A new study provides the first systematic analysis of equality, diversity and inclusion (EDI) strategies across all NIHR Biomedical Research Centres (BRCs) and NIHR Clinical Research Facilities (CRFs)...

We are pleased to showcase a new resource that we have co-developed with members of the Rabta Group at the Bilal Jamia Masjid Mosque to support conversations about ageing research with under-represent...

Women’s health research is already underrepresented, and breastfeeding women face further exclusions. Read more here.

Background: Emerging digital health research poses roadblocks to the inclusion of historically marginalized populations in research. Exclusion of underresourced communities in digital health research is a result of multiple factors (eg, limited technology access, decreased digital literacy, language barriers, and historical mistrust of research and research institutions). Alternative methods of access and engagement may aid in achieving long-term sustainability of diversified participation in digital health research, ensuring that developed technologies and research outcomes are effective and equitable. Objective: This study aims to (1) characterize socioeconomic and demographic differences in individuals who enrolled and engaged with different remote, digital, and traditional recruitment methods in a digital health pregnancy study and (2) determine whether social media outreach is an efficient way of recruiting and retaining specific underrepresented populations (URPs) in digital health research. Methods: The Better Understanding the Metamorphosis of Pregnancy (BUMP) study was used as a case example. This is a prospective, observational, cohort study using digital health technology to increase understanding of pregnancy among 524 women, aged 18-40 years, in the United States. The study used different recruitment strategies: patient portal for genetic testing results, paid/unpaid social media ads, and a community health organization providing care to pregnant women (Moses/Weitzman Health System). Results: Social media as a recruitment tool to engage URPs in a digital health study was overall effective, with a 23.6% (140/594) enrollment rate of those completing study interest forms across 25 weeks. Community-based partnerships were less successful, however, resulting in 53.3% (57/107) engagement with recruitment material and only 8.8% (5/57) ultimately enrolling in the study. Paid social media ads provided access to and enrollment of a diverse potential participant pool of race- or ethnicity-based URPs in comparison to other digital recruitment channels. Of those that engaged with study materials, paid recruitment had the highest percentage of non-White (non-Hispanic) respondents (85/321, 26.5%), in comparison to unpaid ads (Facebook and Reddit; 37/167, 22.2%). Of the enrolled participants, paid ads also had the highest percentage of non-White (non-Hispanic) participants (14/70, 20%), compared to unpaid ads (8/52, 15.4%) and genetic testing service subscribers (72/384, 18.8%). Recruitment completed via paid ads (Instagram) had the highest study retention rate (52/70, 74.3%) across outreach methods, whereas recruitment via community-based partnerships had the lowest (2/5, 40%). Retention of non-White (non-Hispanic) participants was low across recruitment methods: paid (8/52, 15.4%), unpaid (3/35, 14.3%), and genetic testing service subscribers (50/281, 17.8%). Conclusions: Social media recruitment (paid/unpaid) provides access to URPs and facilitates sustained retention similar to other methods, but with varying strengths and weaknesses. URPs showed lower retention rates than their White counterparts across outreach methods. Community-based recruitment showed lower engagement, enrollment, and retention. These findings highlight social media’s potential for URP engagement and enrollment, illuminate potential roadblocks of traditional methods, and underscore the need for tailored research to improve URP enrollment and retention.

We caught up with Shoba Dawson to get some practical insight into embedding inclusivity in research...