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JAMIA Open. 2018 Oct;1(2):195-201. doi: 10.1093/jamiaopen/ooy038. Epub 2018 Sep 24.

The association between method of solicitation and patient permissions for use of surplus tissues and contact for future research.

Author information

1
Biomedical Informatics Center, Medical University of South Carolina, Charleston, South Carolina, USA.
2
Department of Medicine, Medical University of South Carolina, Charleston, South Carolina, USA.

Abstract

Objective:

Obtaining patient permissions for research contact and for surplus tissue use as part of routine clinical practice can improve research participation. This study aims to investigate the difference in patient permissions for use of surplus tissues, and for direct contact for research, using 2 different methods of solicitation.

Methods:

An opt-in, population-based approach for gathering research permissions was implemented in 2 methods. The first method, applied a 2-item patient questionnaire delivered through the electronic health record patient portal. The questionnaire composed of 2 questions (1) whether de-identified surplus specimens may be used for research and (2) whether patients could be contacted about research. In the second method, the same questionnaire was physically presented in clinic within the clinical workflow. We used 1 to 1 propensity score matching and multivariate logistic regression to estimate the odds of obtaining permission and the difference between the 2 methods of solicitation.

Results:

The propensity score model matched 8044 observations (4114 submissions in each group). Among the in-clinic submission group, 70.13% provided permission for surplus tissue compared with 66.65% in the patient portal submission group (odds ratio [OR] = 1.20; 95% confidence interval [CI] 1.09-1.32; P < 0.001). Permission for future research contact was similar among in-clinic (65.07%) and patient portal submission (66.65%) groups (OR = 0.94; 95% CI 0.85-1.03; P = 0.175). These trends were consistent among European Americans and African American patients. However, among patients of other race, higher permission for both future contact (OR = 0.58; 95% CI 0.39-0.86; P < 0.007) and surplus tissue use (OR = 0.65; 95% CI 0.43-0.97; P = 0.036) was observed among patient portal submission.

Discussion:

Our findings suggest that in-clinic solicitation of patient permissions may provide the same opportunity to patients who do not use patient portals and may be associated with higher permission rate for surplus tissue. However, this was primary true for European American and African Americans patients. Patients of other race minorities might respond better to online approaches.

Conclusion:

Adopting a patient-centric approach that combines in-clinic and portal-based administration may be feasible and promising. Further research is required in this area.

KEYWORDS:

biobank studies; patients portals; permission to contact; permission to contact platform; permission to surplus tissue use; research voluntarism

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