Effect of public deliberation on patient attitudes regarding consent and data use in a learning health care system for oncology

Reshma Jagsi, Kent A. Griffith, Rochelle D. Jones, Chris Krenz, Michele Gornick, Rebecca Spence, Raymond De Vries, Sarah T. Hawley, Robin Zon, Sage Bolte, Navid Sadeghi, Richard L. Schilsky, Angela R. Bradbury

Research output: Contribution to journalArticlepeer-review

15 Scopus citations


PURPOSE We sought to generate informed and considered opinions regarding acceptable secondary uses of deidentified health information and consent models for oncology learning health care systems. METHODS Day-long democratic deliberation sessions included 217 patients with cancer at four geographically and sociodemographically diverse sites. Patients completed three surveys (at baseline, immediately after deliberation, and 1-month follow-up). RESULTS Participants were 67.3% female, 21.7% black, and 6.0% Hispanic. The most notable changes in perceptions after deliberation related to use of deidentified medical-record data by insurance companies. After discussion, 72.3% of participants felt comfortable if the purpose was to make sure patients receive recommended care (v 79.5% at baseline; P = .03); 24.9% felt comfortable if the purpose was to determine eligibility for coverage or reimbursement (v 50.9% at baseline; P, .001). The most notable change about secondary research use related to believing it was important that doctors ask patients at least once whether researchers can use deidentified medical-records data for future research. The proportion endorsing high importance decreased from baseline (82.2%) to 68.7% immediately after discussion (P, .001), and remained decreased at 73.1% (P = .01) at follow-up. At follow-up, non-Hispanic whites were more likely to consider it highly important to be able to conduct medical research with deidentified electronic health records (96.8% v 87.7%; P = .01) and less likely to consider it highly important for doctors to get a patient’s permission each time deidentified medical record information is used for research (23.2% v 51.6%; P, .001). CONCLUSION This research confirms that most patients wish to be asked before deidentified medical records are used for research. Policies designed to realize the potential benefits of learning health care systems can, and should be, grounded in informed and considered public opinion.

Original languageEnglish (US)
Pages (from-to)3203-3211
Number of pages9
JournalJournal of Clinical Oncology
Issue number34
StatePublished - 2019

ASJC Scopus subject areas

  • Oncology
  • Cancer Research


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