The following blog is the first in a series of ‘Research Reflections’ from Healthwatch Essex Research Team. The reflections that formulate this blog are those of Francesca Govia, who has been taking part in a 15-week part-time research placement with us…
Having been asked to research and plan the content of a short video that raises the awareness of annual health checks for individuals with learning disabilities this project required recruiting human participants. As with any research project involving human participants, more so than ever in the current climate, moral and ethical points of consideration have arisen throughout the process.
There are many advantages to short-term research projects, especially in relation to responding to current issues. For example, the annual health check project is occurring at a time when raising awareness of such checks is vital; the health inequalities faced by individuals with learning disabilities have been exacerbated by the Covid-19 pandemic. With findings from the first wave of the pandemic suggesting mortality rates from Covid-19 are increased for those with a learning disability, creating an awareness video in a short timeframe to encourage individuals to attend, or request, their health check could go some way into easing the risk of complications caused by preventable or underlying health conditions.
Ensuring that individuals with a lived experience of learning disabilities featured in this awareness video, alongside professionals with a vested interest in annual health checks, became a central feature of the recruitment process of this project. The recruiting process of those in the inclusion criteria came with its own moral considerations, especially within the present environment.
With the placement being short-term it was understood that the project would require access to existing contacts already established by individuals employed within the organisation to recruit participants, whilst also seeking to build new networks. Morally, attempting to utilise other’s networks has felt complex. When approaching organisations who had previously acted as ‘gatekeepers’ for other Healthwatch Essex workstreams, this project was relying on the trusting relationships others had developed and maintained over a longer period of time to support these new connections- as a researcher external to both organisations it can feel exploitative to be an outsider briefly dropping in to utilise these networks without being able to build an equivalent level of trust and rapport. Though these feelings may always arise in conventional short-term research projects, the current climate heightens these anxieties, and upon reflection it may have been beneficial for the project to be co-led within an additional internal researcher who already works closely with those being approached.
Many organisations are willing to help in any way they can with projects that would provide long-term benefits to their beneficiaries. Yet, when organisations are in the process of adapting to largely online services or working with a reduced staff base, requests to help recruit participants have to be made in ways that recognise the additional workload now also being proposed to them. To not do so would undermine the realities of the present situation, and risk contributing to pandemic related burnout, yet to abandon recruitment completely would prevent vital projects taking place.
By extension, these considerations must of course also filter down to the participants being recruited, as must the moral implications of planning recruitment online. When seeking to recruit individuals with learning disabilities, not only do the same concerns surrounding the short-term nature of the relationship building need addressing, but so do the implications of running a predominantly online based project.
With a government enforced lockdown in place, face-to-face interviews and filming are not presently a viable, or indeed ethically appropriate, option. Undoubtedly, these limitations mean the inclusivity of a person-centred project becomes a further point of consideration. In this instance, there becomes a risk that those without access to online equipment could become marginalised within the research. In an attempt to mitigate these risks, contingency plans such as utilising different methods of data collection could be developed to ensure the relevant voices still shape and inform the final project output even if they do not feature directly in it.
Though accessing online platforms was predicted to be less of a concern for recruiting individuals with a perceived professional interest in health checks, other moral considerations arose with regards to accessing individuals within frontline services when it is known that services such as the NHS are stretched.
Among the professional voices the project hoped to capture, the voices of those delivering health checks were also felt to be central to this project. Including the voices of those delivering annual health checks directly would ensure that the information included in the final video would accurately reflect the checks taking place at present. In order to target a section of the project’s recruitment process to the GP practices providing annual health checks, a freedom of information request was sent to a local commissioning group regarding the number of GP practices offering annual health checks within a set area.
It was hoped that the information gained from this would allow the project to target appropriate practices only and avoid asking stretched practices to respond to a participation request not relevant to them. Unfortunately, the response suggested that although all GP practices are encouraged to offer the checks, the only way in which to gain an insight into which practices are currently offering them would be to contact each one individually – on a part-time, time-limited project this is not a viable option and by consequence the recruitment of such individuals has been limited. The consideration of how best to approach and include such voices remains ongoing.
As the annual health check project develops, changes in the current climate are inevitably also going to continue. It is hoped that being aware of the moral implications of conducting time-restricted person-centred research will ensure that the project remains as inclusive and sensitive to the needs and environments of any recruited participants.