Co-establishing an infrastructure for routine data collection to address disparities in infant mortality: planning and implementation

Background Efforts to address infant mortality disparities in Ohio have historically been adversely affected by the lack of consistent data collection and infrastructure across the community-based organizations performing front-line work with expectant mothers, and there is no established template for implementing such systems in the context of diverse technological capacities and varying data collection magnitude among participating organizations. Methods Taking into account both the needs and limitations of participating community-based organizations, we created a data collection infrastructure that was refined by feedback from sponsors and the organizations to serve as both a solution to their existing needs and a template for future efforts in other settings. Results By standardizing the collected data elements across participating organizations, integration on a scale large enough to detect changes in a rare outcome such as infant mortality was made possible. Datasets generated through the use of the established infrastructure were robust enough to be matched with other records, such as Medicaid and birth records, to allow more extensive analysis. Conclusion While a consistent data collection infrastructure across multiple organizations does require buy-in at the organizational level, especially among participants with little to no existing data collection experience, an approach that relies on an understanding of existing barriers, iterative development, and feedback from sponsors and participants can lead to better coordination and sharing of information when addressing health concerns that individual organizations may struggle to quantify alone.

HIV/AIDS community information outreach program (ACIOP): A landmark NIH conference and an enduring NLM role in meeting the affected community’s need for information access

In June 1993, the National Library of Medicine (NLM) joined with the National Institutes of Health’s (NIH) Office of AIDS Research (OAR), and the National Institute of Allergy and Infectious Diseases (NIAID) to host a conference at a pivotal time in the HIV/AIDS epidemic to understand better the information needs of five major constituency groups: clinical researchers; clinical providers; news media and the public; patients; and the affected community. NLM’s director, Donald A.B. Lindberg M.D., and staff sought to identify new program possibilities benefitting from the input of current and potential users of the Library’s information services. Conference recommendations led to a key NLM policy change providing cost-free access to all AIDS data, and the establishment of the HIV/AIDS community information outreach program (ACIOP), which enabled new partnerships with local community-based organizations serving the affected community. Uniquely funded and long running, more than 300 ACIOP projects have been supported to-date. These projects have improved awareness and use of national HIV/AIDS information resources; enhanced information seeking skills; developed locally generated information resources; and enhanced the capacity of community-based organizations to use new information and computer technologies providing access to essential information resources and services.

The Scope and Content of the Sri Lankan Constitution: Perspectives of Opinion Leaders

The Scope and Content of the Sri Lankan Constitution: Perspectives of Opinion Leaders comprises a summary of findings that assesses the knowledge, attitudes and perceptions of leaders from the four main ethnic communities (Sinhala, Tamil, Up Country Tamil and Muslim) across the island. These leaders included religious leaders, government officials, office holders of community-based organizations, teachers and school principals. The assessment adapted and applied International IDEA’s constitutional performance assessment methodology to collect these leaders’ perceptions on the constitutional text and realities on current constitution, the Presidency, human rights and the nature of political and economic order.

CATCH-ON Educational Interventions for Providers, Older Adults, and Caregivers

CATCH-ON, the collaborative GWEP led by Rush University Medical Center, is working to create Age-Friendly Communities by assuring that health systems, community-based organizations, and older adults and families are educated about the 4Ms. For providers, CATCH-ON offers a monthly Learning Community that focuses on one of the 4Ms each quarter. Each session provides practical recommendations for 4Ms implementation and opportunities to share experiences in small groups. CATCH-ON also partnered with Community Catalyst, older adults, and caregivers to develop a 4Ms educational brochure. The brochure is available electronically and by paper to educate older adults and caregivers about the 4Ms and discussing them with their healthcare team. Additionally, CATCH-ON created 4M online modules for older adults and families. This session will explore the success and lessons learned in developing educational interventions for diverse audiences and how this approach strengthens Age-Friendly Communities.

Adapting to Create Innovative Virtual Falls Prevention Programs for at Risk Older Adults During a Global Pandemic

Baystate Health’s Geriatrics Workforce Enhancement Program (GWEP) postponed implementation of Group Medical Visits focused on falls reduction for older adults in Springfield, Massachusetts due to COVID-19 and quickly shifted efforts to participate in Dartmouth’s Falls Prevention Training Program. Long standing GWEP Community Based Organizations (CBOs) were consulted, and all believed that the virtual Tai Ji Quan Moving for Better Balance® (TJQMBB) program would combat social isolation and improve older adults’ comfort with technology in addition to reducing falls during the COVID-19 pandemic. Baystate’s GWEP was able to reallocate grant dollars to support the purchase of equipment for CBOs to deliver TJQMBB virtually. While many challenges continue to arise, the innovative and collaborative approach between the two GWEPs and Baystate’s CBOs leveraging Administration for Community Living falls prevention funding has led to high level engagement and rapid implementation. Dartmouth’s model capitalizes on and strengthens existing GWEP partnerships with its CBOs.

Video Chat Technology to Support Home and Community-Based Organizations

Concerns about loneliness and social isolation for older adults were already evident but have been exacerbated during the pandemic. Home and Community Based Organizations (HCBOs) provide support for their older clients in the community and need to support their staff, who may be working remotely. We are exploring the potential of video chat technology to connect older adults with their friends, families, and other support. We review the technologies available to older adults in the community and staff working with older adults to promote social engagement. We are collaborating with OneClick.chat to identify the needs of the HCBOs through a literature review and qualitative interviews of staff members from different senior living environments. Their challenges and successes of engaging older adults through video chat technologies will provide guidance for design of an HCBO dashboard for OneClick.chat that will support diverse needs.

CAPABLE Program Improves Disability in Research and Implementation Settings

Interventions to reduce disability are crucial for older adults with disabilities to avert unnecessary hospitalizations or nursing home placements and improve daily life. Developed and tested at one research site, multiple health systems and community based organizations have since implemented CAPABLE. All published or peer reviewed tests of CAPABLE were reviewed (six studies, 11 sites) with a total of 1087 low-income community-dwelling older adults with disabilities. Participants were an average age of 74-79, cognitively intact, and self-reported difficulty with one or more activities of daily living (ADL). These trials were reviewed by extracting the participants’ scores on main outcomes, ADLs and IADLs, and when available, fall efficacy, depression, pain and cost savings. All studies yielded improvements in ADL and IADL limitations, with small to strong effect sizes. Studies with the complete dose of CAPABLE showed more improvement in ADLs and cost savings than the studies that implemented a decreased dose.