Best Practices

A top reason for health research study termination is the failure to recruit participants. Studies should take into consideration a participant or community’s beliefs, values and cultural norms in order to develop relevant and responsive recruitment tactics.

Traditionally, we tap into communities to fulfill research needs without ensuring we are fulfilling community needs. We can flip the script by first getting out into the communities in which we seek to recruit from and learn about their real-world challenges and issues that the research may help to address.

This can lead to more meaningful and responsive research and can enhance recruitment efforts. Reach out to the Community Health Equity & Engagement in Research (CHEER) team to build connections and elevate voices within your target population.

Potential barriers to participation 

• Transportation
• Language/health literacy
• Mistrust of medical research
• Limited availability for study visits 

Cultural or emotional factors 

• What are the cultural beliefs or values of your intended participants that may impact how you approach them for research?
• What are the motivating factors to participate in a research study?
• Have your potential participants recently been diagnosed with a condition?

Opportunities beyond current research study 

If potential participants don’t meet eligibility criteria for your study, could you try to match them to another study that your team or a colleague is conducting? Consider referring them to Studyfinder.psu.edu for additional research opportunities.

A recent survey found (Wahlstrom-Edwards and Hess, 2019):

• 75% reported that the major reason or one of the major reasons they joined the clinical trial was to help future patients.
• 69% said they participated to improve their quality of life.
• 63% indicated they were highly motivated to participate in order to receive the best care possible.

Now that you know who your potential participants are, you should be meeting them where they are. Take those considerations and move forward with a recruitment strategy.

Use methods that will work with your study population 

For example, did you know that older adults are an increasing demographic on Facebook? Or that a trusted institutional logo is more effective than a catchy study name? Work with your college’s marketing and communications team for current marketing trends that can optimize your recruitment strategy. 

Realistic goal setting 

Forecasting recruitment milestones based on historical data (marketing data) will ensure you are not over or under-estimating the feasibility of reaching your recruitment goals. College of Medicine research teams are encouraged to connect with the college Office of Strategic Marketing and Communications early in the planning stages of a research project to develop an appropriate recruitment plan and allocate sufficient funds to cover recruitment expenses. Research teams outside of the College of Medicine should contact ctsi@pennstatehealth.psu.edu with questions about recruitment strategies.

Effective recruitment campaigns target the right audience with the right message. Tailor your communication materials to your study population. This includes both the photos you are using and the language you are using. It’s important to keep study materials to a middle-school reading level. You can upload your recruitment materials to a readability website here.

What action do you want your audience to take? This is a “call to action.” Do you want them to complete a survey? Do you want them to call the study team? Make sure the next steps are clear.

The study title and description are the first items a potential participant will read. They introduce a complex research study to the reader, who may not fully understand the technical nature of the study. Aim to keep both items direct and concise.

Which of the following study titles is easier to read?

• “A randomized, double-blind, placebo-controlled, parallel-group, multicenter, event-driven Phase III study to investigate the efficacy and safety of…”
• “A clinical research study to study the efficacy and safety of…”

Both examples could be used to title a study, but the second example is a more lay-friendly and more concise option.

Study descriptions can also become too long. According to the National Institutes of Health’s Plain Language guidelines, a sentence should not exceed around 20 words in length. Use concise language by eliminating unnecessary or redundant words to help decrease the description length.

Research teams can improve their recruitment message by writing a succinct title and aiming for five sentences or less in the description. Concise writing has many benefits and is strongly recommended for all patient-facing research literature.

There is a short window to attract a potential volunteer’s attention. There is an even shorter time to hold their attention. When writing study details, it is important to consider the audience.

• Are you trying to reach parents who have a child or children with a chronic health condition?
• Are you trying to reach older adults who are experiencing joint pain?

How would the study listing differ between these two groups?

Taking a moment to consider the audience will help you craft a more meaningful study listing.

Also consider whether healthy volunteers are needed. Healthy volunteers may be less familiar with specific medical conditions; remember this when writing study details.

The language used is also important to consider in connecting with the audience. The combined language guide offered as a resource on this site could be helpful.

The National Institutes of Health definition of plain language is grammatically correct language that includes complete sentence structure and accurate word usage. Every research team should write their study listing in plain language.

It is important to note that plain language does not mean unprofessional writing, “dumbing down” or “talking down” to the reader. Rather, plain language can help a broader population of potential volunteers understand the initial details of a study and overcome health literacy barriers to participating in clinical research. Aiming for clarity in communication to get your message across is always the best option.

Practical tools for writing a study listing in plain language:

• Spell out an acronym first, then add the acronym in parentheses.
• Include a call-to-action by stating what is wanted of volunteers in the first sentence.
• Avoid technical or scientific jargon.
• Use personal and inclusive pronouns like I, you, we, they or theirs.
• Use positive instead of negative words.
• Use only active voice.
• Break up blocks of descriptive text.

Several online tools can help identify areas for improvement. Websites like Readable or VisibleThread offer free versions that analyze and grade content immediately. This plain language medical dictionary may also be a resource to help describe medical terminology.

Check out the National Institutes of Health Plain Language Initiative for additional resources, including the guide, “Plain Language: Getting Started or Brushing Up.”

Participants often want to know if compensation for time and effort will be provided. The amount and schedule of compensation must be approved by the IRB and cannot be emphasized in recruitment materials but may be indicated.

When you’re recruiting from a large population, it is possible to have many inquiries from participants who are ineligible. This can cause additional administrative work for research teams and can be frustrating for potential study participants if they’ve invested time to inquire about the study and realize they do not qualify. Staff can avoid this extra work by creating an IRB-approved REDCap pre-screener survey that asks direct questions about a potential volunteers’ eligibility for the study.

If the data to be collected via a screening survey will solely be used to determine eligibility and will not be stored for use as research data, consent is generally not required for this type of activity. However, the HRPP should be consulted if there are questions about whether consent is required for screening activities.

Anticipate general questions from participants. Participants typically want to know details of what will be expected of them during the study. Consider writing the study description with answers to these questions already included.

Some common questions from a potential volunteer may be:

• How much time will I have to invest?
• Where will I have to go?
• What is expected of me?
• Will I qualify to participate in the study?
• Who is doing the research?

This strategy seems obvious, but participants particularly want access to trustworthy staff who can quickly answer questions. Accurate contact information should be included in the listing, as well as any further correspondence with study participants.

For emails, make sure to include a Health System or University email address (@pennstatehealth.psu.edu or @psu.edu). It may be beneficial to have a research team or general staff email account that can be accessed by multiple team members (e.g., researchteam_name@psu.edu). This also helps prevent delays when specific staff members are out of the office.

Confirm that the phone number listed is staffed and that the study contact name is included (both first and last name). This simple step can help potential volunteers overcome barriers to participating in a study.

After a potential volunteer inquires about a study, use this opportunity to further connect with them by answering questions and giving them next steps.

Hold their attention by responding in a professional and clear tone and within 48 hours. Don’t forget to include the study team’s contact information, the study title and a sincere “thank you for your interest.”

Note that the volunteer’s personal information may need to be removed from this correspondence. Contact the HRPP for assistance or questions on these requirements.

Conducting research with participants from rural communities presents unique barriers that reflect many factors. A central precept of research is that it be inclusive so that all population groups will benefit; so, it is important that participants from rural communities be included in research and, thereby, represented in the study results.

Research Related Factors:

• Research is not understood or is misunderstood. Also, there is a lack of appreciation of study benefits.
• There is a perceived research burden and interruption of daily life activities.
• There is a mistrust of the research enterprise and a sense of being in an unfamiliar situation.

Health Related Factors:

• Having multiple comorbidities may make participation difficult.
• Having negative feelings and outlook on life.
• Low literacy rates create communication challenges.

Personal Factors:

• Individuals are unaware of opportunities to participate in research.
• There is a reluctance to engage in self-management behaviors that are important for research participation.
• Unwilling to accept study requirements.
• Lack of resources and support for research participation.
• Multiple demands create time and other constraints for participation.
• Other life issues are of greater importance – employment, housing, food insecurity— that preclude participating in research.
• Transportation obstacles are impediments for research participation.
• For digital communication, access to the internet and connectivity may be insufficient.
• Benefits of study participation are not obvious.

References:

Young L, Barnason S, Do V.  Conducting behavioral intervention research in rural communities:  Barriers and strategies to recruiting and retaining heart failure patients in studies.  Nurs Health Care.  2016:1(1).

Miyamoto S, Henderson S, Young HM, Ward D, Santillan V.  Recruiting rural participants for a telehealth intervention on diabetes self-management.  J Rural Health. 2013;29:69-77.

Morgan LL, Fahs PS, Klesh J.  Barriers to research participation identified by rural people.  J Agric Saf Health. 2005;11:407-414.

Harrington RA, Califf RM, Balamurugan A, Brown N, Benjamin RM, Braund WE, Hipp J, Konig M, Sanchez E, Joynt Maddox KE.  Call to Action: Rural Health: A Presidential Advisory From the American Heart Association and American Stroke Association.  Circulation. 2020;14:e615-e644.

Rural Health Information Hub.  https://www.ruralhealthinfo.org/topics/rural-health-research-assessment-evaluation#planning-and-conducting

Given the importance of studying rural populations, there are demonstrated strategies that are effective in recruiting rural participants. To do this well, takes time and a commitment and a willingness to explore multiple options.

Research Related Factors:

• Build sustainable relationships with recruiter(s) and research teams. It is important to maintain community involvement for future studies, which requires a time investment.
• Use State Cooperative Extension Service to learn about rural communities.
• Build trust by involving community health center workers and community members in the study design, activities and decision-making activities. Use Practice-Based Research Networks (PBRN). PBRNs are networks of local health practitioners with strong ties in rural communities.  Researchers need to find meaningful ways to collaborate with PBRNs. Work with Federally Qualified Health Centers and Rural Health Clinics. Also consider working with community pharmacies and paramedics.
• Obtain provider buy in and engagement in recruitment.
• Understand the previous research that has been conducted in the rural community and how it was received.
• Provide meaningful research incentives.
• Target marketing approaches – mailings, telephone calls, the media and social media – it is important that this is communicated in a way that is understandable. Personal follow-up can be helpful to promote recruitment.
• Communicate at multiple levels – involve the local clinic healthcare personnel and patients. Use telemedicine to network with rural clinics to advertise the study.  Use digital health tools and social media for recruiting.
• Access home-based rehab programs (i.e., cardiac rehab) to deliver study information.
• Access placed-based care (pharmacies, shopping retail areas). Also, access school-based health centers and churches and other faith-based organizations.

Health Related Factors:

• Find study participants who want to take action to stay healthy or improve their health status. Providing education programs about good may incentivize participation in research.
• Learn about the previous experiences of community members with self-care of chronic diseases (and actions taken for prevention of chronic diseases).
• Learn about the community’s beliefs in and practices of lifestyle medicine.
• Learn about the healthcare seeking behavior in the rural community.

Personal Factors:

• Determine whether the presence of support systems are sufficient for research participation.
• Gauge the extent of positive outlook.
• Assess feelings of loneliness.
• Strive to make accessibility convenient and try to provide free transportation.
• Lower the threshold for participant involvement – consider using telehealth interventions.
• Share research findings. Share each participant’s results with them to the extent possible and also share the results of the study and its importance with study participants.

References:

Young L, Barnason S, Do V.  Conducting behavioral intervention research in rural communities:  Barriers and strategies to recruiting and retaining heart failure patients in studies.  Nurs Health Care.  2016:1(1).

Miyamoto S, Henderson S, Young HM, Ward D, Santillan V.  Recruiting rural participants for a telehealth intervention on diabetes self-management.  J Rural Health. 2013;29:69-77.

Morgan LL, Fahs PS, Klesh J.  Barriers to research participation identified by rural people.  J Agric Saf Health. 2005;11:407-414.

Harrington RA, Califf RM, Balamurugan A, Brown N, Benjamin RM, Braund WE, Hipp J, Konig M, Sanchez E, Joynt Maddox KE.  Call to Action: Rural Health: A Presidential Advisory From the American Heart Association and American Stroke Association.  Circulation. 2020;14:e615-e644.

Rural Health Information Hub.  https://www.ruralhealthinfo.org/topics/rural-health-research-assessment-evaluation#planning-and-conducting