Abstract
As experienced Lead Clinical Research Nurses with backgrounds in emergency and respiratory medicine, we have had the opportunity to observe the evolving use of social media to spread awareness to both participants and health professionals to engage them in clinical research.
This small qualitative study involving 16 healthy volunteers explores their thoughts and behaviours on the use of social media platforms, particularly in relation to their understanding of clinical research. The study raises the issues of public preconceptions of research engagement on social media and the ethical duty a research nurse has to consider when disseminating sensitive information across these platforms. This includes recognition of the potential negative impacts associated with social media, which can affect people’s mental health.
Using a focus group of healthy volunteers through convenience sampling is perhaps not a true representation of the broader population who might be research participants, as the small sample size and profile does not perhaps reflect the broad cultural diversity and often older age range of patient populations that regularly access healthcare. Evidence suggests that people are more likely to engage in clinical research if they have a strong personal connection with the topic or disease, which was something highlighted as a motivator for one of the participants. It could be argued that healthy volunteers may have preconceptions about clinical research having not been exposed to it in a clinical setting and as a result be sceptical about research participation.
This paper has highlighted the future trend and ever increasing use of social media in clinical research and the opportunities and challenges it brings. Social media can serve as a powerful tool for recruiting participants, reaching diverse populations and those motivated to participate, but who are unsure of how to get involved. Recruitment within research often relies upon a mix of traditional methods and the use of social media; however, traditional methods can be time-consuming and costly, whereas using social media could negate these challenges.
Access to smartphone technology and acceptability of social media platforms are important considerations for healthcare professional and researchers. However, an evaluation of patient acceptability of smartphone technology within our own emergency department (ED) concluded that almost four in five ED patients owned a smartphone and approximately the same number found their use acceptable in healthcare (Summers and Reed, 2018).
The study demonstrated that researchers must approach social media with caution, clearly communicating the purpose, objective and methodology to reassure the public the research is credible avoiding mistrust and the misconceptions that can unfold with an online presence. To navigate this, the paper provides the basis for researchers to tailor their approach in managing how they engage social media in their recruitment campaigns and hopefully instigate further conversation around the use of social media as a recruitment strategy within research.
The paper recognised the lack of regulatory guidance around the use of social media as a recruitment tool. The National Institute for Health Research & Involve (NIHR) produced guidance in 2014 which gave practical advice to researchers, albeit a decade old the guidance is still relevant today (NIHR, 2014). They acknowledge that this is an evolving technology and used very broad descriptors of social media. The authors have explored the experiences and concerns around social media and these would be valuable in contributing to new updated guidance.
The study also showed participants would be more open to participation if it meant they could contribute to and implement change. This emphasises the need for wider dissemination of study results and the impact it has on healthcare outcomes. However, the study drew attention to the risk that disseminating results on social media platforms could be a trigger for participants in an unsupported environment; therefore, researchers have an ethical duty to provide open, accessible communication to support vulnerable groups. To engage patient and public involvement online, the study highlighted the demand for interactive activity, imagery and infographics that appeal to all age groups using different platforms so that it is relevant to them and avoids information overload.
Our view is that the use of social media from a research perspective holds great potential in advancing healthcare knowledge and improving patient outcomes, but it requires careful attention to ethical principles and professional standards.