Dataset Information

Transformative Use of an Improved All-Payer Hospital Discharge Data Infrastructure for Community-Based Participatory Research: A Sustainability Pathway.

ABSTRACT:

Objective

To describe the use of a clinically enhanced maternal and child health (MCH) database to strengthen community-engaged research activities, and to support the sustainability of data infrastructure initiatives.

Data sources/study setting

Population-based, longitudinal database covering over 2.3 million mother-infant dyads during a 12-year period (1998-2009) in Florida.

Setting

A community-based participatory research (CBPR) project in a socioeconomically disadvantaged community in central Tampa, Florida.

Study design

Case study of the use of an enhanced state database for supporting CBPR activities.

Principal findings

A federal data infrastructure award resulted in the creation of an MCH database in which over 92 percent of all birth certificate records for infants born between 1998 and 2009 were linked to maternal and infant hospital encounter-level data. The population-based, longitudinal database was used to supplement data collected from focus groups and community surveys with epidemiological and health care cost data on important MCH disparity issues in the target community. Data were used to facilitate a community-driven, decision-making process in which the most important priorities for intervention were identified.

Conclusions

Integrating statewide all-payer, hospital-based databases into CBPR can empower underserved communities with a reliable source of health data, and it can promote the sustainability of newly developed data systems.

SUBMITTER: Salemi JL

PROVIDER: S-EPMC4545334 | biostudies-literature | 2015 Aug

REPOSITORIES: biostudies-literature

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Publications

Transformative Use of an Improved All-Payer Hospital Discharge Data Infrastructure for Community-Based Participatory Research: A Sustainability Pathway.

Salemi Jason L JL Salinas-Miranda Abraham A AA Wilson Roneé E RE Salihu Hamisu M HM

Health services research 20150416

<h4>Objective</h4>To describe the use of a clinically enhanced maternal and child health (MCH) database to strengthen community-engaged research activities, and to support the sustainability of data infrastructure initiatives.<h4>Data sources/study setting</h4>Population-based, longitudinal database covering over 2.3 million mother-infant dyads during a 12-year period (1998-2009) in Florida.<h4>Setting</h4>A community-based participatory research (CBPR) project in a socioeconomically disadvantag ...[more]

PMID: 25879276

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Project description:ContextThe Affordable Care Act resulted in unprecedented reductions in the uninsured population through subsidized private insurance and an expansion of Medicaid. Early estimates from the beginning of 2014 showed that the Medicaid expansion decreased uninsured discharges and increased Medicaid discharges with no change in total discharges.ObjectiveTo provide new estimates of the effect of the ACA on discharges for specific conditions.Design, setting, and participantsWe compared outcomes between states that did and did not expand Medicaid using state-level all-capture discharge data from 2009-2014 for 42 states from the Healthcare Costs and Utilization Project's FastStats database; for a subset of states we used data through 2015. We stratified the analysis by baseline uninsured rates and used difference-in-differences and synthetic control methods to select comparison states with similar baseline characteristics that did not expand Medicaid.Main outcomeOur main outcomes were total and condition-specific hospital discharges per 1,000 population and the share of total discharges by payer. Conditions reported separately in FastStats included maternal, surgical, mental health, injury, and diabetes.ResultsThe share of uninsured discharges fell in Medicaid expansion states with below (-4.39 percentage points (p.p.), -6.04 --2.73) or above (-7.66 p.p., -9.07 --6.24) median baseline uninsured rates. The share of Medicaid discharges increased in both small (6.42 p.p. 4.22-6.62) and large (10.5 p.p., 8.48-12.5) expansion states. Total and most condition-specific discharges per 1,000 residents did not change in Medicaid expansion states with high or low baseline uninsured rates relative to non-expansion states (0.418, p = 0.225), with one exception: diabetes. Discharges for that condition per 1,000 fell in states with high baseline uninsured rates relative to non-expansion states (-0.038 95% p = 0.027).ConclusionsEarly changes in payer mix identified in the first two quarters of 2014 continued through the Medicaid expansion's first year and are distributed across all condition types studied. We found no change in total discharges between Medicaid expansion and non-expansion states, however residents of states that should have been most affected by the Medicaid expansion were less likely to be hospitalized for diabetes.

Project description:National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of "knowledge production" is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more suitable for CBPR, and we propose alternative questions and procedures that may be utilized when assessing the ethical appropriateness of CBPR.

Dataset Information

Transformative Use of an Improved All-Payer Hospital Discharge Data Infrastructure for Community-Based Participatory Research: A Sustainability Pathway.

Objective

Data sources/study setting

Setting

Study design

Principal findings

Conclusions

Publications

Transformative Use of an Improved All-Payer Hospital Discharge Data Infrastructure for Community-Based Participatory Research: A Sustainability Pathway.

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