Reimagining Patient Data Access for Researchers

Stephen T. Parente, Charles E. Phelps

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

Objectives: Widespread use of electronic health records (EHRs) now makes it feasible to expand beyond health insurance claims data to include full EHR data for health economics and outcomes research (HEOR) studies. We seek to develop ways to maximize researcher access to such data while strongly protecting patients’ privacy rights. Methods: We analyzed alternative organizational structures and intellectual property rights assignments as they now exist and compared these with structures and intellectual property rights assignments that would maximize access to data for HEOR studies and minimize transactions costs. We analyzed data protection requirements and financial incentives at 3 levels: patient decision making, patients’ data aggregators, and final aggregation across patients’ data. Results: Creating new HEOR data systems requires new organizations and funding, while also protecting patients’ data privacy rights. The Cures Act enables a new market for trusted third parties (TTPs) to aggregate patients’ data. New secondary data aggregators must combine individuals’ aggregated EHRs into usable HEOR databases. Maximal patient participation requires complete health insurance coverage of costs that healthcare providers charge for transmitting patients’ data to TTPs. The new secondary system to aggregate data from many TTPs into usable HEOR optimally has external funding. Conclusions: Important steps remain uncompleted to achieve maximally available HEOR data while protecting patients’ privacy rights. HEOR information is a public good, so private incentives to support creation and operation of this new system remain incomplete. Public and private support can expand this system to optimally improve people's health.

Original languageEnglish (US)
Pages (from-to)1329-1333
Number of pages5
JournalValue in Health
Volume26
Issue number9
DOIs
StatePublished - Sep 2023
Externally publishedYes

Bibliographical note

Funding Information:
We answer these questions in reverse. We envision research funding would occur much as it now does, through grants from the National Institutes of Health, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, private foundations, state and local governments, and internal funding from researchers’ organizations, both academic and commercial. We envision that these grants would cover data preparation and transfer costs from PDQ Institutes to researchers and peer-review processes would assure quality of research projects proposed to PDQ Institutes. PDQ Institutes could make data available to researchers through secure data enclaves as has been already demonstrated by public and private data repositories such as CMS and the Health Care Cost Institute.

Funding Information:
Conflict of Interest Disclosures: Dr Parente reported receiving personal fees from American Action Forum, RoundtableRx, Pharma, Pfizer, and the World Bank, outside the submitted work. From 2013 to 2019, Dr Parente was a member of the Board of Directors of the Health Care Cost Institute, which is mentioned in this article. Dr Phelps reported receiving personal fees from EntityRisk, the Office of Health Economics, the University of Colorado, Innovation and Value Initiative, Pfizer, Society for Medical Decision Making, Caribbean Health Economics Symposium, and ISPOR outside of the submitted work. From 2015 to 2021, Dr Phelps was a member of the Board of Directors of the Health Care Cost Institute, which is mentioned in this article. No other disclosures were reported.

Publisher Copyright:
© 2023 International Society for Pharmacoeconomics and Outcomes Research, Inc.

Keywords

  • electronic health record data access
  • patient data for research
  • patient data protection

PubMed: MeSH publication types

  • Journal Article

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