Recruitment of participants into research studies remains a major concern for investigators. Using clinical teams to identify potentially eligible patients can present a significant barrier. To overcome this, we implemented a process for using our patient portal, called MyChart, as a new institutional recruitment option utilizing our electronic health record’s existing functionality.

To streamline the institutional approval process, we established a working group comprised of representatives from human subject protection, information technology, and privacy and vetted our process with many stakeholder groups. Our specific process for study approval is described and started with a consultation with our recruitment and retention function funded through our Clinical and Translational Science Award.

The time from consultation to the first message(s) sent ranged from 84 to 442 days and declined slightly over time. The overall patient response rate to MyChart messages about available research studies was 23% with one third of those saying they were interested in learning more. The response rate for Black and Hispanic patients was about 50% that of White patients.

Many different types of studies from any medical specialty successfully identified interested patients using this option. Study teams needed support in defining appropriate inclusion/exclusion criteria to identify the relevant population in the electronic health records and they needed assistance writing study descriptions in plain language. Using MyChart for recruitment addressed a critical barrier and opened up the opportunity to provide a full recruitment consultation to identify additional recruitment channels the study teams would not have considered otherwise.

Disclosing individual research results to participants is not standard practice. The return of individual research results to participants may increase recruitment, retention, and engagement in research. This study’s objective was to explore the preferences, expectations, and experiences of research participants receiving individual research results.

A mixed-methods approach, consisting of semi-structured interviews and a health literacy assessment, was used with participants enrolled in a cohort study. The interviews were analyzed to produce an understanding of current experiences. Using descriptive analyses, responses were compared to identify alignments and divergences among participants.

Forty-three English-speaking and 16 Spanish-speaking participants enrolled. Ninety-eight percent of participants wanted to receive their individual research results. Seventy-five percent of participants reported they shared results with their healthcare providers. More participants aged 18–65 reported the need to follow up with their provider (70%) as compared to participants > 65 (20%). Two-thirds of participants reported a positive experience receiving their research results; however, 22% reported anxiety and worry. Most participants (69%) described the electronic medical record (EMR) as their preferred method for receiving their results. Yet only 50% of Spanish speakers preferred receiving research results through the EMR compared to 77% of English speakers. Participants with low health literacy preferred receiving study results in person or by phone.

Research participants value receiving their individual research results, and this may increase recruitment and retention within the research enterprise. While more research is needed, the lessons learned from this study lay the groundwork for developing best practices and policies around the return of individual research results.

Clinical research trials rely on informed consent forms (ICFs) to explain all aspects of the study to potential participants. Despite efforts to ensure the readability of ICFs, concerns about their complexity and participant understanding persist. There is a noted gap between Institutional Review Board (IRB) standards and the actual readability levels of ICFs, which often exceed the recommended 8th-grade reading level. This study evaluates the readability of over five thousand ICFs from ClinicalTrials.gov in the USA to assess their literacy levels.

We analyzed 5,239 US-based ICFs from ClinicalTrials.gov using readability metrics such as the Flesch Reading Ease, Flesch-Kincaid Grade Level, Gunning Fog Index, and the percentage of difficult words. We examined trends in readability levels across studies initiated from 2005 to 2024.

Most ICFs exceeded the recommended 8th-grade reading level, with an average Flesch-Kincaid Grade Level of 10.99. While 91% of the ICFs were written above the 8th-grade level, there was an observable improvement in readability, with fewer studies exceeding a 10th-grade reading level in recent years.

The study reveals a discrepancy between the recommended readability levels and actual ICFs, highlighting a need for simplification. Despite a trend toward improvement in more recent years, ongoing efforts are necessary to ensure ICFs are comprehensible to participants of varied educational backgrounds, reinforcing the ethical integrity of the consent process.

To assist policy-makers in improving access to eye care in under-served areas by analysing the relationship between motivational factors affecting the uptake of task-shifting in eye care and the recruitment and retention of optometrists in remote and rural areas.

The World Health Organization recommends two key strategies in tackling preventable blindness in under-served areas: improving human resources for health and task-shifting. The relationship between task-shifting and recruitment and retention of eye care workers in under-served areas is unknown. Ghana and Scotland are two countries from different levels of economic development that have notably expanded the roles of optometrists and struggle with rural recruitment and retention.

Motivation was explored through semi-structured interviews with 19 optometrists in Ghana and Scotland with experience in remote and rural practice. Framework analysis was used to analyse interviews, explore the relationship between task-shifting and recruitment and retention and create recommendations for policy.

The main motivational considerations included altruism, quality of life, learning and career opportunities, fulfilling potential, remuneration, stress of decision-making and collaboration. Motivational and demotivational factors for task-shifting and recruitment/retention shared many similar aspects.

Recruitment and retention in remote and rural areas require staff be incentivised to take up those positions, motivated to remain and given the adequate resources for personal and professional fulfilment. Task-shifting also requires incentivisation, motivation to continue and the resources to be productive. Many motivational factors influencing recruitment/retention and task-shifting are similar suggesting these two strategies can be compatible and complementary in improving access to eye care, although some factors are culture and context specific. Understanding optometrists’ motivation can help policy-makers improve rural recruitment and retention and plan services.

Participant recruitment and retention (R&R) are well-documented challenges in longitudinal studies, especially those involving populations historically underrepresented in research and vulnerable groups (e.g., pregnant people or young children and their families), as is the focus of the HEALthy Brain and Child Development (HBCD) birth cohort study. Subpar access to transportation, overnight lodging, childcare, or meals can compromise R&R; yet, guidance on how to overcome these “logistical barriers” is sparse. This study’s goal was to learn about the HBCD sites’ plans and develop best practice recommendations for the HBCD consortium for addressing these logistical barriers.

The HBCD’s workgroups developed a survey asking the HBCD sites about their plans for supporting research-related transportation, lodging, childcare, and meals, and about the presence of institutional policies to guide their approach. Descriptive statistics described the quantitative survey data. Qualitative survey responses were brief, not warranting formal qualitative analysis; their content was summarized.

Twenty-eight respondents, representing unique recruitment locations across the U.S., completed the survey. The results indicated substantial heterogeneity across the respondents in their approach toward supporting research-related transportation, lodging, childcare, and meals. Three respondents were aware of institutional policies guiding research-related transportation (10.7%) or childcare (10.7%).

This study highlighted heterogeneity in approaches and scarcity of institutional policies regarding research-related transportation, lodging, childcare, and meals, underscoring the need for guidance in this area to ensure equitable support of participant R&R across different settings and populations, so that participants are representative of the larger community, and increase research result validity and generalizability.

SPARK launched in 2016 to build a US cohort of autistic individuals and their family members. Enrollment includes online consent to share data and optional consent to provide saliva for genomic analysis. SPARK’s recruitment strategies include social media and support of a nation-wide network of clinical sites. This study evaluates SPARK’s recruitment strategies to enroll a core study population.

Individuals who joined between January 31, 2018, and May 29, 2019 were included in the analysis. Data include sociodemographic characteristics, clinical site referral, the website URL used to join, how the participant heard about SPARK, enrollment completion (online registration, study consents, and returning saliva sample), and completion of the baseline questionnaire. Logistic regressions were performed to evaluate the odds of core participant status (completing enrollment and baseline questionnaire) by recruitment strategy.

In total, 31,715 individuals joined during the study period, including 40% through a clinical site. Overall, 88% completed online registration, 46% returned saliva, and 38% were core participants. Those referred by a clinical site were almost twice as likely to be core participants. Those who directly visited the SPARK website or performed a Google search were more likely to be core participants than those who joined through social media.

Being a core participant may be associated with the “personal” connection and support provided by a clinical site and/or site staff, as well as greater motivation to seek research opportunities. Findings from this study underscore the value of adopting a multimodal recruitment approach that combines social media and a physical presence.

Obtaining complete and accurate information in recruitment registries is essential for matching potential participants to research studies for which they qualify. Since electronic health record (EHR) systems are required to make patient data available to external systems, an interface between EHRs and recruitment registries may improve accuracy and completeness of volunteers’ profiles. We tested this hypothesis on ResearchMatch (RM), a disease- and institution-neutral recruitment registry with 1357 studies across 255 institutions.

We developed an interface where volunteers signing up for RM can authorize transfer of demographic data, medical conditions, and medications from the EHR into a registration form. We obtained feedback from a panel of community members to determine acceptability of the planned integration. We then developed the EHR interface and performed an evaluation study of 100 patients to determine whether RM profiles generated with EHR-assisted adjudication included more conditions and medications than those without the EHR connection.

Community member feedback revealed that members of the public were willing to authenticate into the EHR from RM with proper messaging about choice and privacy. The evaluation study showed that out of 100 participants, 75 included more conditions and 69 included more medications in RM profiles completed with the EHR connection than those without. Participants also completed the EHR-connected profiles in 16 fewer seconds than non-EHR-connected profiles.

The EHR to RM integration could lead to more complete profiles, less participant burden, and better study matches for many of the over 148,000 volunteers who participate in ResearchMatch.