RESEARCH ETHICS

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

M R Robling¹, K Hood¹, H Houston¹, R Pill¹, J Fay² and H M Evans³

¹ Department of General Practice, University of Wales College of Medicine, Llanedeyrn Health Centre, Maelfa, Llanedeyrn, Cardiff, CF23 9PN.
² St Bartholomews Medical Centre, Manzil Way, Cowley, Oxford, OX4 1XB.
³ Centre for Arts and Humanities in Health and Medicine, University of Durham, Old Shire Hall, Durham, DH1 3HP.

Correspondence to:
Correspondence to:
M Robling
University of Wales College of Medicine; roblingmr{at}cardiff.ac.uk

Objectives: Recent legislative changes within the United Kingdom have stimulated professional debate about access to patient data within research. However, there is currently little awareness of public views about such research. The authors sought to explore attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient consent was not being sought.

Methods: 49 members of the public and four non-medical members of local community health councils in South Wales, UK gave their views on the value and acceptability of three current research scenarios, each describing access to data without patient consent.

Results: Among focus group participants, awareness of research in primary care was low, and the appropriateness of general practitioners as researchers was questioned. There was general support for research but also concerns expressed about data collection without consent. These included lack of respect and patient control over the process. Unauthorised access to data by external agencies was a common fear. Current data collection practices, including population based disease registers elicited much anxiety. The key informants were equally critical of the scenarios and generally less accepting.

Conclusions: This exploratory study has highlighted a number of areas of public concern when medical records are accessed for research without patient consent. Public acceptability regarding the use of medical records in research cannot simply be assumed. Further work is required to determine how widespread such views are and to inform those advising on confidentiality issues.

Keywords: confidentiality; informed consent; data protection; medical records; public opinion

CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this?

This article has been cited by other articles:

• Noble, S., Donovan, J., Turner, E., Metcalfe, C., Lane, A., Rowlands, M.-A., Neal, D., Hamdy, F., Ben-Shlomo, Y., Martin, R. (2009). Feasibility and cost of obtaining informed consent for essential review of medical records in large-scale health services research. J Health Serv Res Policy 14: 77-81 [Abstract] [Full Text]  
• Baird, W, Jackson, R, Ford, H, Evangelou, N, Busby, M, Bull, P, Zajicek, J (2009). Holding personal information in a disease-specific register: the perspectives of people with multiple sclerosis and professionals on consent and access. J. Med. Ethics 35: 92-96 [Abstract] [Full Text]  
• Campbell, B., Thomson, H., Slater, J., Coward, C., Wyatt, K., Sweeney, K. (2007). Extracting information from hospital records: what patients think about consent. Qual Saf Health Care 16: 404-408 [Abstract] [Full Text]  
• Willison, D. J., Schwartz, L., Abelson, J., Charles, C., Swinton, M., Northrup, D., Thabane, L. (2007). Alternatives to Project-specific Consent for Access to Personal Information for Health Research: What Is the Opinion of the Canadian Public?. J. Am. Med. Inform. Assoc. 14: 706-712 [Abstract] [Full Text]  
• Junghans, C., Jones, M. (2007). Consent bias in research: how to avoid it. Heart 93: 1024-1025 [Abstract] [Full Text]  
• Buckley, B., Murphy, A. W, Byrne, M., Glynn, L. (2007). Selection bias resulting from the requirement for prior consent in observational research: a community cohort of people with ischaemic heart disease. Heart 93: 1116-1120 [Abstract] [Full Text]  
• Haynes, C. L, Cook, G. A, Jones, M. A (2007). Legal and ethical considerations in processing patient-identifiable data without patient consent: lessons learnt from developing a disease register. J. Med. Ethics 33: 302-307 [Abstract] [Full Text]  
• Carlisle, J, Shickle, D, Cork, M, McDonagh, A (2006). Concerns over confidentiality may deter adolescents from consulting their doctors. A qualitative exploration.. J. Med. Ethics 32: 133-137 [Abstract] [Full Text]  
• Walley, T. (2006). Using personal health information in medical research. BMJ 332: 130-131 [Full Text]  
• Stead, M, Eadie, D, Gordon, D, Angus, K (2005). "Hello, hello--it's English I speak!": a qualitative exploration of patients' understanding of the science of clinical trials. J. Med. Ethics 31: 664-669 [Abstract] [Full Text]  
• Jenkins, G, Merz, J F, Sankar, P (2005). A qualitative study of women's views on medical confidentiality. J. Med. Ethics 31: 499-504 [Abstract] [Full Text]