Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study

Robling, Michael; Hood, Kerenza; Houston, Helen; Pill, Roisin; Fay, Joe; Evans, H. M.

doi:10.1136/jme.2003.005157

Cited by 111 publications

(116 citation statements)

References 21 publications

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“…[8][9][10][11][12] Several high-profile marketing cases involving national retailers 13 and national security measures by the US government 14 have heightened public sensitivity about electronic privacy in other settings.…”

Section: Introductionmentioning

confidence: 99%

Are Patients With Cancer Less Willing to Share Their Health Information? Privacy, Sensitivity, and Social Purpose

Grande¹,

Asch²,

Wan³

et al. 2015

JOP

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Purpose: Growing use of electronic health information increases opportunities to build population cancer databases for research and care delivery. Understanding patient views on reuse of health information is essential to shape privacy policies and build trust in these initiatives. Methods:We randomly assigned nationally representative participants (N ϭ 3,336) with and without prior cancer to six of 18 scenarios describing different uses of electronic health information. The scenarios varied the user, use, and sensitivity of the information. Participants rated each scenario on a scale of 1 to 10 assessing their willingness to share their electronic health information. We used conjoint analysis to measure the relative importance of each attribute (ie, use, user, and sensitivity). Results:Participants with and without a prior diagnosis of cancer had a similar willingness to share health information (0.27; P ϭ .42). Both cancer and noncancer participants rated the purpose of information use as the most important factor (importance weights, 67.1% and 45.6%, respectively). For cancer participants, the sensitivity of the information was more important (importance weights, 29.8% v 1.2%). However, cancer participants were more willing to share their health information when the information included more sensitive genetic information (0.48; P ϭ .015). Cancer and noncancer respondents rated uses and users similarly. Conclusion:The information sharing preferences of participants with and without a prior diagnosis of cancer were driven mainly by the purpose of information reuse. Although conventional thinking suggests patients with cancer might be less willing to share their health information, we found participants with cancer were more willing to share their inherited genetic information.

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Section: Introductionmentioning

confidence: 99%

Are Patients With Cancer Less Willing to Share Their Health Information? Privacy, Sensitivity, and Social Purpose

Grande¹,

Asch²,

Wan³

et al. 2015

JOP

View full text Add to dashboard Cite

show abstract

“…Many of the earlier surveys focused on consumer consent issues regarding secondary use of personal medical records [6,12,14,24]. The debate had been over simplified into 'consent must be gained' or 'consent is not required'.…”

Section: Discussionmentioning

confidence: 99%

“…Focus group participants included 49 members of the general public and four non-medical members of local community health councils [12]. The primary care setting provided ready access to patients who participated in the survey and there was general support for secondary use of medical data.…”

Section: Earlier Surveys Of Consumers View Of Secondary Uses Of Medicmentioning

confidence: 99%

Emerging consumers view of secondary uses of medical data

Heath

2010

2010 IEEE International Symposium on Technology and Society

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Results of a pilot public opinion survey regarding privacy and secondary uses of medical data are presented. Data was gathered using a self administered household survey. The setting for the survey was regional New South Wales and Darwin, Australia. 482 surveys were distributed in randomly chosen residential blocks. The main outcome measures included respondent views regarding concern for personal privacy and support for secondary uses of medical data for utilitarian purposes. 165 surveys were returned giving a 34.2% response rate. Aspects of the Restricted Access Limited Control theory of privacy were explored via the survey. Results indicate the value of further research to give insight into operationalising RALC to support secondary uses of medical data for health research. Disciplines Physical Sciences and Mathematics

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“…They are also concerned that sensitive information could be widely used and distributed without their knowledge. [5,6,7].These concerns have led to international efforts to enhance the protection afforded to data from medical records. In United States, the health insurance portability and accountability act (HIPPA) [8,9] directs the secretary of Health and human services to establish safeguards for the privacy of individually identifiable health information.…”

Section: Methodsmentioning

confidence: 99%

Ethical and Legal Issues for Medical Data Mining

Anandakumar¹,

Ashwinkumar²

2010

IJCA

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This Paper emphasizes on uniqueness and specialty of medical data mining Healthcare related data mining is one of the most rewarding and challenging areas in application of data mining and knowledge discovery. The challenges are due to the data sets which are large, complex, heterogeneous, hierarchical, time series and of varying quality. The available healthcare datasets are fragmented and distributed in nature, thereby making the process of data integration a challenged task. The major issues related to tackle are ethical, legal and social aspects. Due to the lack of domain knowledge on the analyst's behalf it becomes necessary for an active collaboration between domain specialist and data miner with ethical and legal clearance from specialized hospitals. Medical datasets constitute a significant part of medical research. Ethical concerns, especially issues of confidentiality have resulted in the introduction of stringent regulations in doing this form of research. The merits and demerits of these new regulations are debated all over the world. The introduction of regulations for individual informed consent will prove costly to Indian physicians. Attempts are being made to evolve a consensus in which ethical concerns are given due respect without discouraging research.

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Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study

Cited by 111 publications

References 21 publications

Are Patients With Cancer Less Willing to Share Their Health Information? Privacy, Sensitivity, and Social Purpose

Are Patients With Cancer Less Willing to Share Their Health Information? Privacy, Sensitivity, and Social Purpose

Emerging consumers view of secondary uses of medical data

Ethical and Legal Issues for Medical Data Mining

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