Abstract
Background:
Though clinical researchers have begun to use social media platforms to recruit participants, social media influencers are innovative community connectors to further expand recruitment reach, especially in hard-to-reach populations.
Objectives:
The purpose of this methods paper is to provide a step-by-step guide for engaging social media influencers for virtual participant recruitment.
Methods:
There are multiple steps for researchers to follow, including pre-planning, IRB approval, engaging with influencers, the pitch, the post, and results dissemination.
Discussion:
Engaging social media influencers to recruit for clinical research demonstrates great potential to increase access to hard-to-reach populations. Several methodological considerations remain and this paper shares both opportunities and challenges to guide researchers in this technique.
Keywords: Recruitment, Patient Selection, Social Media, Research Design
Clinical researchers have often struggled with recruiting hard–to–reach populations. Recently, the use of social media platforms has expanded global avenues to target populations that have been historically challenging to recruit for research. With steady growth in the adoption of social media, it remains a growing area of interest for recruitment (Perrin & Anderson, 2019). A number of clinical studies have begun to use social media ads or posts for all or part of their recruitment, with reports of varying success (Darmawan et al., 2020; Topolovec-Vranic & Natarajan, 2016). However, there remains an untapped resource for community connections within the virtual landscape: social media influencers.
This paper provides a step-by-step methodological guide for engaging social media influencers in pursuit of reaching recruitment goals. The social media landscape continues to evolve; even seemingly innovative approaches continue to need to be agile and adapt to the ever-changing world. Historically, marketers have leveraged influencers to expand the reach of brands, particularly when trying to target very specific groups. Arguably, companies not using influencers to advance the effect of their advertising could be considered outdated. In this way, marketing and consumer research is advanced in comparison to clinical and health-related researchers who still rely on outdated recruitment efforts like fliers with pull tabs, research assistants in waiting rooms, and slow-paced clinician referral. The purpose of this paper is to provide clinical and health-related researchers a set of tools for virtual participant recruitment in hard-to-reach populations.
Thus, this methods article discusses opportunities and challenges when engaging social media influencers to recruit for clinical research studies. What we present here is informed by the insights and experiences we have gleaned from recruiting young adults living with Type 1 diabetes (T1D) and racially and ethnically diverse adults with Type 2 diabetes (T2D). As scholars exploring these emergent social media hubs re-inventing the wheel for each study, we wanted to provide a clear and concise guide. Not only will such a guide serve researchers, but it will also serve to fortify the methodology. We encourage readers of this article to use what follows as a foundation. We argue that these methods can be applied to many hard-to reach-populations, especially during socially distant moments in history, such as the COVID-19 pandemic.
Marketing Research and the Influencer Landscape
As our lives have expanded to include social media, electronic word of mouth marketing has grown to feature prominent people as opinion leaders, who are now referred to as influencers (De Veirman et al., 2017). Social media influencers can be bloggers, experts, and celebrities who have built an audience that follows their created content (Djafarova & Rushworth, 2017). Their audience, on some platforms called followers, look to these influencers for not simply a conferment of information, but also for a personal connection (Morton, 2020). Therein lies the power of this virtual online relationship - where followers experience feelings of intimacy and connection with the stories and experiences shared by an influencer (Hwang & Zhang, 2018). This emotional attachment mirrors real social relationships, such that followers regard influencers recommendations as credible, similar to a trusted friend’s recommendation. The human element of influencer marketing is believed to be the reason why it has been so successful for many brands across many industries. In turn, the influencers are compensated by receiving free products, invitations to exclusive events and/or financial compensation; this quid pro quo relationship is a defining element of the influencer culture (De Veirman et al., 2017).
Recently, clinical researchers have begun to utilize this persuasive power for health interventions, such as promoting flu vaccination and healthy eating (Bonnevie et al., 2020; Folkvord & de Bruijne, 2020; Folkvord et al., 2020). Furthermore, a few researchers have utilized influencers as connectors to specific populations (Hughes, 2018; Litchman et al., 2019). However, for researchers with minimal familiarity of the social media landscape, methods described in research studies may not provide enough information for effective use of these innovative methods. This paper provides details, risks, and opportunities across each step of recruitment using social media influencers.
Methods
There are multiple steps to engage social media influencers to recruit for research studies. Table 1 provides a checklist that condenses all of the points made throughout the article that will bring needed standardization to this method.
Table 1.
Checklist for Engaging Social Media Influencers
| Pre-Planning Stage |
| □ Become familiar with the social media environment |
| □ Engage with the online community; become familiar with the virtual decorum and verbiage |
| □ Begin to identify influencers in the online space |
| □ Consider what role influencers will play in your study |
| □ Build a rapport with your IRB |
| □ Budget planning |
| □ Consider incentives for both participants and influencers, review platform cost structure and plan for the time-intensive nature of this recruitment method |
| IRB Approval Process |
| □ Engage with the IRB around concept, background, and methodology |
| □ Plan to gain feedback from the IRB and address concerns proactively |
| □ Ensure some flexibility in recruitment language |
| □ Determine how communications will be recorded for auditing purposes |
| Engaging with Influencers |
| □ Determine the platform your population uses |
| □ Pinpoint key players through immersive research |
| The Pitch |
| □ Engage with potential influencers using full disclosure and transparency |
| □ Be aware of the labor of an influencer by offering benefits and limiting the burden |
| The Post |
| □ Encourage creativity and originality; consider using images or videos |
| □ Preview creative content, but avoid major editing |
| □ Remember the limits of each platform |
| □ Use hashtags to expand reach |
| □ Encourage influencers to tag friends or organizations within the community |
| □ Closely monitor posts, shares and comments |
| □ Maintain detailed log |
| Results Dissemination |
| □ Determine the best way to share your results with those who helped you along the way |
Note. IRB = Institutional Review Board
The Planning Stage
As a researcher, it is critical to first become familiar with the social media environment; Arigo et al. (2018) has a beginners’ primer of terms, platforms, and social media dynamics. Gaining entry with various online communities sometimes requires researchers to create either a personal account or an account specific to the research project or your research lab on the social media platform under consideration. Becoming familiar with the social media environment ensures the approach you plan to take aligns with your research purpose, design, and questions. There is different decorum, rituals, verbiages, and languages in these virtual communities, platforms, and worlds. Engaging for the first time with a community may feel clumsy or awkward, but with time one will become accustomed to the specific nature of a group. We argue that immersing yourself in the community of interest is vital to this methodology. We encourage you to engage with the community and build those relationships before you submit to IRB to ensure proper preparation, however it is important to note, you should not specifically recruit influencers for your study until you obtain IRB approval.
When designing a study, it is also important to consider budget. This method functions best when incentives for participants and influencers can be offered. Most social media platforms also allow posts and advertisements to be promoted or boosted to targeted audiences. Instagram, for example, allows targeting based on keyword and hashtags. Considering the variability of opportunities across platforms and a review of the cost structure of the platform of interest will likely be necessary.
Engaging influencers can feel like recruiting recruiters as well as participants. This method can be time intensive and requires thorough consideration of involvement level. Questions to parse during the study design phase include: 1) will influencers be sharing content I provide, or given details to make posts on their own?; 2) is my research design participatory and thus require a higher level of involvement by influencers?; and 3) what influencer characteristics appeal most to the study design (e.g. high follower count, overall tone of the account, other offerings made by influencer to audience like giveaways or opportunities, etc.)? After considering these and questions like them, you can build intentionality into your study design. For example, if you want to use a participatory design, it may be beneficial to include a few influencers in the research design process. If this is the case, the influencers would likely need to complete CITI/research ethical training before seeing any data. While using a participatory design is not required to use this recruitment method efficiently, we argue it could increase the social validity of the study as a whole (Seekins & White, 2013).
IRB Approval
Because the method we present here is novel, Institutional Review Board (IRB) approval may take longer than an application with more traditional methods would. IRBs tend to have area-specific perspectives (i.e. academic, health organization, industry). Thus, the range of barriers when attempting IRB approval will differ. During the planning phase, we advise building rapport with the IRB at your institution. Making this contact alerts them to the study concept, background, and methodology, whilst also feeling out their familiarity with the study design. Meeting with the IRB before submitting also allows you to gain feedback and address any potential concerns proactively without losing valuable time from the project timeline.
It is important to note that IRB approval will require not only the approved recruitment language, but also a sample of the language to recruit influencers. With regards to the latter, the IRB application ought to request flexibility in language to cater to each influencer’s brand and audience since the study content will be posted from their individual platforms on social media sites. It is advantageous to have identified key and prospective influencers before beginning a study. Taking this a step further, conferring an initial list of influencers – with varying levels of audience reach – prior to submitting for IRB approval will make tailoring the language to each influencer more manageable. The IRB needs information about the ways in which engagement with influencers will be conversational and require varying messages. Whether through private message or public commenting, there needs to be language on this about engagement via all types of social media in the application. The IRB may also require a statement about how communications will be digitally recorded for auditing purposes. By proactively including a plan for recording engagements that expressly involves non-maleficence, time can be saved.
To reiterate, this recruitment approach requires that flexibility be built into the study design. It is imperative to emphasize how necessary adaptability and flexibility is in social media environments. After writing recruitment content, place the language in several possible images on a single recruitment page labeled, “example recruitment images.” Submit these possibilities to IRB. It needs to be clear to the IRB that influencers you engage with will not have access to the data collected through your study (unless your research design is participatory and includes influencers as research assistants/informants). Make clear in the application that influencers may provide their own creative content and images to stay consistent with their online brand. When writing the recruitment language, incorporating a process to member check the language used to ensure that it is clear to the population you are trying to recruit may be of great value (Caretta, 2016). If member checking is relevant to your study, it will need to be written into the IRB application as well.
Keeping ethical considerations at the forefront, including respect for privacy, transparency as an investigator and respect for persons is vital to this recruitment method. Reviewing recent literature for a thorough discussion of the ethics of using social media and the internet for recruitment (Bender et al., 2017; Franzke et al., 2020; Gelinas et al., 2017) will serve as a great accompaniment to our article here. Issues such as exploitation, diversity, privacy, tokenism, and labor will likely need to be broached in the IRB application.
Find Your Population
One benefit of this recruitment method is it allows for a deeper search of a population of interest. Beginning this process using personal or research project accounts to explore each social media platform is advised. The population of interest may interact on one or many platforms. Potential participants may be using platforms like Facebook, Tik Tok, Parler, WhatsApp, or deep in a subReddit. As stated prior, we encourage researchers to engage with the population of interest directly using full disclosure and transparency. It is important to engage not only your target population for research, but also with the social media navigators. Stakeholders from all angles need to be included, and without this engagement, there remains a risk of paternalism and lack of attention to ethics.
Once the preferred social media platform is identified, begin to pinpoint the key players there. We recommend using hashtags (#) to start. Hashtags precede a word or a phrase and allow users to curate their content as well as make topics searchable. We encourage starting with the condition or experience which you are studying. For example, in our studies we started with #diabetes, #t1d #type1diabetes, and #t2d. From there we learned that our populations were also using hashtags like: #Insulin4all, #DSMA (a weekly twitter chat), #diabeticmom, etcetera. Learn from the real people using those hashtags. Identify the hashtags they are using. Then see which people follow them and see who they follow. Then explore the content that all of these users post. You should expect that you will dig deep, then keep digging and then get a little lost and you should plan to explore rabbit holes. It is important to consider this immersive research to fully understand who is who and what is important. We encourage you to keep extensive notes as you explore. For example, a spreadsheet can be used with links to various social media posts and comments. Such detailed tracking not only makes creating recruitment content easier, but is also useful for data analysis.
Start to pick out the key players and identify users that post about topics related to your research. At this point, it will start to become apparent who the influencers are in your space. Though an influencer can look different on different platforms, common traits of influencers are users that post a lot of content (at least once a week, possibly multiple times a day), have many followers (this can range from a few hundred to millions), and the user actively engages with followers (liking and replying to comments, sharing posts, retweeting). Influencers may have sponsorships, where they promote a specific product or a brand to their followers. Though many platforms have cracked down recently on fake follower and inauthentic engagement, be aware that this exists when considering an influencer. Additionally, it may be helpful to identify what the influencers do outside of their social media presence, such as influencers also studying public health may be motivated to help with research or influencers who work in marketing may be willing to give you guidance to help target your population with greater precision.
Additionally, consider engaging with advocacy and community organizations within your research interest as they may help to identify influencers. Often these organizations have communication streams run by community members who are otherwise quiet in traditional social media spaces. And finally, it is important to always keep in mind who’s voices you are using to amplify the study. Seek out influencers who are racially and ethnically diverse, as well as other underrepresented voices, which can help to mitigate some of the limitations of social media recruitment and increase diverse representation in your sample. It is incumbent upon the researcher to identify and engage with Black, Indigenous, and people of color (BIPOC) who have influence across the social media platform of interest. This form of inclusion is vital to producing a socially valid and just research study. If you struggle with engaging with influencers who are racially and ethnically diverse then consider conducting informal interviews or focus groups to better understand how you can engage with each group.
The Pitch
When considering research design and recruitment processes, we encourage mindfulness around influencer labor and culture. Not only are influencers likely to be already inundated with requests for collaboration from potentially high-paying companies, they are also likely to be overburdened with the labor of being an influencer. Before initiating outreach to anyone, we suggest doing some investigation to ensure it is appropriate to approach them. This suggestion is of utmost importance when the individual is an influencer in chronic illness and disability communities. Some questions to consider when contemplating the appropriateness of outreach are: 1) is this individual experiencing a health crisis right now?; 2) does this influencer’s sole source of income stem from collaborations, or are they working other jobs in addition to this?; and 3) has this individual shared research content before?
After IRB approval is received, the following recommendations will guide the process for making the initial contact with influencers. Figure 1. offers a logic model for making the pitch with points of consideration where applicable. The verbiage examples presented were written in accordance with a number of guidelines; the guidelines are: 1) be brief; 2) personalize your messages; 3) offer something that will directly benefit them, be it payment in the form of cash, gift card, etc. or professional development opportunities; 4) limit the burden of collaboration as much as possible; 5) be prepared with many points of entry for collaboration; and 5) keep micro-influencers in mind, too.
Figure 1.
Logic Model for Making the Pitch to Social Media Influencers
The Post
The influencer’s post should be written entirely by the influencer. As the researcher, encourage creativity and originality. Consider identifying other posts by the influencer that were particularly effective. The influencer’s voice is how they will recruit potential participants. Similar to word of mouth advertising, the influencer’s authenticity enhances trustworthiness and this creative content must be wholly their own.
The influencer should state “approved language in the comments” at the end of the post. This designation allows the IRB approved recruitment language to be separate and distinguishes between the influencer’s authentic voice and the approved language. The influencer’s post serves as the ‘flashing lights’ surrounding the approved recruitment language; drawing attention to and engaging followers while enhancing the credibility of the research project, while the recruitment language conveys the necessary information about the study. It is important to keep the delineation clear between those flashing lights and the approved recruitment language. Some researchers may be cautious about this creative freedom; researchers can ask for a preview of creative content prior to posting, but editing the influencer’s content is complicated because the power of the influencer is in their authenticity and their connection to their followers. We would suggest this preview is simply for offensive or inappropriate content, not micromanaging or editing the content.
When developing the post, remember the limits of the platform, such as Instagram only allows links in users’ bios and Twitter has a 280 character limit. Additionally, posts with images or videos are now the norm and have the potential to enhance engagement with followers. Encourage influencers to use images or video that are inclusive and representative of diverse community perspectives. Assess the accessibility of the text, for example, all capital letters will not work for readers for the blind and consider alt-text for images, which are words in place of an image to assist with screen-reading tools. Hashtags can expand the reach of your content and consider encouraging influencers to tag their friends in the online community with the condition or experience of interest.
Finally, we recommend keeping a log of all posts, shares and comments. If there are any negative or concerning comments, consider notifying the IRB, removing the comment or turning off comments on the post if needed. Be sure to monitor your recruitment numbers to see if certain influencers may have had a larger reach than others. Consider using snowball recruitment by asking those effective influencers if they have recommendations for other influencers with whom to partner for recruitment as well. Also, social media recruitment using incentives for participation in online survey studies have increasingly become the target of bots, which are computer programs that mimic human responses in order to receive an incentive or prize, so it will also be important to use bot detectors in surveys as well as monitor responses closely for any sign of fraudulent activity (Pozzar et al., 2020).
After Study Completion
We believe it is important to share your results with all of the people who helped you recruit. However, this information needs to be communicated in a way that is accessible. For some influencers, sharing the manuscript may be appropriate, but most will need a distillation of your findings. Do not miss out on this major opportunity to get your findings out in a meaningful way. Some researchers may lack the skills in science communication and knowledge translation for this outreach to be effective. We recommend using both text and images to convey results quickly. Finally, consider including influencers as authors on manuscripts or in conference proceedings, if their involvement meets the criteria for authorship, or acknowledging the individual influencers in your manuscripts.
Discussion
It is important to note that all of these recommendations and considerations are dynamic. It remains impossible to predict exactly what the social media landscape will look like in a year from now. There may be entirely different platforms or different players in this virtual world. However, it is very likely that some form of influencer culture will remain, as it is simply an extension of the original word of mouth advertising. Thus it will continue to be important for researchers to stay abreast of changes in social media and continue to work to harness the power of authenticity and persuasion to recruit for research, in particular in hard-to-reach populations.
Challenges
This recruitment method is time intensive, as the process of recruiting the influencers to partner with you can be laborious. The very first challenge is to simply have an influencer read and respond to your message. Most influencers receive a lot of direct messages, often mixed with bothersome spam, making it hard for them to discern that your message may be important. Scan influencers’ different social media platforms, blogs, and personal websites to find alternative communication avenues when necessary. Finally, repeated contact and attention to detail can be critical to engage an influencer. Consider revamping Dillman’s classic approach to the digital age to include a pre-contact, recruitment, and follow-up reminders (Dillman et al., 2014). However, if an influencer communicates they are not interested or have not responded after 3 contacts, offer gratitude and end the conversation.
It can be challenging to persuade influencers that this partnership will benefit them as well. Many influencers are passionate about their own “brand” and may be cautious about posting something that may feel “off-brand” to them. This challenge can be mitigated by ensuring that your pitch involves details of how this partnership will benefit the influencers as well, not simply the small incentive but consider different ways to partner, such as offering to be a guest expert on their podcast or YouTube channel. Many influencers are looking to develop long term connections, not just a single post. Ask the influencer what could help them and what you can do to advance their reach and brand. If it appears an influencer is currently unable to assist you, consider asking if they have any connections or friends that may be interested in partnering. Some influencers may be challenging to engage because of a perceived irrelevance of research. Be prepared to counter this with specific examples of how this particular study could affect the influencer, their friends, and their community.
Limitations
The most substantial limitation of this recruitment approach is the potential for a restricted sample, in that the sample would be limited to participants that have social media accounts and engage with content specific to their medical condition or experience online. Additionally, some social media platforms may have unequal gender distributions in their users, which may not be representative of your population of interest. It remains critical to point out that influencers also may not be representative of a given population because they tend to be heteronormative and relatively able-bodied. Influencers receive an increased position and legitimacy from follower gains and from brands who want representatives who look like them. As a result, influencers tend to conform to normative standards of beauty (e.g., thin, facial symmetry, etc.) and already start in relative positions of power (e.g., white/light skinned, from socio-economically advantageous backgrounds, CIS-gendered). Though this limitation presents a sampling issue, and while researchers can take an intentional approach to outreach (i.e. reaching out to more black, indigenous, and people of color), until the influencer space is more diverse, inclusive, and equitable, this issue will persist. Importantly, as with any social media recruitment, there is no way to calculate non-response statistics.
CONCLUSION
Social media influencers have the potential to expand clinical researchers’ recruitment reach, especially in hard-to-reach populations. However, to ethically ensure success, there remain some important considerations detailed in this methods paper. We hope this step-by-step guide will increase accessibility and acceptability of this innovative method.
Acknowledgement
The authors would like to thank all of the influencers in the diabetes online community for their critical role in our research.
Footnotes
The authors have no conflicts of interest to report.
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