Background: The COVID-19 pandemic revealed major gaps in public health agencies' (PHAs') data and reporting infrastructure, which limited the ability of public health officials to conduct disease surveillance, particularly among racial or ethnic minorities disproportionally affected by the pandemic. Leveraging existing health information exchange organizations (HIOs) is one possible mechanism to close these technical gaps, as HIOs facilitate health information sharing across organizational boundaries.
Objective: The aim of the study is to survey all HIOs that are currently operational in the United States to assess HIO connectivity with PHAs and HIOs' capabilities to support public health data exchange.
Methods: Drawing on multiple sources, we identified all potential local, regional, and state HIOs that were operational in the United States as of March 1, 2022. We defined operational as HIOs that facilitated exchange between at least 2 independent entities. We fielded a survey among our census list of 135 HIOs in January-July 2023. The survey confirmed HIO status as well as captured organizational demographics and current and potential support for PHAs. We report descriptive statistics on HIO demographics and connectivity with PHAs. We also include results on services and data available to support PHAs, funding sources to support public health reporting, and barriers to public health reporting. Of the 135 potential HIOs that received the survey, 90 met our definition of an HIO, and 77 completed the survey, yielding an 86% response rate.
Results: We found that 66 (86%) of HIOs in 45 states were electronically connected to at least 1 PHA, yielding 187 HIO-PHA connections across all HIOs. Among HIOs connected to PHAs, the most common type of public health reporting supported by HIOs was immunization registry (n=39, 64%), electronic laboratory result (n=37, 63%), and syndromic surveillance (n=34, 61%). In total, 58% (n=38) of HIOs connected to PHAs provided data to address COVID-19 information gaps, and an additional 30% (n=20) could do so. The most common types of data provided to PHAs were hospitalization information (n=54, 93%), other demographic data (n=53, 91%), health information (eg, chronic health conditions; n=51, 88%), and hospital laboratory results (n=51, 88%). A total of 64% (n=42) of HIOs provided at least 1 type of data analytic service to PHAs to support COVID-19 pandemic response efforts. Top HIO reported barriers to support PHA activities included limited PHA funding (n=21, 32%) and PHAs' competing priorities (n=15, 23%).
Conclusions: Our results show that many HIOs are already connected to PHAs and that they are assuming an emerging role to facilitate public health reporting. HIOs are well-positioned to provide value-added support for public health data exchange and address PHAs' information gaps, as ongoing federal efforts to modernize public health data infrastructure and interoperability continue.
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http://dx.doi.org/10.2196/64969 | DOI Listing |
Alzheimers Dement
December 2024
University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA.
Background: Pharmacoepidemiologic studies assessing drug effectiveness for Alzheimer's disease and related dementias (ADRD) are increasingly popular given the critical need for effective therapies for ADRD. To meet the urgent need for robust dementia ascertainment from real-world data, we aimed to develop a novel algorithm for identifying incident and prevalent dementia in claims.
Method: We developed algorithm candidates by different timing/frequency of dementia diagnosis/treatment to identify dementia from inpatient/outpatient/prescription claims for 6,515 and 3,997 participants from Visits 5 (2011-2013; mean age 75.
Background: Availability of amyloid modifying therapies will dramatically increase the need for disclosure of Alzheimer's disease (AD) related genetic and/or biomarker test results. The 21st Century Cares Act requires the immediate return of most medical test results, including AD biomarkers. A shortage of genetic counselors and dementia specialists already exists, thus driving the need for scalable methods to responsibly communicate test results.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Sanders-Brown Center on Aging, University of Kentucky, Lexington, KY, USA.
Background: Some types of cancer have been associated with reduced risk of clinical dementia diagnosis. Whether cancer history may be associated with neuropathological features of neurodegeneration or cerebrovascular disease is not well understood. We investigated the relation between cancer diagnosis and brain pathology in a sample of community-based research volunteers enrolled in an Alzheimer's Disease Research Center (ADRC) cohort.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, Netherlands.
Background: The first disease-modifying treatments (DMTs) for Alzheimer's disease (AD) have been approved in the USA, marking profound changes in AD-diagnosis and treatment. This will bring new challenges in terms of clinician-patient communication. We aimed to collect the perspectives of memory clinic professionals regarding the most important topics to address and what (tools) would support professionals and their patients and care partners to engage in a meaningful conversation on whether (or not) to initiate treatment.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
The George Institute for Global Health, University of New South Wales, Imperial College London, Sydney, NSW, Australia.
Background: Recent growth in the functionality and use of technology has prompted an increased interest in the potential for remote or decentralised clinical trials in dementia. There are many potential benefits associated with decentralised medication trials, but the field is currently lacking specific recommendations for their delivery in the dementia field.
Method: A modified Delphi method engaged a panel with substantial expertise in dementia trial design and delivery and backgrounds that included neurology, psychiatry, pharmacology and psychology, to develop recommendations for the conduct of decentralised medication trials in dementia prevention.
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