Patients' views about the use of their personal information from general practice medical records in health research: A qualitative study in Ireland

Family Practice

Volumn 30, Issue 1, 2013, Pages 105-112

  Clerkin, P ^a   Buckley, B S ^a   Murphy, A W ^a   Macfarlane, A E ^b  

^a NATIONAL UNIVERSITY OF IRELAND   (Ireland)

^b UNIVERSITY OF LIMERICK   (Ireland)

Author keywords

Consultation; Doctor patient relationship; Medical ethics; Primary care; Research ethics informed consent

Indexed keywords

ADULT; AGE; AGED; ARTICLE; EMPLOYMENT STATUS; FEMALE; FINANCE; GENERAL PRACTICE; HUMAN; INFORMED CONSENT; INTERVIEW; IRELAND; MALE; MEDICAL RECORD; MEDICAL RESEARCH; PATIENT ATTITUDE; PATIENT INFORMATION; QUALITATIVE ANALYSIS; SEX DIFFERENCE; SOCIAL ASPECT;

ADOLESCENT; ADULT; AGED; ATTITUDE; BIOMEDICAL RESEARCH; CONFIDENTIALITY; FEMALE; FOCUS GROUPS; GENERAL PRACTICE; HEALTH RECORDS, PERSONAL; HUMANS; IRELAND; MALE; MIDDLE AGED; PATIENTS; QUALITATIVE RESEARCH; RECORDS AS TOPIC; YOUNG ADULT;

EID: 84873808111     PISSN: 02632136     EISSN: 14602229     Source Type: Journal    
DOI: 10.1093/fampra/cms036     Document Type: Article

References (23)

1. Al-Shahi R, Vousden C, Warlow C. Bias from requiring explicit consent from all participants in observational research: prospective, population based study. BMJ 2005; 331: 942-7.
2. Regidor E. The use of personal data from medical records and biological materials: ethical perspectives and the basis for legal restrictions in health research. Soc Sci Med 2004; 59(9): 1975-84.
3. Tu JV, Willison DJ, Silver FL et al. Impracticability of informed consent in the registry of the Canadian stroke network. N Engl J Med 2004; 350(14): 1414-21.
4. Personal Information in Medical Research. London: Medical Research Council, 2000.
5. Buckley BS, Murphy AW, MacFarlane AE. Public attitudes to the use in research of personal health information from general practitioners' records: a survey of the Irish general public. J Med Ethics 2011; 37: 50-5, doi:10.1136/jme.2010.037903.
6. Robling MR, Hood K, Houston H, Pill R, Fay J, Evans HM. Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. J Med Ethics 2004; 30: 104-9.
7. Kho ME, Duffett M, Willison DJ, Cook DJ, Brouwers MC. Written informed consent and selection bias in observational studies using medical records: systematic review. BMJ 2009; 338: b866.
8. Stone MA, Redsell SA, Ling JT, Hay AD. Sharing patient data: competing demands of privacy, trust and research in primary care. Br J Gen Pract 2005; 55: 783-9.
9. Barbour R. Doing focus groups. In: Flick U (ed). The SAGE Qualitative Research Kit. London: Sage, 1997.
10. Buckley B, Murphy AW, Byrne M, Glynn L. Selection bias resulting from the requirement for prior consent in observational research: a community cohort of people with ischaemic heart disease. Heart 2007; 93(9): 1116-20.
11. Kreuger RA, Casey MA. Focus Groups: A Practical Guide for Applied Research, 3rd ed. Thousand Oaks, CA: Sage, 2000.
12. Kitzinger J. Qualitative research. Introducing focus groups. BMJ 1995; 311: 299-302.
13. Kane E, O'Reilly-de Brún M. Doing Your Own Research. New York: Marion Boyars, 2001.
14. Meyer J. Using qualitative methods in health related action research. BMJ 2000; 320: 178-81.
15. Personal Data for Public Good: Using Health Information in Medical Research. London: The Academy of Medical Sciences, 2006. Available at http://www.acmedsci.ac.uk/p48prid5.html (accesed 19 July 2012).
16. Willison DJ, Keshavjee K, Nair K, Goldsmith C, Holbrook AM. Patients' consent preferences for research uses of information in electronic medical records: interview and survey data. BMJ 2003; 326(7385): 373-7.
17. The Use of Personal Health Information in Medical Research: General Public Consultation. London: Medical Research Council/Ipsos MORI2006. Available at http://www.ipsos-mori.com/Assets/Docs/Archive/Polls/mrc.pdf (accessed 19 July 2012).
18. Barrett G, Cassell JA, Peacocok JL, Coleman MP. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. BMJ 2006; 332: 1068-72.
19. Damschroder LJ, Pritts JL, Neblo MA et al. Patients, privacy and trust: patients' willingness to allow researchers to access their medical records. Soc Sci Med 2007; 64: 223-35.
20. Whiddett R, Hunter I, Engelbrecht J, Handy J. Patients' Attitudes towards Sharing Their Health Information: Final Report to Participants: Palmerston North, New Zealand: Health Informatics Research Group, Department of Information Systems, Massey University, 2005.
21. Whiddett R, Hunter I, Engelbrecht J, Handy J. Patients' attitrudes towards sharing their health information. Int J Med Inf 2006; 75: 530-41.
22. Clark AM, Findlay IN. Attaining adequate consent for the use of electronic patient records: an opt-out strategy to reconcile individuals' rights and public benefit. Public Health 2005; 119: 1003-10.
23. Willison DJ, Schwartz L, Abelson J et al. Alternatives to projectspecific consent for access to personal information for health research: what is the opinion of the Canadian public? J Am Med Inform Assoc 2007; 14: 706-12.