Building data capacity for patient-centered outcome research, 2017 report issued

An annual report providing project descriptions for each of the HHS Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) portfolio’s 21 projects that were active in calendar year 2017 has been issued by its administering entity, the Office of the Assistant Secretary for Planning and Evaluation (ASPE). Each project description in the report provides an overview of the project goals and objectives, highlights major project accomplishments, describes dissemination activities intended to raise awareness of the project’s work to the larger PCOR community, summarizes the core research functionalities the project addresses, identified potential applications of the project products, and illustrates interagency collaborations that seek to leverage project products and lessons learned.

Portfolio topics. The 21 projects that make up the OS-PCORTF portfolio, many of which are cross-agency project collaborations, represent 34 individual project awards. The projects in the portfolio span a diverse set of topics, including:

  • data standardization at the point of care;
  • improving the utility of disease registries and public health surveillance systems;
  • empowering patients with improved access to health data and the ability to direct it towards research; and
  • leveraging national standards to develop new applications to link data systems.

Five core research functionalities. Each funded project focuses on research that advances at least one of the five core research functionalities critical to the PCOR data infrastructure, with many projects spanning multiple functionalities. The five core research functionalities are:

  1. Collection of Participant-Provided Information;
  2. Standardized Collection of Standardized Clinical Data;
  3. Linking of Clinical and Other Data for Research;
  4. Use of Clinical Data for Research; and
  5. Use of Enhanced Publicly-Funded Data Systems for Research.

A December 2017 evaluation of the OS-PCORTF portfolio, entitled Building Data Capacity for Patient-Centered Outcomes Research in HHS: A Formative Evaluation of 2012-2016 Projects, reported significant progress across all five core research functionalities.

Next steps. The report concludes that the next to step to fully realizing the OS-PCORTF projects’ goals is optimizing the utility of their products. To that end, in 2018 and 2019, ASPE plans to continue identifying opportunities to apply the OS-PCORTF products to known gaps in knowledge and technical solutions in the context of the complex legal and regulatory environment in which PCOR research is conducted.

ASPE believes that the gaps that the OS-PCORTF addresses, from products that ease data exchange from both a technical and a contracting perspective, to standards and services that improve data quality and integration of data from multiple sources, among many other functionalities, are sorely needed in PCOR. ASPE suggests their broad dissemination at conferences and via white papers, demonstration via webinars and other learning opportunities, and the creation of a platform or website through which the products can be made publicly available.

ASPE also suggests that the 2018 OS-PCORTF Workshop represents one such opportunity to capture the attention of potential end users and to ensure these products are made available to them for PCOR. ASPE believes that involving PCORI in the upcoming workshop could be a productive strategy to bring the right audience to the table and coordinate messaging on these important products.

SOURCE: 2017 Annual Report of HHS Projects to Build Data Capacity for Patient-Centered Outcomes Research, July 24, 2018.
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