An email arrived in my inbox recently with this subject line: “New X-Funded Research Opportunity—Looking for Caregivers of Persons With X Disease.” Because I’m in the field of health research I opened the email. Otherwise, it’s highly unlikely that I would have.
The email went on to provide a paragraph of information about the research organization and its mission. It then provided a list of eligibility statements—all formulated as “musts”:
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Catherine Freeland Catherine E.W. Freeland, MPH is Director of Health Research Communications at Vibrent Health, a digital health technology company powering the future of precision medicine. Before joining Vibrent, she spearheaded the communications for the All of Us Research Program in New York City engaging historically underrepresented populations.
- Participants must be
- Participants must have
Then an offer to “read more about the study” and a link which even I, as someone who follows health research, wasn’t compelled to click. What, I wondered, would prompt “caregivers of persons with X disease” to read further? Unfortunately, the language used in this email is all too often the type of language that health researchers use as they attempt to appeal to potential participants in their research efforts. It’s researcher language, not participant language.
Failure to engage means failure to understand
The result of using this kind of approach—whether attempting to communicate via email, social media, or other digital channels—is the failure to engage people in your medical research efforts. This is especially true for marginalized groups who are far too underrepresented in medical research. The consequence is that we fail to understand their health needs and how to provide them with the best care.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
For instance, Patient Engagement HIT recently reported on medical schools’ lack of proper data to address LGBTQ health disparities. AARP has further pointed out that older LGBTQ adults who face chronic illness and other health challenges are even further underrepresented and misunderstood. The pandemic has further brought to light broader communication inequities among marginalized populations—“older, non-White, or uninsured patients were 40 to 60% less likely to use video visits than younger, White, or insured patients” according to The New England Journal of Medicine.
The failure to adequately understand the communication needs and preferences of target populations clearly has the potential to impact the validity and reliability of research efforts, as well as equitable access to care. Taking steps to engage more effectively can lead to more tailored approaches for preventing and treating various conditions.
Understanding the participant point of view
The mandate for clinical researchers is understanding that there have been underrepresented populations in our research for too long—people who have been or have felt excluded and ignored, or who have suffered inequities at the hands of researchers in the past.
To effectively engage with research participants we need to be innovative and invested in thoroughly understanding them, not as members of some target population, but as individuals. That requires humility. We need to approach our potential communities of research participants without preconceived notions or assumptions about them. We need to be culturally competent and sensitive, recognizing and acknowledging what we don’t know.
The greatest challenge for clinical researchers attempting to engage with study participants is that they know too much. They’re far too familiar with the terminology and lingo related to their field of study—so familiar, that they can’t get out of their own heads and, in the process, however inadvertently, turn off or fail to engage potential study participants.
When we communicate with non-clinicians we need to communicate in terms that are understandable and inviting, not clinical and antiseptic. We need to take off our white coats and connect with potential study participants in ways that are meaningful to them—in the language they use and understand. That, of course, requires that we take steps to understand our audience and their point of view.
The same, yet different
Even within audience niches there are distinct differences among participants. These differences are often not acknowledged. We assume that all members of an LGBTQ+ group with Type I diabetes that the concerns will be the same, for instance. Or that all members of a group of parents of children with Down Syndrome will have the same concerns. They aren’t—and they don’t.
Consider that, within the LGBTQ+ segment you may be targeting, there will be Black members, there will be LatinX members, there will be Muslims, Catholics, and Atheists. And there will be other critical distinctions. That level of diversity needs to be understood and considered—and reflected in your communications.
We need to connect with people in specific groups with messages that convey our understanding that they are the same, yet different. In order to form these connections we need to clearly convey what’s in it for them? Why should they engage with us?
What’s in it for them?
Researchers need research participants. But what’s in it for participants? Why should members of a select audience participate in your study? What’s in it for them? It’s all too common for researchers to clearly convey their objectives for conducting a study. It’s less likely that they clearly convey what the study results will mean to participants—how will their lives be affected positively, what will they learn, how will their participation impact others like them?
In addition, participants, almost universally, want to know how their information will be used, who will have access to it, and how their personal information and identities will be protected.
And they want to know the results of the study or research—not years from now, but along the way. If they’re participants, they need to be included. They expect to be. Because so many have often not been—and have shared their experiences with others—reluctance is understandable.
Diverse populations should also be engaged and involved in communicating about the research from the beginning to the end of the process. Consider who was involved in approving the communications used for your last research effort. Were any of these people representatives of your target audience? If not, how can you have confidence that your messaging will resonate with them?
Overcoming communication barriers
Social media is widely used as a communication tool today because so many people are engaged in social media channels. Not all people are engaged, though, and not all are engaged in the same channels. For instance, Pew Research data indicates that adults under 30 most likely to be engaged with Instagram, Snapchat and TikTok, even though YouTube and Facebook are, overall, the most widely used channels. There also are some other important distinctions:
- Hispanic Americans are more likely to use WhatsApp than either Black or White Americans (46%, compared to 23% and 16%, respectively).
- Nextdoor, a relatively new entrant to the social media realm which is a neighborhood-based channel, is more likely to be used by those in urban or suburban areas (17% and 14%) than in rural areas where only 2% are using the site.
If you’re hoping to connect with members of the LGBTQ+ community on many popular social media channels, you may be further challenged. GLAAD’s first Social Media Safety Index (SMSI) gave failing grades to all of the top social media channels including Facebook, Instagram, TikTok, Twitter and YouTube, according to an NBC News report. Instead, researchers interested in connecting with members of the LGBTQ+ community, especially younger members, would likely be better served to engage with them on emerging sites like KeYou.
In addition to usage considerations based on interest and the opportunity to connect with like-minded groups, usage is also impacted by technological barriers. Those in rural areas may not have connectivity issues. Those in socially disadvantaged or lower income settings may not have access to computer or smartphone technology.
For many health researchers, when it comes to engaging with specific audiences, you don’t know what you don’t know. It’s important to take steps to learn. Don’t assume you understand your target audiences. Don’t use your language to engage with them. Connect with them. Learn from them. Involve them in your communication outreach to ensure your language and the communication channels you use to connect are appropriate and appropriately targeted.
Photo: elenabs, Getty Images
Catherine E.W. Freeland, MPH is Director of Health Research Communications at Vibrent Health, a digital health technology company powering the future of precision medicine. Before joining Vibrent, she spearheaded the communications for the All of Us Research Program in New York City engaging historically underrepresented populations.
