Linkage of clinical trial and administrative data: a survey of cancer patient preferences

  • A.E. Hay Canadian Cancer Trials Group; Queen’s University
  • Y.W. Leung Princess Margaret Cancer Centre
  • J.L. Pater Canadian Cancer Trials Group
  • M.C. Brown University Hospital Network
  • E. Bell Clinical Trials Ontario
  • D. Howell University Hospital Network
  • Z. Kassam University Hospital Network; Southlake Regional Health Centre
  • S. Willing Kingston General Hospital
  • C. Tian University Hospital Network
  • G. Liu University Hospital Network
Keywords: Survey, clinical trials, consent, data linkage

Abstract

Background

Personal health information, including diagnoses and hospital admissions, is routinely collected in administrative databases. Patients enrolling on clinical trials consent to separate collection and storage of their personal health information. We evaluated patient preferences for linking long-term data from administrative databases with clinical trials.

Methods

Adults with cancer attending outpatient clinics at 3 Ontario hospitals were surveyed about their willingness, when faced with the hypothetical scenario of participating in a clinical trial, to provide potentially identifying information such as initials and date of birth to facilitate long-term research access to normally deidentified publicly collected databases.

Results

Of 569 patients surveyed, 335 (59%) were women, 452 (79%) were white, 385 (68%) had a post-secondary education, and 386 (68%) had never participated in a clinical trial. Median age in the group was 59 years. Most participants (93%, cohort 1) would allow long-term access to their information and allow personal information to be used to match clinical trial with administrative data. At the time of clinical trial closure, two thirds of participants (68%, cohort 2) preferred to make additional clinical information available through linkage with administrative databases, and 8 (9%) preferred to have no further information made available to researchers. No significant differences were found in the subset of patients who were part of a clinical trial and those who had never participated (p = 0.65).

Interpretation

Almost all patients would allow a clinical trial research team to access their confidential information, providing a more comprehensive assessment of an intervention’s long-term risks and benefits.


Author Biographies

A.E. Hay, Canadian Cancer Trials Group; Queen’s University
Department of Medicine
Y.W. Leung, Princess Margaret Cancer Centre
Department of Supportive Care
Z. Kassam, University Hospital Network; Southlake Regional Health Centre

Department of Radiation Oncology, Stronach Regional Cancer Centre

S. Willing, Kingston General Hospital

Cancer Centre of Southeastern Ontario

Published
2017-06-28
How to Cite
Hay, A., Leung, Y., Pater, J., Brown, M., Bell, E., Howell, D., Kassam, Z., Willing, S., Tian, C., & Liu, G. (2017). Linkage of clinical trial and administrative data: a survey of cancer patient preferences. Current Oncology, 24(3), 161-167. https://doi.org/10.3747/co.24.3400
Section
Clinical Trials