To Recruit Diverse Research Participants, Get Out of the Clinic and into Your Community - Vibrent
Blog | March 31, 2022

To Recruit Diverse Research Participants, Get Out of the Clinic and into Your Community

By Aisha Montgomery, M.D., MPH, Senior Research Manager

Most research studies are performed in clinic-based academic medical center facilities. Centralizing resources – technology, laboratory facilities, and skilled clinical staff – is what has propelled our scientific research forward to the incredible knowledge we possess today. 

However, researchers often struggle to think “outside the lab.” That is, we often do not design our research studies purposefully to reach everyone. We are conditioned to hit research enrollment milestones the easiest way we can – so we design research protocols for the patients we see the most. This historically has led to study cohorts primarily made up of white males with the flexibility and resources to attend clinical appointments on a standard M-F, 9-5 schedule. 

We should be very uncomfortable reporting results from cohorts that do not represent the real diversity of our population and entire community. 

We have the skills and tools we need to perform research that represents our diverse society. We can make intentional changes today to make inclusive research the status quo.  

Emerging community-based research in underrepresented populations shows that we can successfully enroll and retain 70% of participants. So, we must ask ourselves: “why has research remained homogenous when our communities are not?” 

Recruiting diverse participant populations requires you to get your research out of the clinic and into the community.  

It’s exciting to see how many researchers and organizations are talking about the need to recruit and engage people of color, women, and other groups that have been underrepresented in research to date.  

However, it’s critical that we now move from just talking and start taking steps towards change. I’ll share 5 strategies for recruiting and retaining diverse populations for your research programs. 

Strategy 1: Design your program with diversity in mind.  

As researchers, we must prioritize study design to specify how many participants in underrepresented groups you want to include and why.  

But we’re up against a justified, long-standing mistrust of the research industry. As an African American female physician researcher, I have personally experienced African Americans being unwilling to talk to me because of this mistrust. This same hesitance exists in many underrepresented communities. So how can we win? 

Programs that succeed in recruiting diverse research cohorts are doing several things right: 

  • They work to recruit a diverse research team and support staff whenever possible.  
  • They openly acknowledge that some people of color feel they’re part of an experiment, not important research. And they work to combat that impression in every interaction. 
  • They provide open and transparent access to the public about each research program they’re running.  
  • They emphasize the value of the research to the participant in understandable and personable language (more on this below). 

And possibly most important, they take a thoughtful approach to creating their study’s marketing materials. 

Strategy 2: Create study materials that reflect a diverse population. 

When it comes to preparing the tools and materials for the research study, most researchers are focused on “speed to market.” In other words, with the sheer volume of effort to begin the study, preparing materials can become no more than a task to complete, rather than an exercise in understanding your participants. 

This goes far beyond simply choosing different photos. In a recent blog, by my colleague Catherine Freeland described thorough areas to examine to support diverse participant populations. 

She goes into depth about things that include: 

  • Translating best practices 
  • Readability (especially for non-native English speakers) 
  • Imagery across digital and non-digital resources 
  • Equity and status in imagery 
  • Socio-economic inclusivity 
  • Accessibility of your materials 

And one of the most important things you can do – get input from people in your community who come from the groups you most want to reach. 

Strategy 3: Get out of the clinic and into the community. 

It shouldn’t be a surprise to hear that our health system doesn’t work well for everyone. At best, some groups don’t see others in their circles or communities engaging with health professionals. At worst, they have limited access or a genuine mistrust of the healthcare industry. For many of these individuals, the Emergency Room becomes their doctor. This is well-documented in the literature along with various reasons why.  

I have personally had many people say things like, “I’m interested in your program, but I can’t take off work to come to your clinic,” or “I need transportation, do you provide that?” 

We will not reach these participants in a central clinic, but we must realize that they are worth reaching. Even more importantly, they can become powerful word-of-mouth recruiters for our research programs. 

Make sure you prioritize resources for community outreach and recruitment.  

  • Stage your health fairs in places where the community is already available. 
  • Partner with community churches or temples to provide education on assembly days and do it more than once. 
  • Bring your fliers and make sure you include non-digital ways for the community to respond. 
  • Don’t take your fliers when you pack up – make sure some are hung or left behind. 

Give the community access to ask the questions and seek out the answers they need. 

To retain your cohorts more effectively, put the participants’ experience at the forefront. 

Strategy 4: Craft a clear and relevant message that describes why individuals should participate in your research. 

Sometimes, to keep participants in a program, researchers must excel at helping people to stay engaged once they are enrolled in the program. 

Creating this message is so important because it also helps you and your research staff to think about the participants and why the research should matter to them, especially if it is a long-term program. 

Outline the benefits to the participant today. Are there any data that they are receiving in the program that they do not otherwise have access to? Are the tests you are providing an opportunity for participants to make better decisions from expensive analysis that is otherwise cost-prohibitive? Could they learn more about their health by joining the program? I have seen research participants value this so much that they recruit relatives and friends into studies. 

Remind participants of the value of their health. Are you researching a chronic disease? Often, society normalizes common diseases in a way that makes people feel bound to struggle with disease complications for the rest of their life. We must re-establish what health and quality of life truly are. The goal of research should be to improve disease prevention and management and research participants are the key to accomplishing that. 

Outline the benefits to their community in the future. Make the outcomes you are striving for real – could this benefit your participants’ directly? Their children or other family members? Their specific demographic community at large? Be honest and clear in communicating the goals of the research to the participants.  

Find ways to express gratitude as a part of the message. We need to find ways to thank people and demonstrate the value of what their time sacrifice means. Dedicating a part of your funding to providing a small thank you for your participants’ time and information. A small item or gift card for compensation during study milestones can make a difference in a participant’s life. 

Gather feedback from participants – when they enroll and even if they drop out. In every program I’ve run, I’ve included a satisfaction survey. Learn from the participants’ experience and make changes, when possible, to reduce the participant burden. 

And remember that the way you deliver the message matters as much – possibly more – than the message itself. 

Strategy 5: Participants remain in research programs more often when they have a relationship. Build a relationship by being available. 

There’s a proliferation of smartphones and other technology in affluent circles today. Often, because we use cutting edge devices and systems in our daily lives as researchers, we assume that we can reach everyone in this same way. When we need to educate the community, we say, “if we create a video for this, everyone will understand.” This is not always true. 

Consider who uses technology, and how they use it. There are a lot of people in underrepresented communities who do not have access to our digital events, our videos, our website, or our programs at all because they don’t have a smart phone. Others are simply not used to using their smartphones to engage the way we would like them to. Some don’t have a computer, or broadband internet access. 

But that doesn’t mean that we can’t use technology to reach these individuals or scale our communications with them. We must focus on how to reach those in our community for whom technology is not accessible – and then determine how technology can scale our efforts. It is also important to make sure that we continue to use technology more personably. 

I’ve seen some effective tools that are not digital but enabled by technology. One is SMS messaging. 

More than 70% of all Black and English-speaking Latino mobile phone users use text messaging. This is a powerful opportunity for us to do things like: 

  • Communicate milestones of a research program 
  • Remind or nudge participants to take some sort of action in a personalized and tailored way 
  • Host “office hours” – times where you ask SMS users to text in questions so you can respond to them and gather feedback 

Another is the phone. Many of Vibrent Health’s clients use computer assisted telephone interviews (CATI) to improve data collection and relationships. 

Using CATI, research staff can access only a limited portion of a participant’s record during a telephone interview. They use their own login credentials and must secure permission from the participants. 

The National Institutes of Health All of Us Research Program is an amazing example. They’ve used CATI to complete over: 

  • 12,000 CATI sessions, and  
  • 18,000 survey completions. 

Of those sessions, NIH staff conducted 93 percent of them with participants in under-represented groups. Additionally, 25 percent of these CATI sessions were in Spanish. 

Both methods are offline – but enabled by digital tools. More importantly, the foundational reasoning behind both is to meet the participants where they are. Make it easy and convenient for participants to communicate with the research team. This personal interaction makes it more likely they’ll remain in the research program. 

And so, you also must consider that there are some things you can and should do for your community that technology won’t be able to scale but will make a difference. Things like: 

  • Providing evening office hours and weekend appointments that working parents or those using public transportation can make. 
  • Providing transportation or mobile data collection for those who may not have reliable transportation of their own. 
  • Consider dressing down – that is, choosing non-clinical attire for participant facing activities. 
  • Remind participants that they can help regardless of whether they participate through your digital tools, or through offline channels. Some of your most passionate advocates may not know how to use a computer but will provide you with all the requested information in a face-to-face meeting or a CATI phone call. 
  • Ask participants what barriers makes it hard to keep participating. Find out if there is some level of support your research team can provide that will keep them – and likely others – in the research program. 

Never underestimate the power of word-of-mouth as a recruitment tool. How can the research team help participants to recruit others? By building relationships, fostering positive experiences, and empowering participants to see their value in research, they in turn will tell others about the program.  

As a researcher, you need to create the right screening tools to appeal to your target population. You must also make those tools accessible. For example, if you want to reach people for a blood pressure study – you offer free BP screening at a local community event to open the door. 

You must get out into the community, to get the best picture of what the research means to them. This requires a relationship. 

Succeed in Reaching a Diverse Research Participant Population

Researchers spend our days poring over data and looking for patterns, but we must remember that these data points ultimately represent human lives. And every person is important – and many have been overlooked. We can no longer be satisfied with only including people whom we can access through EHR data. Diversity in research requires us to take that extra step outside of our comfort zones to reach those who enter the doors of the healthcare system less often. Our reliance on clinic-based research methods has excluded so many for too long. We know that reaching underrepresented populations is possible and important. We have the knowledge and tools to change that.  

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