Patients' consent preferences regarding the use of their health information for research purposes: A qualitative study

Journal of Health Services Research and Policy

Volumn 9, Issue 1, 2004, Pages 22-27

  Nair, Kalpana ^a   Willison, Donald ^a   Holbrook, Anne ^a   Keshavjee, Karim ^a  

^a CENTRE FOR EVALUATION OF MEDICINES   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

HEALTH STATUS;

ADULT; ARTICLE; CLINICAL ARTICLE; DECISION MAKING; ELECTRONIC MEDICAL RECORD; FEMALE; HUMAN; INFORMED CONSENT; MALE; MEDICAL INFORMATION SYSTEM; MEDICAL RESEARCH; PATIENT INFORMATION; PRIORITY JOURNAL; QUALITATIVE ANALYSIS;

BIOMEDICAL AND BEHAVIORAL RESEARCH; EMPIRICAL APPROACH;

ACCESS TO INFORMATION; ADOLESCENT; ADULT; BIOMEDICAL RESEARCH; DISCLOSURE; FEMALE; HUMANS; INFORMED CONSENT; MALE; MEDICAL RECORDS SYSTEMS, COMPUTERIZED; MIDDLE AGED; ONTARIO; PATIENT SATISFACTION; QUALITATIVE RESEARCH;

EID: 0842305807     PISSN: 13558196     EISSN: None     Source Type: Journal    
DOI: 10.1258/135581904322716076     Document Type: Article

References (25)

1. Information Policy Unit. Building the information core: protecting and using confidential patient information: a strategy for the NHS. London: Department of Health, 2001
2. Canada Health Infoway Inc. Infoway invests in seven partnership projects to accelerate the development of an electronic health record across Canada. Toronto, Canada: Health Infoway Inc., 2002 (www.canadahealthinfoway.ca/)
3. Als A. The desk top computer as a magic box: patterns of behaviour connected with the desk-top computer; GPs' and patients' perceptions. Family Practice 1997; 14: 17-23
4. Legler J, Oates R. Patients' reactions to physician use of a computerized medical record system during clinical encounters. Journal of Family Practice 1993; 37: 241-244
5. Mitchell E, Sullivan F. A descriptive feast but an evaluative famine: systematic review of published articles on primary care computing during 1980-97. BMJ 2001; 322: 279-282
6. Ornstein S, Bearden A. Patient perspectives on computer-based medical records. Journal of Family Practice 1994; 38: 606-610
7. Potter A. Computers in general practice. Journal of the Royal College of General Practitioners 1981; 31: 683-685
8. Ridsdale L, Hudd S. Computers in the consultation: the patient's view. British Journal of General Practice 1994; 44: 367-369
9. Thornett A. Computer use must not affect doctor-patient relationship. BMJ 2001; 322: 1369
10. Brownridge G, Herzmark G, Wall T. Patient reactions to doctors' computer use in general practice consultations. Social Science and Medicine 1985; 20: 47-52
11. Upshur R, Morin B, Goel V. The privacy paradox: laying Orwell's ghost to rest. Canadian Medical Association Journal 2001; 165: 307-309
12. Woolf SH, Rothemich SF, Johnson RE, Marsland DW. Selection bias from requiring patients to give consent to examine data for health services research. Archives of Family Medicine 2000; 9: 1111-1118
13. Yawn BP, Yawn RA, Geier R, Xia Z, Jacobsen SJ. The impact of requiring patient authorization for use of data in medical records research. Journal of Family Practice 1998; 47: 361-365
14. NHS Information Authority in conjunction with The Consumers' Association and Health Which. Share with care: people's views on consent and confidentiality of patient information. Birmingham: NHSIA, 2002
15. Keshavjee K, Willison D, Holbrook A, Kyba R. Communicating privacy and confidentiality issues to physicians and patients in a research study using electronic medical records. Proceedings of the American Medical Informatics Association Symposium, 1999: 1098 (abstract)
16. Baker R, Shiels C, Stevenson K, Fraser R, Stone M. What proportion of patients refuse consent to data collection from their records for research purposes? British Journal of General Practice 2000; 50: 655-656
17. Creswell J. Qualitative inquiry and research design: choosing among five traditions. Thousand Oaks, CA: Sage, 1998
18. QSR NUD*IST. Melbourne, Australia: QSR International, 1997
19. Canadian Medical Association. Canadians highly value the privacy and confidentiality of their health information. Ottawa: Canadian Medical Association, 1999. Available from: www.cma.ca/cma/common/displayPage.do?pageId=/ staticContent/HTML/N0/12/advocacy/news/1999/11-29. htm (accessed 16 August 2001)
20. Policy and Planning Division SH. Consultation paper on protection of personal health information. Available from: http://www.health.gov.sk.ca/ph_br_health_leg_phiq/ default.htm (accessed 19 September 2001)
21. Snowdon C, Garcia J, Elbourne D. Making sense of randomization: responses of parents of critically ill babies to random allocation of treatment in a clinical trial. Social Science and Medicine 1997; 45: 1337-1355
22. Singer E, Shapiro R, Jacobs L. Privacy of health care data: what does the public know? How much do they care? In: Chapman A, ed. Health care and information ethics: protecting fundamental human rights. Kansas City, MO: Sheed & Ward, 1997: 393-418
23. Morgan R. Privacy and the community. Sydney, Australia: Office of the Federal Privacy Commissioner, 2001
24. Smith G, Wales C. The theory and practice of citizens' juries. Policy and Politics 1999; 27: 295-308
25. Lenaghan J. Involving the public in rationing decisions. The experience of citizens juries. Health Policy 1999; 49: 45-61