In 2005, local leaders in New York City developed the Washington Heights/Inwood Network for Asthma Program to address the burden of asthma in their community. Bilingual community health workers based in community organizations and the local hospital provided culturally appropriate education and support to families who needed help managing asthma. Families participating in the yearlong care coordination program received comprehensive asthma education, home environmental assessments, trigger reduction strategies, and clinical and social referrals. Since 2006, 472 families have enrolled in the yearlong program. After 12 months, hospitalizations and emergency department visits decreased by more than 50%, and caregiver confidence in controlling the child's asthma increased to nearly 100%. Key to the program's success was the commitment and involvement of community partners from program inception to date.
Understanding key health concepts is crucial to participation in Precision Medicine initiatives. In order to assess methods to develop and disseminate a curriculum to educate community members in Northern Manhattan about Precision Medicine, clients from a local community-based organization were interviewed during 2014–2015. Health literacy, acculturation, use of Internet, email, and text messaging, and health information sources were assessed. Associations between age and outcomes were evaluated; multivariable analysis used to examine the relationship between participant characteristics and sources of health information. Of 497 interviewed, 29.4% had inadequate health literacy and 53.6% had access to the Internet, 43.9% to email, and 45.3% to text messaging. Having adequate health literacy was associated with seeking information from a healthcare professional (OR 2.59, 95% CI 1.54–4.35) and from the Internet (OR 3.15, 95% CI 1.97–5.04); having ≤ grade school education (OR 2.61, 95% CI 1.32–5.17) also preferred information from their provider; persons >45 years (OR 0.29, 95% CI 0.18–0.47) were less likely to use the Internet for health information and preferred printed media (OR 1.64, 95% CI 1.07–2.50). Overall, electronic communication channel use was low and varied significantly by age with those ≤45 years more likely to utilize electronic channels. Preferred sources of health information also varied by age as well as by health literacy and educational level. This study demonstrates that to effectively communicate key Precision Medicine concepts, curriculum development for Latino community members of Northern Manhattan will require attention to health literacy, language preference and acculturation and incorporate more traditional communication channels for older community members.
Focusing screening and treatment to those most likely to benefit is the promise of precision medicine but inequitable distribution of precision medicine innovations may exacerbate health disparities. We investigated whether complex genomic concepts can be successfully communicated to diverse populations. Incorporating principles of Community‐based Participatory Research, we created a precision medicine curriculum tailored to the needs of our predominantly Hispanic community. We administered the curriculum over 26 months, assessed pre‐ and post‐test comprehension of 8 genetics‐related terms, and compared comprehension differences based on demography and health literacy. In total, 438 individuals completed pre‐/post‐test assessments. At pre‐test, 45.6% scored ≥75% across eight major constructs; 66.7% at post‐test. Comprehension increased for 7/8 terms with greatest pre/post‐test increases for ‘mutation’ (55% to 78%) and ‘sporadic’ (34% to 59%). Mean pre‐test comprehension scores (≥75%) were lower for Spanish versus. English speakers; mean post‐test scores were equivalent. No heterogeneity by demographics or health literacy was observed. We demonstrate that a brief community educational program can improve knowledge of complex genomic concepts. Interventions to increase understanding of genomic concepts underlying precision medicine are key to patients making informed treatment and prevention decisions and may lead to more equitable uptake of precision medicine initiatives.
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