Persistent challenges in engaging diverse groups of patients in patient-centered outcomes research (PCOR) have hampered efforts to develop effective patient-centered diagnostic and treatment options. For low SES communities participating in PCOR may pose special concerns. Given that many residents of these communities are at increased risk for (potential patients) or diagnosed with (patients) acute or chronic medical conditions, developing innovative methodologies for increasing scientific understanding, and opening a dialogue between patients, researchers, and community stakeholders around PCOR is critical to advancing the science. In general, patient understanding and capacity to make informed decisions regarding the ethical, social and legal implications of research participation is limited. Legacies of past abuses have left many weary of traditional academic research. PCOR represents a paradigm shift, but is not familiar to most people in low SES communities and thus not trusted. Low SES communities are generally resistant, almost impervious to the introduction of new information from outside their group because the ties among community members are strong – the result of close and stable interactions over time. In order to advance PCOR we need to build sustainable mechanisms for establishing weak ties within these communities; “local bridges” that create “ties between two persons that are the shortest (and often the only plausible) route by which information might travel from those connected to one to those connected to the other.” The Academic Community Collaborative to Engage Stakeholders, ACCESS, online platform will create a virtual bridge for engaging diverse, hard-to reach, socioeconomically disadvantaged, under-represented communities and their residents in PCOR and serve as a nexus for the PCOR stakeholder community—patients, caregivers, local, state and federal advocacy organizations, researchers, healthcare providers, payers, industry and policymakers to gather, share-information, co-learn in real-time, form collaborative partnerships and build trust.
Activities Convene a diverse group of 29 community stakeholders including community leaders and patient-partners from five socioeconomically disadvantaged enclaves where African-American, African, Asian, Hispanic and Native Americans reside to collaboratively develop a patient-centered integrated digital ecosystem.
Outcomes:A large-scale, integrated fully customized, ADA compliant online community engagement platform linked to a PCOR content engine containing: Customized views/filters for user groups; Interactive online patient self-assessments and resources; Audio transcription and multi-lingual translation functions; Customized mobile functions, including system notifications via text messages. A searchable Library of in-language and culturally appropriate educational materials and tools including online workshops; online evaluation metrics to track user behaviors.
Patient and Stakeholder Engagement Plan:We will bring together 20 African-American, Hispanic, Latino, Asian-American, and Native American patient partners and 9 community stakeholders and leaders from five local medically underserved communities in Brooklyn, the South Bronx, the Lower East Side, Chinatown and Mahwah New Jersey. Community Partners:Families United for Racial and Economic Equality; Youth Ministries for Peace and Justice; Good Old Lower East Side; Chinese Progressive Association; Ramapough Lunaape Nation Turtle Clan.