Reimagining Patient Data Access for Researchers

Sep 1, 2023, 00:00
10.1016/j.jval.2023.06.012
https://www.valueinhealthjournal.com/article/S1098-3015(23)03029-2/fulltext
Title : Reimagining Patient Data Access for Researchers
Citation : https://www.valueinhealthjournal.com/action/showCitFormats?pii=S1098-3015(23)03029-2&doi=10.1016/j.jval.2023.06.012
First page : 1329
Section Title : THEMED SECTION: DATA, PRIVACY, AND HEALTH
Open access? : No
Section Order : 1329

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.

Categories :
  • Academic & Educational
  • Data Protection, Integrity, & Quality Assurance
Tags :
  • electronic health record data access
  • patient data for research
  • patient data protection
Regions :
  • Global
ViH Article Tags :