Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research

JAMA Netw Open. 2019 Aug 2;2(8):e199550. doi: 10.1001/jamanetworkopen.2019.9550.


Importance: Patients increasingly demand transparency in and control of how their medical records and biospecimens are shared for research. How much they are willing to share and what factors influence their sharing preferences remain understudied in real settings.

Objectives: To examine whether and how various presentations of consent forms are associated with differences in electronic health record and biospecimen sharing rates and whether these rates vary according to user interface design, data recipients, data and biospecimen items, and patient characteristics.

Design, setting, and participants: For this survey study, a data and biospecimen sharing preference survey was conducted at 2 academic hospitals from May 1, 2017, to September 31, 2018, after simple randomization of patients to 1 of 4 options with different layout and formats of indicating sharing preferences: opt-in simple, opt-in detailed, opt-out simple, and opt-out detailed.

Interventions: All participants were presented with a list of data and biospecimen items that could be shared for research within the same health care organization or with other nonprofit or for-profit institutions. Participating patients were randomly asked to select the items that they would share (opt-in) or were asked to select items they would not share (opt-out). Patients in these 2 groups were further randomized to select only among 18 categories vs 59 detailed items (simple vs detailed form layout).

Main outcomes and measures: The primary end points were the percentages of patients willing to share data and biospecimen categories or items.

Results: Among 1800 eligible participants, 1246 (69.2%) who completed their data sharing survey were included in the analysis, and 850 of these patients (mean [SD] age, 51.1 [16.7] years; 507 [59.6%] female; 677 [79.6%] white) responded to the satisfaction survey. A total of 46 participants (3.7%) declined sharing with the home institution, 352 (28.3%) with nonprofit institutions, and 590 (47.4%) with for-profit institutions. A total of 836 (67.1%) indicated that they would share all items with researchers from the home institution. When comparing opt-out with opt-in interfaces, all 59 sharing choice variables (100%) were associated with the sharing decision. When comparing simple with detailed forms, only 14 variables (23.7%) were associated with the sharing decision.

Conclusions and relevance: The findings suggest that most patients are willing to share their data and biospecimens for research. Allowing patients to decide with whom they want to share certain types of data may affect research that involves secondary use of electronic health records and/or biosamples for research.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Biomedical Research* / ethics
  • Biomedical Research* / methods
  • Decision Making*
  • Electronic Health Records* / ethics
  • Female
  • Humans
  • Information Dissemination* / ethics
  • Information Dissemination* / methods
  • Informed Consent* / ethics
  • Informed Consent* / psychology
  • Logistic Models
  • Male
  • Middle Aged
  • Patient Preference / psychology
  • Patient Preference / statistics & numerical data*
  • Specimen Handling* / ethics
  • Specimen Handling* / methods
  • Specimen Handling* / psychology
  • Young Adult