A survey of patient perspectives on the research use of health information and biospecimens

Abstract

BackgroundPersonal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research.MethodsA 45-item survey was distributed to a convenience sample of patients at an outpatient clinic in a large urban centre. The survey briefly addressed sociodemographic and illness characteristics. Opinions were sought on the research use of health information and biospecimens including consent preferences.ResultsTwo hundred eleven of 400 distributed surveys were completed (response rate 52.8 %). Respondents were generally supportive of medical research and trusting of researchers. Many respondents supported the use of their information and biospecimens for health research and also preferred consent be sought for use of health information and biospecimens. Some supported the use of their information and biospecimens for research without consent. There were significant differences in the opinions people offered regarding the research use of biospecimens compared to health information. Some respondent perspectives about consent were at odds with current regulatory and legal standards.ConclusionsClinical health data and biospecimens are valuable research resources, critical to the advancement of medicine. Use of these data for research requires balancing respect for individual autonomy, privacy and the societal interest in the greater good. Incongruence between some respondent perspectives and the regulatory standards suggest both a need for public education and review of legislation to increase understanding and ensure the public’s trust is maintained.Electronic supplementary materialThe online version of this article (doi:10.1186/s12910-016-0130-4) contains supplementary material, which is available to authorized users.

Canadians’ views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey

“…31 Although we could not calculate the recruitment/participation rate for the current survey, we suspect that many potential respondents, especially those who found the survey through social media, reviewed the consent page and perceived the survey as too long or too formal. As such, although we intended to recruit a larger, more generalizable sample than those in prior Canadian investigations that limited sampling to patients with specific diagnoses (182-235 respondents each), [17][18][19] our findings cannot be generalized to the entire Canadian population and must be interpreted cautiously.…”

“…Prior Canadian studies focused on a single issue (namely, consent preferences for research use of medical records) [14][15][16] or sampled patients with specific diagnoses. [17][18][19] In the present study, researchers and patient leaders from 3 national joint and skin disease organizations developed and distributed an online survey to benchmark the views of Canadians about the use of large sets of routinely collected data in health research.…”

Biological material collection to advance translational research and treatment of children with CNS tumours: position paper from the SIOPE Brain Tumour Group

“…Studies have shown that patients and their representatives, when given adequate information, are largely in favour of biomaterials not required for diagnostic procedures being made available for research projects. 71,72 However, important ethical, legal, privacy, and practical aspects relating to the collection, storage, shipment, and sharing of biomaterials need careful consideration (panel 2). For example, the legal definition of ownership of biomaterials and the guidelines for informed consent might vary between countries, 73 and should be considered in the context of individual patient care and international clinical trials.…”

Factors affecting willingness to share electronic health data among California consumers

“…EHR privacy concerns have been confirmed even among subjects who agree that EHRs are more efficient than paper records [17] and are not necessarily limited to individuals who are less familiar with computers, [18] although other studies contradict this [12, 19]. Higher education has been associated with the belief that EHRs will improve quality of health care and security [15] but also with a decreased willingness to provide access to personal health information [20, 21]. …”