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Article

Linkage of Clinical Trial and Administrative Data: A Survey of Cancer Patient Preferences

1
Canadian Cancer Trials Group, 10 Stuart Street, Kingston, ON K7L 3N6, Canada
2
Department of Medicine, Queen's University, Kingston, ON, Canada
3
Department of Supportive Care, Princess Margaret Cancer Centre, Toronto, ON, Canada
4
University Hospital Network, Toronto, ON, Canada
5
Clinical Trials Ontario, Toronto, ON, Canada
6
Department of Radiation Oncology, Stronach Regional Cancer Centre, Southlake Regional Health Centre, Newmarket, ON, Canada
7
Cancer Centre of Southeastern Ontario, Kingston General Hospital, Kingston, ON, Canada
*
Author to whom correspondence should be addressed.
Curr. Oncol. 2017, 24(3), 161-167; https://0-doi-org.brum.beds.ac.uk/10.3747/co.24.3400
Received: 4 March 2017 / Revised: 4 April 2017 / Accepted: 6 May 2017 / Published: 1 June 2017
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.
Keywords: survey; clinical trials; consent; data linkage survey; clinical trials; consent; data linkage
MDPI and ACS Style

Hay, A.E.; Leung, Y.W.; Pater, J.L.; Brown, M.C.; Bell, E.; Howell, D.; Kassam, Z.; Willing, S.; Tian, C.; Liu, G. Linkage of Clinical Trial and Administrative Data: A Survey of Cancer Patient Preferences. Curr. Oncol. 2017, 24, 161-167. https://0-doi-org.brum.beds.ac.uk/10.3747/co.24.3400

AMA Style

Hay AE, Leung YW, Pater JL, Brown MC, Bell E, Howell D, Kassam Z, Willing S, Tian C, Liu G. Linkage of Clinical Trial and Administrative Data: A Survey of Cancer Patient Preferences. Current Oncology. 2017; 24(3):161-167. https://0-doi-org.brum.beds.ac.uk/10.3747/co.24.3400

Chicago/Turabian Style

Hay, Annette E.; Leung, Y. W.; Pater, J. L.; Brown, M. C.; 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" Curr. Oncol. 24, no. 3: 161-167. https://0-doi-org.brum.beds.ac.uk/10.3747/co.24.3400

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