The uncertainty around COVID-19, the asymptomatic transmission and the immediate and long-term health consequences have highlighted the responsibility that longitudinal studies have to ensure the safety and wellbeing of their study participants.
Like many others, the MRC Unit for Lifelong Health and Ageing at UCL took the decision to halt face-to-face data collections for two of its cohort studies, Insight 46 and LINKAGE, before the official UK lockdown on Monday 23rd March 2020. Whilst this had a significant impact on the studies, we were able to adapt quickly and begin novel data collections to understand the impact of COVID-19. Now, several months since the peak of the pandemic, we are implementing processes that will allow us to continue collect data in this ‘new normal’.
Innovation – LINKAGE: COVID-19 sub-study
Numerous studies were set up to research COVID-19, but LINKAGE, which tracks the health and wellbeing of those aged over 70 in the London Borough of Camden, seeking to understand how acute illness is linked to health and social care outcomes, was uniquely placed to understand why the virus disproportionately affects older people. The study team followed participants at all stages of infection: from being well, into early infection and throughout the course of the illness. All participants were visited at home over a period of 16 weeks by a healthcare worker in Personal Protective Equipment (masks, gloves, aprons) to obtain swab and blood samples – providing a baseline and evidencing exposure to the virus at this point. They then received regular follow-up health assessments by telephone call and online questionnaires. Key to the success of this study was the rapid recruitment of available staff, who had suddenly stopped working on suspended clinical trials, and were able to begin working on this study immediately. The study has now recruited 1,467 participants and taken 1,465 samples (92 of which were symptomatic).
Collaboration – NSHD and SABRE
The pandemic has emphasised the value of collaboration and embracing new technology in order to adapt to rapidly changing circumstances. The MRC National Survey of Health and Development (NSHD) and Southall and Brent REvisited (SABRE) study routinely use the traditional mode of a paper questionnaire to collect data. We tend to repeat questions at multiple ages to get longitudinal data so postal questionnaires are easy to design, but they also require significant work in administering and data processing. As a result of the lockdown however, we needed to move quickly to collect real-time data on COVID-19, but also realised that using postal questionnaires would not be the most optimum route. An opportunity presented itself to work closely with the Centre for Longitudinal Studies (CLS) at UCL, which runs four of the UK’s longitudinal studies, and a web survey was rapidly designed and sent to all six studies. Across all studies, we were only able to invite those who had provided an email address to participate, but were extremely pleased that over 18,000 study members across the cohorts responded to this request. Initial analyses of this first questionnaire are underway and we have just launched a second questionnaire.
This time round we have used a fieldwork agency to administer the questionnaire and are now able to invite more study members to participate by sending out invitation letters, emails and text reminders. In NSHD, early indication from the fieldwork suggests a similar response rate to the first questionnaire, but also highlights the importance of collecting data from the 20% of the participants who do not have computers. Thus, the use of technology enabled us to react quickly and paves the way for future data collections to be carried out online. However, in order to obtain a more representative sample, we must also ensure that we engage with participants through traditional modes, such as paper questionnaires or telephone interviews.
Resuming clinic – Insight46
Insight46 was due to finish Wave 2 of data collection in June 2020, but we decided to halt clinic visits ahead of the lockdown as a precaution. In spite of the disappointing news, there was a general feeling of relief from the study members, who, like the rest of us, were at that time uncertain of the risks of the virus and had concerns about travelling into London where the clinic is situated. Although we have been unable to collect any new data, the team has been busy analysing the existing data, publishing 6 new papers. As lockdown restrictions began to ease, the team started to figure out how to restart face-to-face data collection in a COVID-secure manner. The overarching principle has been to ensure the safety of study members and the research team, whilst also ensuring that the highest quality data can be obtained. In order to minimise contact time, the team have developed a blended data collection approach: conducting remote data collection using a virtual platform and inviting participants to London for equipment-specific testing. The response from study members has been extremely positive and supportive, with successful brain imaging scans now starting to be carried out again.
Evidence from Europe indicates the UK is poised for a second peak, the start of which we are already witnessing, and that there is a scientific imperative to continue research to understand the impact on the population now and in the long-term. One of the benefits of well-established studies, such as NSHD and SABRE, is that we can investigate these impacts, not just through questionnaires, but also through in-depth phenotyping. At LHA, we have made enormous headway in adapting our data capture tools to collect online survey data, which we hope we can continue in the future, but must remain cautious in our approach to resuming clinics. The current necessary restrictions limit the clinic capacity – we anticipate that this may be necessary until the pandemic subsides – so the blended clinic approach may be the best balance of maintaining participant safety and enabling grant funded research to continue.
As key stakeholders, study members are important in shaping the way we collect data and it is therefore imperative that we continue to be adaptable and creative, not only in devising acceptable data collections but also in how we engage, consult and communicate with our study members. Of course, this would not have been possible without the research teams, who have adapted to a new way of working, and the invaluable support from our study members that we can continue to understand the impacts of COVID-19.
Andy Wong is the Senior Research Study Manager at the MRC Unit for Lifelong Health and Ageing at UCL. His interests are in cohort maintenance and survey management, with a particular focus on data linkage and biological sampling. Further information on how to apply for NSHD data can be found at: https://skylark.ucl.ac.uk/