Skip to main content

Currently Skimming:

4 Access and Equity
Pages 37-50

The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.


From page 37...
... • A key to success in engaging with underrepresented popula tions in clinical trials is to have a strong ethos for community engagement, acknowledge histories of discrimination and mar ginalization, and have transparent discussions about power and responsibilities. Building a network of partnerships with com munity trust brokers can help facilitate engagement with the community.
From page 38...
... of the Institute for eHealth Equity, described an approach to conducting meaningful outreach and engagement for underserved communities, and Sherine El-Toukhy, the Earl Stadtman Investigator at the National Institute on Minority Health and Health Disparities, offered lessons learned from behavioral interventions on equitable participation of minorities in research. An open discussion, moderated by Kathy Hudson, executive ­ director of the People-Centered Research Foundation, and Rebecca Pentz, professor of hematology and medical oncology in research ethics at the Emory University School of Medicine, followed the four presentations.
From page 39...
... To address this unmet need, the research and technology sectors could work together to equip participants with technologies that will better enable them to connect with research studies. RECRUITMENT FOR CLINICAL TRIALS Sally Okun, Vice President of Policy and Ethics, PatientsLikeMe Sally Okun, using ALS as a use-case, focused her presentation on how unique trial designs, such as virtual trials and patient-initiated trials, can not only create new insights, but also increase participation rates of those who are typically excluded from clinical trials.
From page 40...
... Identifying Off-Label Treatments for Possible Clinical Trials PatientsLikeMe is also a member of ALSUntangled, a consortium of patients, clinicians, and researchers that seeks to understand the efficacy of alternative and off-label treatments to which people living with ALS turn. ALSUntangled engages in patient-driven inquiry by basing research initiation decisions on patient input regarding which alternative treatments to test further.
From page 41...
... The Institute for eHealth Equity was formed to address the concern that the adoption of technology in health care might exacerbate health disparities given that developers rarely seek input from underserved populations. For example, Buchanan remarked how academic medical centers in the Cleveland area often receive grants from developers to study African American infant mortality rates, but none have invited community organizations or members to offer input when grants are being written.
From page 42...
... According to Buchanan, the program had a 100 percent retention rate, indicating the success of a public health campaign that leverages faithand community-based organizations as an entry point. An Online Portal for Community Engagement and Collaboration in Clinical Trials The Institute for eHealth Equity has recently developed a platform called Our Healthy Community6 in collaboration with faith- and communitybased organizations, including the African Methodist Episcopal Church.7 Our Healthy Community enables underserved faith- and community-based ­ organizations to coordinate community health improvement campaigns sponsored by health care payers, providers, and government and academic stakeholders.
From page 43...
... 8  SMART on FHIR "is a set of open specifications to integrate apps with electronic health records, portals, health information exchanges, and other health information technology systems" (SMART, 2017)
From page 44...
... A key to the successful introduction of digital tools in health care is to have a mechanism to hear what the community wants rather than designing them in a vacuum, said Buchanan. This will require a strong ethos for community engagement, including the acknowledgment of histories of discrimination, transparent discussions about power and responsibilities, documentation of community strengths, collection of local knowledge to understand a community's culture intimately, and building capacity within the community to identify opportunities for co-learning and sustainable, equitable partnerships.
From page 45...
... LESSONS LEARNED FROM BEHAVIORAL INTERVENTIONS Sherine El-Toukhy, Earl Stadtman Investigator, National Institute on Minority Health and Health Disparities Sherine El-Toukhy highlighted lessons she has learned from research on the participation of underserved populations in digital behavioral interventions. She suggested that while health information technology may reduce health inequities, it can unintentionally exacerbate existing disparities or create new ones.
From page 46...
... For example, a National Cancer Institute text messaging program, SmokeFreeMOM, can increase smoking cessation rates among pregnant women who want to quit smoking (Kamke et al., In Review)
From page 47...
... For example, in the text messaging-based smoking cessation intervention mentioned earlier, dropout rates were highest during the first week of the intervention, with continued dropouts over time. To improve engagement, it is important to involve the end users in the creation and design process and to prioritize the needs and wants of marginalized populations, said El-Toukhy.
From page 48...
... Cynthia Geoghegan from the Clinical Trials Transformation Initiative (CTTI) noted that a survey CTTI conducted on 400 potential research participants revealed that 98 percent of respondents wanted their data retuned in real time.
From page 49...
... According to Buchanan, Our Healthy Community is able to share aggregated data from its campaigns with community organizations for their own uses. Buchanan noted that a long-term goal of Our Healthy Community includes analyzing trends and capturing data on social determinants of health and integrating this information with EHRs.


This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More information on Chapter Skim is available.