referring to as CAPs in the interest of time, these CAPs they convene regularly, and they are these meetings are led by the chairpersons, which are elected by the  group, the panels themselves, and they, they advise on the research methods, our topic guides,  the tools for the that we use in our research. They also, you know, they also helped us co-design our interventions. They also advise on the local contexts, the language and culture that we use, you know, in our research tools, and they also advise us on the appropriate terminologies that we should use to give you an example, that it was through our CAP that we came to realise that the patients, the persons with diabetes, they, they are much more comfortable to be called as ‘person with diabetes’ rather than being called ‘patients’, because they they've told us that it's their lifestyle, so better, instead of calling them patients, it will be appropriate to call them persons with diabetes, and to ensure their voice is being heard and included in our research. We prepare, we document, the reports from these meetings with their due consent and after maintaining their anonymity, we present these reports to our management groups. And we also include representatives from our CAPs from the partner countries in our you know, the quarterly programme management meetings. And even for the DIADEM programme recently, we have identified a community representative, a community member, who is now being approved to be formal, independent member of the programme steering committee. So this is how we involve them. Thank you.

Gary Hickey  11:57
Thank you Faiza. So it touches some real sort of benefits there around the research tools, the interventions and indeed the language. And I wondered Suren, does that echo what you found in terms of benefits of community engagement involvement in your research? Or do you have other things to add?

Rajendra Surenthirakumaran  12:16
You know, Sri Lanka is famous now that we have a very good Primary Health Care Network and then we have a grassroot level. I belong to the department Community and Family Medicine, then we already have a very good experience of working with the community and then we have a patient support group and also community based organisations, we have developed kind of a neighborhood network and then most of these community people, they work with us and we also able to do their community based kind of palliative care and things. So, this experience really helped us when we started this project, and then from right from the beginning, so, we also able to convince the people to come and then participate when we were developing all the concepts. So as mentioned, you know that Faiza has mentioned that is that kind of community participation, but more than that, what we have done then we are able to develop kind of using the technologies helpline system. So we introduce a concept, you are health, you are one, so then the people should kind of among the people they are able to lead and be able to train them and then they became like kind of a advocates and to convince people even when we want to mobilise these particular people to this field clinics, when we want to assess their cardiovascular and their diabetes and atrial fibrillation, then all the risk factors so the public health checkup and then the community they themselves go and motivate and then engage them to involve and also be developed some kind of activity like home gardening, and then providing kind of nutritional food support, and that kind of thing also, particularly our research group is about 50 years. So, then most of the people when they are living alone, so, they need, they get some kind of a support, and also, they all feel by engaging now this active engaging in the research. So, then all these activities, we are able to kind of providing kind of a video and the modern technology and things. So, we were able to collect all the information and share and then we are able to develop a group in this thing, then they can engage and share each other and then and also communicate each other. And also we develop a kind of group to contract from centre things that particularly during the COVID we had lockdown, so people can’t move out. So, then when they want to get any kind of support, so helpline was very useful, then that was available for 24 hours. So, whatever the thing, then they need any kind of some time when they are isolated and things so then they need that kind of food and other supply. So our team was able to provide that. So, that was very helpful when we go to the field, they already engaged with us, and they understand what we are doing. And then they also felt that we are really there to support them. So they felt that this is their kind of own project, so then we were able to work with them, even these, some of the remote villages in northern Sri Lanka. So we were able to do and send this community we are able to approach around 9500 people in the community as part of this activity. So we are able to bring them all into one group and to work with us. So that is, actually and also that we got this two way approach no then top to bottom and bottom top approach. So even this administrators, policymakers, also their area, and they were also supporting us then by providing support and things, this work that I've experienced

Gary Hickey  16:58
Brilliant. Thank you, Suren. Shahidul I'm going to ask you a slightly different question. And the question for you is in terms of your community engagement and involvement, what are you most proud of?

Rajendra Surenthirakumaran  17:13
I like to say that during the COVID we like as you know, like the last three years was very unusual. And all the more we had to change our behaviour in terms of research and social practice and during this COVID many of the work has been suspended. And we have to customize our research activities. The challenge we face in Bangladesh is like during the early phase, we had very limited capacity to diagnose COVID patients, you know, like only one laboratory has the ability to diagnostic to diagnose SARS-CoV-2 virus and that's clearly a huge problem in the health sector as well as bring a stigma to the patients and the family members because they would all the suspected patients do not understand what to do next, because they are not tested. So they did not able to understand whether they are COVID patients or not, and how to behave like that, how to get sick care of that, like that, as our research activities are suspended due to government rule and restriction to meet the COVID policy, we converted our research pilot from COVID testing centres. So, we are the first team who came forward to provide extended support to the Government to ramp up the COVID testing. And we started serving 48 hospitals, while to diagnose the COVID patients. And that way we release little bit load from the health sectors but hot, I'm proud, it's like, this was an opportunity where I contributed to serve the people when they need it. Because COVID brought a serious social stigma to our people. And that time, we had fear like whether we'll survive or not, what will happen next like that. So, I feel really proud on that, like, Yes, I contributed when it was needed. And second thing is like, previously like, so, you know, like we are working from a low middle income countries. Here research, we lack research culture, and our resource are fragmented. And so, one kind of grassroot ethology, like, we do research based on the donor interest most of the time. And wherever we see like some donor interest, we try jump on that. But after joining with the RESPIRE, which is funded by NIHR, and the RESPIRE emphasis on community engagement activities on our research, and they also built some programmes under this their initiative. And through these programmes, now we have a better understanding. And there was a change in culture in our research like now, we protest the community engagement activities in our research and start thinking on that when we agenda studies. And as I mentioned, like we have already formed a PPI group to get thick advice on the local needs. And another thing we have done is like, we launched a programme called Building Scientists in Bangladesh. Under this programme, we are visiting the school, the schools, to talk with the students to motivate them on research and during this process, we are getting the opportunity to engage the general community people like the teachers, the community leaders that join are getting the opportunity to understand about research culture, and also they are being committed to support us when we do research. So in summary, like the cultural practice, the research practice in Bangladesh is changing due to this community engagement activity, community engagement and involvement. And that's why I think that if we can continue this practice that will bring more benefits to the Bangladeshi people. Thank you.

Gary Hickey  21:57
Brilliant. Thank you very much. And I'm going to ask Rodrick now, looking back over the last few years that we all know have been very COVID hit, what were the main challenges for community engagement involvement in your project? And how did you address these challenges? So over to you Rodrick. 

Rodrick Sambakunsi  22:17
So yes, indeed, COVID affected us a lot in terms of the activities that we planned. So as I've said, this project depends on the participation of different audiences. So we were supposed to conduct participatory workshops with all the participants. But because of COVID, there were some restrictions, whereby we were not allowed to gather. And this affected us because the production of the materials that we wanted, it was then difficult for us to do that. However, because because we had some members that are based in South Africa, we decided to do some of the participatory workshops online. And this helped us a lot. And also COVID affected us in such a way that the materials that were supposed to be probably done by a bigger group, we decided to do but better workshops in smaller groups, which was allowed at that point. So indeed, we are affected. But however, the fact that we did most of our activities online, these helped us to achieve our objectives. 

Gary Hickey  23:45
Thank you very much, Rodrick. And Faiza, I'm going to ask you the same question looking back over these last few COVID hit years, what were the main challenges for Community Engagement involvement in your project? And how did you address those challenges?

Faiza Aslam  24:02
Thank you, Gary. They were I mean, the COVID-19 pandemic, it has changed the dynamic dynamics of everything thing from individual level to the global level and affecting everything in involving the research activities also. The biggest and the foremost challenge that we faced with the event of COVID pandemic was the discontinuation of our face to face interaction with the participants. And the other thing was that with the imposition of the lockdown, majority of the, the people, they move to their native areas or their native villages, they shifted there, and it became it became impossible for us to access them. And we, but I always say that in amongst all these uncertainties and the atrocities of COVID there was also a blessing in disguise. Now we I now, I think that we are now better prepared, as compared to the previous years. We identified the better means to communicate with them. And it enabled us to identify that in case of such conditions, how can we approach them, and we had online consultations with our participants, with our participants, of the members of our community advisory panel. And another challenge was that they were number of rumours or misconceptions in our part of the world that spread through social media. I mean, for instance, that the COVID-19 actually does not exist, and it's an international agenda. And the healthcare providers are actually killing the people in the name of the treatment of COVID. So it was very difficult to I mean, there was a lot of fear and panic, you know, that spread in the population, and they were even reluctant to receive the calls from the healthcare providers or researchers. So first, what we did was that we had to actually regain their confidence. We started giving them courtesy calls, inquiring if they needed anything and not specifying or not inquiring if they had COVID or not, not to alarm them. And we, if they if they mentioned any problems, we facilitated them, we gave them context of the tele psychiatry services or telemedicine services that were available in those times. And we told them about the the financial support programmes and the context, you know, that the government was providing at those time. And then the repeated, you know, courtesy calls that we gave, and we tried to build up their confidence. And we then conducted the online consultation for one of our feasibility study, in which we wanted to convert our face to face smoking cessation intervention to a hybrid mode. And we took their feedback during those difficult times. And like I told you that it enabled us to communicate with those members who were actually not very much vocal during the group meetings.  They were more open, and they were more confident through this individual telephonic conversation or consultations that we had. So that was really helpful. 

Gary Hickey  27:22
And Faiza, that's really interesting, thank you. Why was it you think that they were more vocal? Is it just because it wasn't in a group setting? 

Faiza Aslam  27:31
Yeah, yeah, this is there's one point that we identified right from the beginning, you know, this community advisory panel is a diverse group, we have patients and caretakers who may who may not be literate enough to read and write. And we, on the other hand, we have NGO representatives who may be, you know, PhDs or postdoctoral fellows. So there is a diverse group that we it's really very tricky to take them together in one meeting, and we have to prepare our materials keeping this in our concentration that we have catered to a very diverse target population. To overcome this we conduct group works, you know, during our meeting, we get you know, their opinions in the form of groups, so that they are confident. And we also try to you know, give turns to the participant, but there is one issue, whether there is COVID pandemic or not, there are certain challenges that always exist. And these are the the gender inequalities and the inequalities of the socio economic groups, or the diversity in the literacy of the the community advisory panel members that we always have to mitigate, or we have to adapt, according to it. 

Gary Hickey  28:55
Thank you Faiza, so I'm going to ask a question, I'm going to throw it out to anybody so please jump in. And it's just along the lines of what Faiza was saying. And for me, obviously, lots of stuff, community engagement and involvement went online, didn't it during the pandemic. And I wonder if anyone could comment about any of the benefits, or indeed the drawbacks of working online? 

Mohammad Shahidul Islam  29:24
The great benefit is like, when are we are restricted on travelling. Still, we can continue the programmes as for example, I run a multicentre study across Bangladesh, India and Pakistan. And beside the COVID, we also have barriers to travel from Eastern countries from others like these countries share hostile borders, Pakistan, people, mostly not allowed to travel to India. Bangladeshi people often do not allow to travel to Pakistan like that.  So in that situation, the online platform helps us to organise meetings, as well as trainings. But the drawback is like during this online activities, some things can deliver very well, but certain things cannot deliver. As for example, we have a component like using spirometers and for that we needed to train the study participants or study team members properly so that they can use that in the community effectively. And due to these COVID pandemics, as well as restrictions from travel restrictions from Bangladesh to Pakistan or Pakistan to India. Initially, we added an online training. We tried our best, and it seems that it's working. But when we went to the field, some sites did not perform very well. And it takes a lot of time for us to establish that but eventually, we had to arrange training in country individually. And that is a drawback like when you arrange programmes or online programmes sometimes people do not understand the methods. And sometimes also, people lost the focus due to some other activities, receiving the phones or are bringing their attention to the other things. That's why sometimes it's better to arrange in person meetings, sometimes it's helpful to arrange online meetings to save the travel times and all resources. Thank you. 

Gary Hickey  31:38
Thank you Shahidul. I'm just very aware of time. So before we go on to top tips from people, I'm just going to bring Suren back in to ask Suren, what if anything, you would have done differently on the community engagement involvement on your project, Suren?

Rajendra Surenthirakumaran  31:55
Yeah, actually, that our project, after starting that to the field, we really got this COVID pandemic. And then as I mentioned, and even our initial this community engagement, then we immediately able to make this arrangement to educate the people about COVID preventive measures, and also then provide kind of online support and also the particularly during the lockdown that early part of the COVID, then I'm talking about 2020, this March to May, so then, our country that we were on lockdown that was before the during the first wave of the COVID. So then, that was a very new disease. And then, because of our team already developed a relationship that was very helpful for the people to educate. And also, we use that opportunity to educate related to the COVID. And then we are able to make use then to do the community surveys, because we will be forced to do these community surveys, we can’t do these telephone based surveys, because we had to go and measure the single lead ECG and other parameters. So then our people were going with mobile phones, and also then we had to use these single ECG thing to do the ECG and see whether they have the kind of atrial fibrillation. So our team when they go to the community, and we were able to develop kind of a community guide, how to make it for the people also don't know most of the people, our participants are over 50 years so now they are the risk people and also with comorbidities. So then problem, we our team, the young people, we have to avoid them to not transmit that COVID to our vulnerable group. So at the same time, we should be able to carry out the research. So then we were able to adapt various measures. And also then we particularly get the help of family members to engage. And they were really helping us and then without the symptoms. And also we send our people for the regular screening for the COVID-19 and also get that kind of certification then with that, only that our people go to their houses and our our the people in the community also. Because our this already build collaboration, and the partnership really helped us so then we were able to do the or continue our project without kind of any disruption. This community engagement really helped us. So we actually develop a kind of a mechanism for these mutual understanding, then supporting each other and work together. So kind of community team building activity really helped us to continue that project with all these kinds of challenges during the COVID-19.   

Gary Hickey  35:33
Thank you very much. Right, I've got one question. And if you could just give me like one line. And the question is, if you were giving advice to someone looking to embed community engagement and involvement in their research, what is the one key tip you would give them? And if one could be very quick with this, and I will start with Rodrick.

Rodrick Sambakunsi  35:53
I think the, what I would say is make sure that you put aside enough resources, because community engagement and involvement is not cheap, it needs resources to be able to do it properly. Thank you. 

Gary Hickey  36:09
Thank you very much, Roderick. So resources, Shahidul?

Mohammad Shahidul Islam  36:12
So we should not add the community engagement component in the research, as the donor ask for it, it should come from our thoughts, and we need to plan for this community engagement activities when we start thinking of the research projects. Thank you. 

Gary Hickey  36:30
Thank you. So making sure we plan for it. Suren?

Rajendra Surenthirakumaran  36:33
Really, that this community engagement and involvement is a real learning opportunity for us. But it's really helped us, for them, developing that ongoing research, and also then our future work with the community. So and also that our regular meeting with partners, no global partners, particularly University of Birmingham and Liverpool, and also that global partners in Brazil and China and their experiences, also, then we share each other in our quarterly meeting. So all these kinds of things helped us and to add up new mechanism and also how this community engagement and involvement now that we are really, we have published one book. 

Gary Hickey  37:30
Thank you. And Faiza just give you the final word, what was the one tip, top tip you'd give someone for someone seeking to embed community engagement and involvement in their work?

Faiza Aslam  37:41
My opinion, one of the most imperative things is that we should enhance the capacity of the research team. To be very honest, in our part of the world community engagement is something we are we were, you know, completely naive. And there is one myth that exists and it's prevalent in our researchers in our part of the world that they consider themselves superior to the patients or the communities and they think they are more knowledgeable. So we need to break this myth and the research team should be trained, and they should be, you know, the biggest advocates and promoters of community engagement and they should be empathetic towards the community members and it is our research team that should you know build in the confidence of the community members. They should also be confident they should regain their self confidence and they should equally treat them and consider them as partners in research. Thank you. 

Gary Hickey  38:40
Fantastic Faiza. Thank you so much. We have a similar thing certainly I think in the UK about the researchers sometimes and we often refer to as a hierarchy of knowledge where people believe that their knowledge base is somehow superior to that of others and again, what we always tell people, researchers, is that members of the public communities bring a different knowledge base, but it's equally as valid equally as important as  that of researchers but I wholeheartedly back that. So I just want to say to everybody, to Faiza, to Rodrick, to Shahidul, to Suren, thank you very, very much for giving up your time to record this podcast today. And for those listening to the podcast, I hope you enjoyed it as much as I enjoyed listening to everybody, and talk to everybody. And if you did enjoy it, even if you didn't enjoy it, please check out the other podcasts that are available. So thank you and have a lovely day, everybody. Thank you.