1. What made people engage with the testing programme?
Communication Participants emphasised the need for open and transparent communication from programme implementers of the reasons they should register for the programme, how to go about registering and why they should stay registered. They felt these communications should be motivating in content. To do this, they needed to address participants’ sense of community and make clear how easy and convenient the testing regime was for both those who took part and for those who were managing the programmes within their organisations. Parents, school pupils and staff described finding open communication with the programme team reassuring and therefore motivating. This open communication was led by senior representatives of the organisations taking part, who also emphasised preparation, leadership buy-in and using data management systems to scale up as important to the success of the programme within their organisations. Transparent information sharing between the testing team, participants, local and national stakeholders was seen as a strength by programme implementers. Programme communications were also translated into seven languages in Phase II to increase uptake by minority ethnic groups, seen by participants as another strength.
Community Participants’ decisions to take part and engage in the programme were, they felt, influenced by a pull on their sense of community. Participants from schools and GP surgeries felt this pull more strongly than participants from the University. The schools and GP surgeries were smaller, more cohesive organisations, where staff and pupils saw one another every day, spoke about the saliva testing frequently and encouraged one another to take part. This was less evident in the University. Automatic registration of all school students may also have normalised participation in the testing programme, where university students had to make the decision to register as individuals. University students suggested that taking part in the testing programme could be normalised by employing testing champions in their halls and courses to promote the programme and by using an ‘opt-out’ process for participation. School pupils and university students were offered interactive educational activities being run to increase engagement with the testing programme. Those who took part in these activities reported understanding more about the science involved in managing the pandemic, which they felt increased their motivation to protect their communities. Senior school and university representatives appreciated the role that the programme played in connecting senior community stakeholders across Southampton in a way that had not been evident before. Finding common cause through using the Saliva Testing Programme was seen as an unexpected benefit from their involvement.
Convenience Most participants found the programme procedures easy and convenient; registration processes were simple, drop off points were accessible, and testing instructions were clear. It was perceived to be easier to carry out than nasopharyngeal PCR swab tests and test results were received quickly. They felt that making participation as convenient and easy as possible was key to increasing uptake. Parents reported that the test was simple enough for children to take responsibility for carrying out tests independently. From the perspective of the organisations, initial engagement was motivated by the cost-effectiveness of the programme and the value of having data on infection to manage outbreak hotspots by integrating programme data with data from symptomatic PCR testing, to keep the schools, the University and GP practices running.
2. How could engagement with the testing programme be improved?
Building trust A major reason some chose not to take part in the programme was that they did not trust the government with their data. Many of those who declined to take part in the Saliva Testing Programme were anxious about the possibility of losing control of their data when the programme passed them to NHS Test and Trace in the event of a positive test. The local NHS Foundation Trust and its partnership with the University and Southampton City Council, however, was trusted; it was seen to have scientific integrity, and as a local organisation, was felt to be answerable to the Southampton community in a way NHS Test and Trace was not. Some suggested that they would have been more likely to take part if the programme was run solely by local organisations. Participants and decliners were clear that building trust was necessary to improve engagement in the programme. They suggested that this would be helped by receiving more directed information from credible sources such as the university and Southampton City Council about the rationale for and design of the programme, about data protection and the accuracy of the tests, and about the progress of the programme. This information would increase transparency and help dispel myths, particularly about the accuracy of the saliva test. One reason some people declined to take part in the programme was a concern about the personal consequences of a false-positive result.
Extra support for testing positive Those who had experienced a positive test result asked for more efficient data management by the testing programme, NHS Test and Trace and their general practice, and more coordinated messaging. Participants requested more personalised support for those testing positive and having therefore to self-isolate. This included financial aid if unable to work, receiving food and medication supplies and mental health support. Some felt, however, that there were too many support calls from NHS Test and Trace for those testing positive. Participants were particularly worried about the possibility of spreading the virus to others whilst they waited for a test result, and feared the stigma of testing positive, which suggests that they would need reassurance and social support in dealing with a positive test result. Fear of a positive test result was enough to make some decline to take part; they were concerned that if they had to isolate they would lose income, their employer would be unsympathetic and that a history of infection with the virus might affect their ability to get a mortgage and life-insurance. These people preferred not to know their viral status.
Increasing accessibility Both decliners and participants recommended making the programme more inclusive and accessible to a wider group of those eligible to take part. Drop-off points for saliva samples that catered for people living outside Southampton and more frequent, convenient and better sign-posted drop-off points within Southampton would have reduced the distances people had to travel. Some suggested postal deliveries and returns. Comprehensive translation of all programme communications would have increased uptake and engagement of those from minority ethnic communities.
Practical improvements Many improvements suggested by participants were incorporated into the programme as it evolved (see Box 1). A small minority of participants, especially parents of younger children, had issues producing enough saliva, which may have produced an inconclusive result. They suggested the tubes be marked with a clear indicator of the amount necessary. Some decliners missed the University registration email and recommended putting key information highlighted at the top of emails. Senior representatives of organisations involved were clear that the programme gave their staff added responsibilities and added to their workload. Whilst accepting that this extra work was in a good cause, some suggested a ‘toolkit’ of instructions and tips for those implementing the programme to help manage the expectations of both staff and participants.
3. What were the broader consequences for participants of engaging with the testing programme?
Participants reflected on the positive and negative impacts of participating in the testing programme. Positive outcomes included:
Reassurance They generally felt reassured by knowing their viral status and expressed a sense of relief and reduced feelings of anxiety when they tested negative. They appreciated knowing that they were not spreading the virus, felt that this enabled a “near normal” life to continue and were more confident going to school or work and visiting vulnerable family and friends. This was perceived to be an incentive for taking part in the programme.
Pride Participants expressed pride in knowing that they were contributing to a programme that was part of the national effort to manage the pandemic. Some viewed this as a privilege and others were excited. Southampton University students spoke of being envied by those from other universities and felt that the testing programme made the university attractive to prospective students. Senior university representatives spoke of the reputational benefit to the organisation of having provided a testing programme for the local community.
Participants expressed a number of concerns:
Environmental impact Some were concerned about the amount of plastic in testing kits and the environmental impact of an expansion of the testing programme.
Increased chance of infection Concern was expressed about the potential of those who received a negative test result to become less vigilant in applying social-distancing and hygiene measures. They were also worried that the test kit drop-off points were sites of potential infection; prior Health and Safety risk assessments had however ensured that these carried no or minimal risk.
Feelings of anxiety Participants reported feelings of anxiety whilst waiting for their test results, worrying about the personal consequences of having to self-isolate or of having unknowingly passed the virus on to others whilst awaiting their test result. Others were anxious about the possibility of the testing programme ending.
Cultural barriers Some participants were concerned that aspects of culture were a barrier to participation. These included language barriers and a cultural mistrust in central government. Those who had lived in countries where governments were believed to misuse personal data were more anxious about taking part in the Saliva Testing Programme because of the perceived threat to their privacy. Those who needed the testing programme most may in this way have been prevented from taking part.