14 July 2021

Cut off, cut out? How a healthcare research project has cast light on digital inequalities

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COVID-19 and digital inequalities

The COVID-19 pandemic has both brought pre-existing health and social inequalities within UK society into sharper focus and created deeper divides. Poorer people are disproportionately affected by exposure to the virus and the consequences of infection. Further, the obligatory shift to virtual spaces has created concerns that those with no or limited access to digital resources may become increasingly excluded from health and social landscapes.

Digital inequalities, while previously perhaps less evident than health and social inequalities, are becoming an increasingly visible and significant part of the fabric of deprivation. In a pandemic, with social distancing guidance and periodic lockdowns, such inequalities constrain access to the essential facets of human life: social contact, health services, education, welfare benefit applications, work and information. The full extent of the consequences of exclusion from these critical areas of life is yet to unfold.

Though a less everyday experience, another aspect of life that is affected by digital inequalities is participation in social research. As Nind et al. (2021) pointed out in their recent rapid review, researchers across the globe have had to adapt their recruitment and data collection methods to adhere to stay-at-home and social distancing imperatives, largely transitioning from face-to-face research encounters to remote methods such as telephone calls or videoconferencing. For participants with ready access to digital resources, with an email address, laptops, wifi or mobile phones, this could present some challenge but be relatively unproblematic. Yet those with limited or no access to digital resources, digital exclusion from research – the lack of capability to contribute their experiences to the development and dissemination of knowledge - represents another form of marginalisation.

People who’ve lived in prison and the ‘Qual-P’ project

Qual-P is a study of the quality of prison healthcare led by the University of Leeds. As part of this research we interviewed prison healthcare staff and people who’ve lived in prison about their experiences of the delivery or receipt of healthcare in the prison setting. The project was originally conceived in 2017, and our recruitment strategy planned well before the onset of the pandemic. Mindful of the multiple and compounding disadvantage experienced by many people who’ve lived in prison, including digital inequalities, we had planned to recruit and interview people about their prison healthcare experiences face-to-face. This approach relied upon relational groundwork, that is, spending time at various community-based services that people who’ve been in prison might use such as approved premises, substance use recovery houses and charitable support services. Becoming familiar faces at these services, we hoped, would serve the dual purpose of facilitating the development of rapport with participants prior to the interview taking place, and minimising recruitment burden for busy service staff. Additionally, we could ensure that participants received project documentation, and that we could arrange for interviews to be undertaken in a private room.

Impact of COVID-19 on Qual-P

Recruitment for the study began at the end of 2019, and our planned strategy was successfully implemented in the early stages. However, the onset of the COVID-19 pandemic meant that from March 2020, face-to-face recruitment and data collection was no longer possible. Further, Her Majesty’s Prison and Probation Service suspended ethical approval for all studies for four months in 2020.

When we were able to recommence, we were obliged to employ remote methods. The fact that we were simultaneously engaging healthcare staff for the study threw into sharp relief the issue of digital inequalities; although staff were facing additional pressures from providing healthcare in a pandemic, emailing project information and arranging telephone or video interviews was relatively straightforward. In contrast, engaging people who’d been in prison, some of whom had no email to send documents to, or no access to a mobile phone, required a greater reliance on service staff than we had originally intended. Naturally we were concerned that our sample would become skewed in favour of those with access to digital resources, and endeavoured to counter this by working with agencies to negotiate access to agency landlines for those without phones. In addition, we worked with a Patient and Public Involvement representative with a wide network of local contacts. Although he was willing to loan an iPad to participants for a video interview, the risk of viral transmission precluded that option.

Engaging agencies to assist with recruitment was in itself challenging due to the unprecedented pressures on service delivery they were facing. Assistance from project team members was crucial in making connections to enable us to continue data collection, and we are grateful to all those who supported us. However, there are issues with reliance on others for recruitment. Firstly, there is little or no control over who is approached for the study. Secondly, although all of the participants had been verbally informed about the study in advance of the interview, few had been passed the project documentation that had been emailed to the agency. Reviewing the project information sheet, consent form and privacy information during the call was time-consuming and potentially fatiguing for the participant. Thirdly, where individuals were using a landline in the agency, privacy could not be assumed, and needed to be negotiated in advance. Interestingly, privacy seemed much more of a concern to the researchers than some of the participants, perhaps so accustomed to having privacy invaded that it was deemed less important. 

Although it may not have been their preference pre-pandemic, many researchers have found the switch to remote recruitment and data collection methods to be a convenient, efficient and cost-effective alternative to face-to-face research. With ongoing uncertainty about the levels and nature of face-to-face contact permissible, and government guidance inconstant, much research now in the planning stages is likely to embrace remote methods as the primary, if not sole, means of recruitment and data collection. However, we need to consider the potential impact of digital inequalities when developing strategies and ensure that we do not exclude people without access to digital resources.

Acknowledgement: We would like to thank all the participants who gave their time to be interviewed for Qual-P, and all the project team members for their support.

Biography: Sue, Krysia and Laura are researchers working on Qual-P, a project exploring the quality of prison healthcare through interviews with people who’ve been in prison and prison healthcare staff and analysis of patient healthcare records. For more information, contact s.bellass@leeds.ac.uk, visit our website https://qual-p.org or follow us on Twitter @Qual_P.

Disclaimer: This study is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Programme (reference number: HS&DR 17/05/26). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

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