Patients' consent preferences regarding the use of their health information for research purposes: a qualitative study

J Health Serv Res Policy. 2004 Jan;9(1):22-7. doi: 10.1258/135581904322716076.


Objective: To explore the consent preferences of patients whose health data are currently being used for research purposes.

Methods: Semi-structured interviews were conducted with 17 patients whose primary physicians were taking part in a study that utilized de-identified individual-level health information from their electronic medical record. All physicians practised in southwestern Ontario. All interviews were taped, transcribed verbatim and analysed using a constant comparative method. All transcripts and debriefing notes were read and reread to elicit general themes.

Results: Three main themes emerged from the data: patients recognized the need to balance their consent preferences with time pressures in the clinical encounter when deciding the nature of consent for a study; patients generally regarded the seeking of consent as being an issue of respect for them as individuals; and patients were also weighing their perceived benefits and concerns related to the research. For these patients, seeking their consent was an important step in research participation. For some patients, the sponsor and the research topic were factors that would influence their decision to provide consent.

Conclusion: Patients want their consent to be sought when their data are used for research purposes. This will involve explicitly informing patients that a study is taking place, providing written consent and offering regular updates about the study.

MeSH terms

  • Access to Information / psychology*
  • Adolescent
  • Adult
  • Biomedical Research*
  • Disclosure*
  • Female
  • Humans
  • Informed Consent / psychology*
  • Male
  • Medical Records Systems, Computerized / statistics & numerical data*
  • Middle Aged
  • Ontario
  • Patient Satisfaction*
  • Qualitative Research