Patient perspectives on the linkage of health data for research: Insights from an online patient community questionnaire.

Journal Article (Journal Article)

OBJECTIVE: To examine the patient perspective on the risks and benefits of linking existing data sources for research. MATERIALS AND METHODS: Between December 2015 and February 2016, we fielded a questionnaire in PatientsLikeMe, an online patient community representing over 2500 health conditions. The questionnaire was developed using subject matter expertise and patient feedback from a concept elicitation phase (N = 57 patients). The final questionnaire consisted of 37 items. RESULTS: Of n = 5741 who opened the email invitation, n = 3516 respondents completed the questionnaire (61.2%). Of these, 73.8% were women, 86.4% were Caucasian, 14.5% were 65 or older, and 44.9% had completed college or post-graduate education. Questionnaire respondents indicated that the most important benefits of sharing data were "helping my doctor make better decisions about my health" (94%) and "helping make new therapies available faster" (94%). The most important data sharing risk identified was health data being "stolen by hackers" (87%). Of 693 patients who were not comfortable with researchers accessing their de-identified data, most reported that their comfort levels would increase if they were able to learn how their data was protected (84%). In general, responders felt more comfortable when unique identifiers such as social security number (90%) and insurance ID (82%) were removed from the data for linkage and research use. DISCUSSION: The majority of patients in a US-based online community are comfortable with researchers accessing their de-identified data for research purposes. CONCLUSIONS: Developing methods to link databases minimizing the exposure of unique identifiers may improve patient comfort levels with linking data for research purposes.

Full Text

Duke Authors

Cited Authors

  • O'Brien, EC; Rodriguez, AM; Kum, H-C; Schanberg, LE; Fitz-Randolph, M; O'Brien, SM; Setoguchi, S

Published Date

  • July 2019

Published In

Volume / Issue

  • 127 /

Start / End Page

  • 9 - 17

PubMed ID

  • 31128837

Electronic International Standard Serial Number (EISSN)

  • 1872-8243

Digital Object Identifier (DOI)

  • 10.1016/j.ijmedinf.2019.04.003


  • eng

Conference Location

  • Ireland