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Accelerating the Use of Findings from Patient-Centered Outcomes Research in Clinical Practice to Improve Health and Health Care Proceedings of a Workshop Series (2022) / Chapter Skim
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8 Workshop 2, Session 2: Opportunities for AHRQ, ASPE, PCORI Collaborations to Improve Sustainability of Their Efforts
Pages 59-70

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From page 59...
... (Phillips) MAINTAINING PARTNERSHIPS FOR SUSTAINABLE DATA COLLECTION Abby Collier, director of the National Center for Fatality Review and Prevention, explained that her organization, a program of the Michigan Public Health Institute, supports all aspects of child fatality review, as well as of fetal 59
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From page 60...
... States have varying resources for collecting and entering data and their child death review committees have varying access to records. Collier explained that currently 47 states use the center for child death reviews, and 18 of those use it for child death reviews and fetal and infant mortality reviews.
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From page 61...
... at the University of Minnesota, began her presentation by explaining that from a state-level health policy perspective, the promotion of health equity requires a different approach than traditional clinical effectiveness research. This is because states have different objectives, different research questions, and different data resources.
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From page 62...
... SHADAC is working with state Medicaid data analysts on a project investigating how best to encourage Medicaid beneficiaries to share what are currently optional data on race, ethnicity, sexual orientation, gender identity, and disability status. They hope to translate those findings into best practices and policy change.
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From page 63...
... Blewett noted that it would be beneficial for AHRQ to support research on the role of community context, poverty, structural racism, and the social determinants of health in health outcomes. She noted there is also limited understanding of the complex network of safety-net providers that are often unrepresented in clinical trials or comparative effectiveness research.
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From page 64...
... Phillips contended that applying decision support tools developed using hospital data to decision-making in primary care could harm people.
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From page 65...
... The final collaboration Phillips addressed would update, reconfigure, and revive clinical data infrastructure. In 2018, the National Ambulatory Medical Care Survey (NAMCS)
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From page 66...
... Phillips suggested that AHRQ, ASPE, and PCORI consider how they could collaborate to support efforts to improve NAMCS and supplement it with registry data, claims data, and EHR data to create a more valuable data set that is more representative of the care provided in the primary care setting. Phillips acknowledged Puckrein's comments about data infrastructure and creating a data lake and noted that there has been a significant loss of community health indicators as a result of the end of four federal health data systems in 2016.
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From page 67...
... She noted that good relationships make it possible for her organization to work with its partners to address conflicting or missing data; while legislation around information sharing exists, it cannot force agencies to provide quality data. Phillips said that when he served on the National Committee on Vital and Health Statistics, there were discussions about what is needed improve the quality of data submitted to these data sets.
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From page 68...
... He noted that patients with long COVID present to primary care with a variety of symptoms that clinicians must differentiate from symptoms of heart or lung disease. The data captured during that process in primary care could be used in AI/ML to develop clinical decision support tools informed by more longitudinal data.
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From page 69...
... Phillips suggested that this could be an opportunity for AHRQ to support research to identify the data infrastructure needed to disseminate this type of program widely. Blewett agreed with this idea and said it could help address health equity in AHRQ's priority populations.
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From page 70...
... Hughes noted that the discussion raised the importance of recruiting and developing an equity-minded research workforce. Speakers suggested research funders should consider requiring equity impact measurement in comparative effectiveness research.
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Key Terms

  • child death
  • data infrastructure
  • decision support
  • death review
  • ethnicity data

  • health equity
  • z codes
  • health information
  • care setting
  • support tools

  • clinical decision
  • review teams
  • fatality review
  • health data
  • care data

  • medicaid data
  • using data
  • claims data
  • care workforce
  • state medicaid

  • effectiveness research
  • death reviews
  • neighborhood stress
  • information exchanges
  • priority populations

  • stress score
  • barriers related
  • state data
  • administrative data
  • quality data


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