Understanding how nurses can effectively utilise social media for increasing public involvement,recruitment and impact dissemination of Clinical Research Trials

Understanding of clinical research

A barrier to public involvement in clinical research is its perception. For example, Gene described: ‘Don’t you think, people think of men in white coats, with rabbits, with cigarettes in their mouths? You know, that’s an image for an awful lot of people’ (Gene, white British, man, 73). Here Gene is conveying a stereotype associated with research which he believes the wider public has. The perceived requirement of knowledge is also expressed when a person thinks of the word ‘research’. Another participant stated that this could also deter people from wanting to get involved: ‘Some people may be put off by the word “research” and might not feel that they are clever enough to get involved, they will think it’s not for them’ (Jane, white British, woman 52). These perceptions are in line with Brown and Cowdery (2021) who examined knowledge and attitudes toward clinical trials and highlighted the need for targeted educational interventions. Therefore, when seeking public involvement, using social media or other traditional means will be influenced by these perceptions.

The language of clinical research is not typically comprehensible to the wider public. As Sandra highlighted ‘I mean just the medical language is confusing for a lot of people. I know doctors are used to, and trained to relate to patients, but if you listen to a medical conversation, it’s crazy’ (Sandra, Black Africa Women, 23). Additionally, misunderstanding through the language used can result in misconceptions as Rita suggested ‘It leaves it open for people to infer it in their own way like there were people saying that there were chips in the vaccines’. (Rita, British Asian, woman, 21). Thus, the perception of clinical research as cryptic, and use of clear and understandable language regardless of education level, needs to be considered. Specifically, where social media brings opportunities to reach and engage with the general public, outreach messages should ideally encourage participants to engage using clear language, free of clinical research jargon.

Diversity of social media users

Different social media platforms have preferences in different population age groups. For example, Sue highlighted ‘My daughter doesn’t put anything on Facebook. . .. I mean she’s in her 30s, so it’s a generational thing because it used to be young people, didn’t it, on Facebook? Now it’s us older people’ (Sue, white British, woman, 67). This reflects recent research indicating patterns of Facebook usage differ across generations across North America and Northern Europe (Gil-Clavel and Zagheni, 2019). The younger participants were more commonly users of platforms such as Snapchat. For example, Sally stated, ‘Snapchat is just for like documenting like my life, so I’ll use that to reach out to my friends and stuff like that’ (Sally, Black British, woman, 23). The participants also described using different social media platforms for different purposes. For example, Paige, described her use of WhatsApp for actively networking ‘I have got lots of group chats, it can be horrendous. So I use that all day throughout the day, every day’ (Paige, white British, woman, 42). Diana described using Twitter for her professional role ‘I don’t often get social stuff from Twitter. It’s more about professional links and professional information and stuff like that’ (Diana, white British, woman 39).

Participants described social media usage in terms of convenience and highlighted feelings they experienced when using the platforms. For example, James stated ‘You get that nice little serotonin boost from seeing funny cat videos or you can communicate with friends’ (James, white British, man, 30). Sandra explained that she became accustomed to using social media when moving to the UK ‘I think coming to England has made me, like, more on social media, before I would never have posted a picture of whatever I’m doing, never’ (Sandra, Black African, women, 23). However, other participants, such as Fred, engage in social media but choose not to share their information ‘I don’t really like sharing things on my page’ (Fred, white British, transgender, 19). This demonstrates that different users engage with platforms in different ways and this needs considering when seeking to use social media to involve the public in research.

As well as using different social media platforms for keeping in touch with family, and friends, and networking professionally, some participants spoke about following celebrities who they viewed as influencers. Rita suggested that researchers could similarly use influencers to promote engagement in research ‘If they can promote something that is actually beneficial to people like research’ (Rita, British Asian, woman, 21). A recent study has examined the role of influencers in the consumer decision-making process and found that the promotion of some products through influencers may be more advantageous than others (Zak and Hasprova, 2020). However, to our knowledge, there are no research studies which have used this approach or examined its feasibility to engage people in clinical research. Paige did highlight that they had seen users from the health sector with a professional profile and that is how they found out certain information about the NHS ‘TikTok, you get a lot of doctors and like nurses, who will have their own public profile and then they’ll share that information out there’ (Paige, white British, women, 42). Therefore, this could potentially be an approach used by research nurses seeking to involve the public. However, further understanding of the impact of this is needed.

Motivators for volunteering

The participants clearly explained what would motivate them to volunteer to participate in clinical research. There was a strong consensus that the participants had to have a personal connection with the subject matter. For example, Catherine stated ‘Unless it actually affects me and I know that sounds quite selfish, but I think, you don’t really need to know’ (Catherine, white British, woman, 55). This personal connection to the cause is evident in the wider literature on motivations for volunteering (MacNeela, 2008). Therefore, research nurses should consider how their messages for recruitment can enhance those personal connections and highlight their relevance to people. In other words, be clear about how their research will impact the target population.

Participants also suggested that volunteering in clinical research should contribute to a feeling of implementing change. For example, Tom pointed out ‘I think a lot of people sometimes sit there and think, oh, I don’t like this, but there’s nothing, I don’t have the power to change it’ if they could get involved and see that their voice does matter and they can change things’ (Tom, white British, man 41). Feelings of empowerment among those who engage in volunteer work are also noted in the literature (Cohen, 2009). Similarly, previous research has highlighted that the main reason individuals participate in clinical research was believed to be altruism, while logistical issues were considered important for those who declined (Newington and Metcalfe, 2014). In other words, the act of kindness, in this case volunteering in research, increases feelings of happiness, optimism and satisfaction. This was also explicitly evident for Daniel ‘So the things that made me engage with it was that it was relevant to me and it felt good to be able to help people who had experienced what I have’ (Daniel, white British, man 35).

Finally, although posting on social media has the potential for a wider reach it also has ethical consequences in that it will also increase the risk of enquiries. Huang et al. (2018) propose an upstream approach to recruitment that has the potential to produce a greater impact and reduce barriers. This might include how those who are motivated to engage but do not meet the eligibility criteria of the study are still able to volunteer. Rita suggested ‘If somebody isn’t eligible maybe they could almost sign up for updates about the trial’ (Rita, British Asian, woman, 21). This highlights the need for research nurses to consider the wider potential of social media users who show motivation to support the implementation of the research process.

Trustworthy

Some participants expressed scepticism about the information they read on social media. Gene highlighted that he had read about corporations’ unethical motivations to fund certain healthcare research ‘One of the latest reports is about the number of pharmaceutical companies that are actually sponsoring health research, you know, for the wrong reasons’ (Gene, white British, man, 73). Indeed, research suggests that trustworthiness is a key predictor of engagement with funders for research (Rowe et al., 2010). Paige also spoke about some people being vulnerable to scams or misinformation ‘My mum is usually really switched on but I think now that she’s getting older she doesn’t always fully read what she is reading and she does sometimes share clickbait’ (Paige, white British, woman, 42). The phenomenon described as ‘clickbait’ is a common feature in news headlines designed to induce anticipation and curiosity, encouraging readers to click on their link to forward the user to their website (Blom and Hansen, 2015). The participant noted they would avoid these types of headlines and has learnt to spot them over time. These approaches might increase reluctance to engage with research advertised on social media, meaning research nurses should ensure that they are explicit in describing who has funded their study and why.

A recent study suggested that health misinformation is prevalent and evident on all social media platforms (Suarez-Lledo and Alvarez-Galvez, 2021). Sally explained that what makes it additionally difficult is determining how far from the truth the information is ‘So, like it’s knowing how much of that is truthful versus if it’s exaggerated or not. And there’s like pretty bad stigmas and like stereotype as well, so you’ve got to be careful of those’ (Sally, Black British, woman, 23). This is in line with a wider study which revealed that user engagement increased significantly as the level of fear-arousing sensationalism increased (Ali et al., 2019). Therefore, research nurses must ensure information designed to engage the public needs to be unbiased and factual. Additionally, headlines used to engage should not be misleading. However, because of the potential value in designing information which can stimulate and increase user engagement on social media, the role of ethics committees should be aware of their role in safeguarding from these issues. Additionally, further research is needed to understand the susceptibility of this on users.

Information overload

Participants defined what types of information they were more drawn to on social media, and likewise what type of information they did not see as necessary. For example, Sue stated, ‘I think also we are bombarded with messages that I get to the point where I just switch off. Well, I’d get them I just ignore all messages’ (Sue, white British, woman, 67). Diana also highlighted that there are users who may not know how to navigate the extensive different information they receive on social media ‘You get those who aren’t as comfortable with social media or don’t know how to find and filter out information that they want to get to. So, they’ll just get a bunch of random information, and then before they get to yours, they’re already out of it and they’re like I don’t care anymore’ (Diana, white British, woman 39). It is therefore important that a clear strategy for the dissemination of information is planned to ensure the most relevant information can reach the right population group.

Ann conveyed that her social media platform of choice, Instagram, relies more on imagery (photos) and therefore she stated that she would prefer not to read official statements on there from organisations such as the NHS ‘I wouldn’t read lots of text on Instagram. It’s very visual. So, if there was like an official statement from, say, the NHS, I wouldn’t expect to read that on Instagram’ (Ann, white British, woman, 32). However, Fred suggested displaying information in segments to avoid information overload on Instagram. Fred pointed out ‘Yes, give the information like slowly so you can swipe across and there is more, and then gradually just give the information. And link out to the full information’ (Fred, white British, transgender, 19). Here there is an expressed need to have options to seek further information once they have decided if it is relevant to them. Social media allows users to scroll through information quickly and therefore users can instantly determine whether they want to continue reading the information which is presented to them. It is therefore important to thoroughly consider the key information needed to convey the research, without causing information overload.

Motivations for users to share information

Viral marketing is a marketing form that contacts users, in particular, through word of mouth on the Internet (Krishnan et al., 2022). This is relevant for social media networks which prioritise shared content among friends and family compared to companies and organisations. This is important to consider in the dissemination of clinical research. The participants expressed different ways in which they shared information they found and hence contributed to its circulation. For example, on how often they tag (link their username) other individuals to highlight the social media post to them. Sally highlighted ‘On Instagram, you can tag a post, and then people find tags, and then they can find your post and like it’ (Sally, Black British, woman, 23). Research highlights factors underlying motivation to share information on social media, such as social currency, triggers and high arousal of emotion (Pressgrove et al., 2018). Rita also suggested that social posts containing ‘memes’ are more likely to be shared when using a close-up scale, contain characters, and include positive or negative emotions. ‘Good funny videos, they have a meaning and explain something. It’s quite creative. So, they find ways to kind of share what they want to share’ (Rita, British Asian, woman, 21).

Participants also recognised that the number of comments a post accumulates can also increase the chances of its visibility. However, this can work for both misleading and informative information. Ann highlighted this when talking about information they trust as to its accuracy ‘It almost reinforces the fact that it’s nonsense because the more comments there are the more it gets shared, and it gets even more ridiculous’ (Ann, white British, woman, 32). Therefore, when using social media for dissemination, it is important to recognise that there is a need for an official website with all the information about the clinical trial. This is particularly important in light of the unpredictability of how the information can be shared and the risk that the information can evolve into misinformation which was seen during the COVID-19 pandemic (Siddiqui et al., 2020; Skafle et al., 2022).

Finally, Gene expressed that there is a lot of negative information on social media that often affects their mental health ‘There are positive or negative and if there is so much of the negative than it starts affecting your mind’ (Gene, white British, man, 73). This highlights the ethical duty of clinical researchers here to consider the negative impact that disseminating the results of a research study on social media may have on the user’s mental health. This is particularly important if the research topic would be deemed sensitive or triggering.