Lack of Standardized Data Could Hinder PCORI Goals, GAO Finds
March 12, 2015 in News
The Patient-Centered Outcomes Research Institute’s plan to build an interoperable research network could be hindered by the lack of a standard data model and other issues, according to a Government Accountability Office report, FierceHealthIT reports (Hall, FierceHealthIT, 3/11).
PCORI is a not-for-profit organization created under the Affordable Care Act to fund comparative-effectiveness research (iHealthBeat, 8/6/14).
In December 2013, PCORI approved an initial $93.5 million funding round to build the data network, called PCORnet. The initial funding went to:
- 18 research networks focused on patients with specific health conditions who are interested in sharing health data; and
- 11 clinical data research networks with health care systems collecting data during care delivery (iHealthBeat, 12/19/13).
In addition, PCORI in December 2014 announced a new funding round as part of phase two of PCORnet. Specifically, the institute plans to provide 22 patient-powered research networks with three-year, $1.2 million awards (iHealthBeat, 12/29/14). PCORI also will provide funding to as many as 13 clinical data research networks as part of phase two (PCORI release, 12/22/14).
The institute will announce the award recipients in July or August, with the program’s earliest start date slated for October (iHealthBeat, 12/29/14).
Details of Report
For the report, which was mandated by the ACA, GAO researchers between April 2014 and March examined legislative requirements related to PCORI and analyzed information on PCORI’s funding processes, grant allocations and plans to disseminate and evaluate the effectiveness of research results.
GAO also interviewed PCORI officials and other stakeholders (GAO report, March 2015).
According to the report, stakeholders “expect that the process of mapping data to the common data model will be slow and resource intensive because of the lack of standardization among existing data maintained by [clinical data research networks] and [patient-powered research networks], such as data from electronic health records.”
PCORI officials expect that the issue could be resolved by a:
- Common data model; and
- Requirement that clinical data research networks hire staff with standardization expertise.
However, stakeholders also expressed concerns about the future sustainability and costs of the research network, and GAO said that each participating research network will be expected to provide a plan for sustainability. Stakeholders also expressed concerns about the completeness of information in the clinical data research networks and patient-powered research networks.
PCORI officials told GAO that they are collaborating with state Medicaid offices, private insurers and other relevant organizations to determine how clinical data research networks might be able to link claims information to their EHR data to bolster data completeness (FierceHealthIT, 3/11).