Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK

International Journal of Medical Informatics

Volumn 84, Issue 4, 2015, Pages 237-247

  Riordan, Fiona ^a   Papoutsi, Chrysanthi ^a   Reed, Julie E ^a   Marston, Cicely ^b   Bell, Derek ^a   Majeed, Azeem ^a,c  

^a CHELSEA AND WESTMINSTER HOSPITAL NHS FOUNDATION TRUST   (United Kingdom)

^b LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE   (United Kingdom)

^c IMPERIAL COLLEGE LONDON   (United Kingdom)

Author keywords

Electronic health records; Information governance; Informed consent; Patient attitudes; Policy

Indexed keywords

HEALTH; HEALTH CARE; INFORMATION DISSEMINATION; PUBLIC HEALTH; PUBLIC POLICY; RECORDS MANAGEMENT; SURVEYS;

ELECTRONIC HEALTH RECORD; ELECTRONIC HEALTH RECORD (EHRS); HEALTH INFORMATION EXCHANGES; INFORMATION GOVERNANCE; INFORMED CONSENT; NATIONAL HEALTH SERVICES; PATIENT ATTITUDES; SOCIO-DEMOGRAPHIC CHARACTERISTICS;

ELECTRONIC DOCUMENT EXCHANGE;

ADULT; AGED; ARTICLE; ATTITUDE TO COMPUTERS; AWARENESS; CROSS-SECTIONAL STUDY; EDUCATIONAL STATUS; ELECTRONIC MEDICAL RECORD; ETHNIC GROUP; FEMALE; HEALTH CARE PLANNING; HEALTH SERVICE; HUMAN; INFORMED CONSENT; MAJOR CLINICAL STUDY; MALE; MEDICAL RESEARCH; MIDDLE AGED; PATIENT ATTITUDE; PRIMARY MEDICAL CARE; PRIORITY JOURNAL; PUBLIC OPINION; QUESTIONNAIRE; SECONDARY HEALTH CARE; UNITED KINGDOM; YOUNG ADULT; ADOLESCENT; ATTITUDE TO HEALTH; HEALTH CARE PERSONNEL; HEALTH SERVICES RESEARCH; PATIENT; PSYCHOLOGY;

ADOLESCENT; ADULT; AGED; ATTITUDE TO HEALTH; CROSS-SECTIONAL STUDIES; ELECTRONIC HEALTH RECORDS; FEMALE; GREAT BRITAIN; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH PERSONNEL; HEALTH SERVICES RESEARCH; HUMANS; INFORMED CONSENT; MALE; MIDDLE AGED; PATIENTS; PUBLIC OPINION; SURVEYS AND QUESTIONNAIRES; YOUNG ADULT;

EID: 84923021207     PISSN: 13865056     EISSN: 18728243     Source Type: Journal    
DOI: 10.1016/j.ijmedinf.2015.01.008     Document Type: Article

References (53)

1. NHS England Safer Hospitals, Safer Wards: Achieving an Integrated Digital Care Record 2013, NHS England, London.
2. Department of Health The power of information: putting all of us in control of the health and care information we need 2012, Department of Health, London.
3. Department of Health NHS Challenged to Go Paperless by 2018 2013, Available from 〈https://www.gov.uk/government/news/jeremy-hunt-challenges-nhs-to-go-paperless-by-2018--2〉 [cited 2013 August].
4. NHS England Care Episode Statistics: Technical Specification of the GP Extract 2013.
5. Department of Health Launch of the Clinical Practice Research Datalink 2011, Available from 〈https://www.gov.uk/government/news/launch-of-the-clinical-practice-research-datalink〉.
6. Chen Y.-c., et al. Academic Impact of a Public Electronic Health Database: Bibliometric Analysis of Studies Using the General Practice Research Database 2011, vol. 6:1-7.
7. Majeed A. Sources, uses, strengths and limitations of data collected in primary care in England. Health Stat. Q. 2004, 21:5-14. (Office for National Statistics).
8. Information Commissioners Office Statement on Care Data 2013, Available from 〈http://ico.org.uk/for_organisations/sector_guides/health/care_data〉 [cited 2013 August].
9. medConfidential A New Threat to Your Medical Privacy 2013, Available from 〈http://medconfidential.org/wp-content/uploads/2013/04/New-threat-to-medical-privacy_medConfidential_06Feb13.pdf〉.
10. PulseToday NHS Data Extraction Programme Poses 'Enormous Threat' to Privacy 2013, Available from 〈http://www.pulsetoday.co.uk/your-practice/practice-topics/it/nhs-data-extraction-programme-poses-enormous-threat-to-privacy/20004575.article〉 [cited 2013 August].
11. EHealthInsider GP Group Does Care. Data Campaign 2013, Available from 〈http://www.ehi.co.uk/news/EHI/8801/gp-group-does-care.data-campaign〉 [cited 2013 August].
12. Brown I., Brown L., Korff D. Using NHS Patient Data for Research without Consent. Law, Innov. Technol. 2010, 2(2):219-258.
13. Faden R.R., Beauchamp T.L., History A. Theory of Informed Consent 1986, Oxford University Press, New York, NY.
14. Young R. Informed consent and patient autonomy. A Companion to Bioethics 2010, Wiley-Blackhall, Oxford, UK.
15. Medical Research Council The Use of Personal Health Information in Medical Research 2007, Medical Research Council, UK.
16. Robling M.R. Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. J. Med. Ethics 2004, 30:104-109.
17. Clark A.M., Findlay I.N. Attaining adequate consent for the use of electronic patient records: an opt-out strategy to reconcile individuals' rights and public benefit. Public Health 2005, 119:1003-1010.
18. Kaye J. The tension between data sharing and the protection of privacy in genomics research. Annu. Rev. Genomics Hum. Genet. 2012, 13:415-431.
19. Kluge E.-H.W. Informed consent and the security of the electronic health record (EHR): some policy considerations. Int. J. Med. Inform. 2004, 73:229-234.
20. Caldicott F. Information to Share or Not to Share 2013, The Information Governance Review, London.
21. Buckley B.S., Murphy A.W., MacFarlane A.E. 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, 37:50-55.
22. Shickle D., et al. Patient Electronic Record Information and Consent (PERIC)-Public Attitudes to Protection and Use of Personal Health Information 2002, University of Sheffield, Sheffield.
23. Weitzman E.R., et al. Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users. BMC Med. Inform. Decis. Mak. 2012, 12:p39.
24. Whiddett R., et al. Patients' attitudes towards sharing their health information. Int. J. Med. Inform. 2006, 75:530-541.
25. Willison D., Schwartz L., Abelson J. 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. 2007, 706-712.
26. Willison D.J., et al. Consent for use of personal information for health research: do people with potentially stigmatizing health conditions and the general public differ in their opinions?. BMC Med. Ethics 2009, 10:10.
27. Barrett G., et al. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. BMJ (Clin. Res. Ed.) 2006, 332:1068-1072.
28. Willison D.J., et al. Information in practice. Patient consent preferences for research uses of information in electronic medical records: interview and survey data. BMJ 2003, 326:1-5.
29. Clerkin P., et al. Patients' views about the use of their personal information from general practice medical records in health research: a qualitative study in Ireland. Fam. Pract. 2013, 30:105-112.
30. Damschroder L.J., et al. Patients, privacy and trust: patients' willingness to allow researchers to access their medical records. Soc. Sci. Med. 1982, 64:223-235. 2007.
31. Haddow G., et al. 'Nothing is really safe': a focus group study on the processes of anonymizing and sharing of health data for research purposes. J. Eval. Clin. Pract. 2011, 17:1140-1146.
32. Stevenson F., et al. Use of electronic patient records for research: views of patients and staff in general practice. Fam. Pract. 2013, 30:227-232.
33. Woolf S.H., et al. Selection bias from requiring patients to give consent to examine data for health services research. Arch. Fam. Med. 2009, 9:1111-1118.
34. Dunn K.M., et al. Patterns of consent in epidemiologic research: evidence from over 25,000 responders. Am. J. Epidemiol. 2004, 159:1087-1094.
35. Young A., Dobson A., Byles J.E. Health services research using linked records: who consents and what is the gain?. Austr. N.Z. J. Public Health 2001, 25:417-420.
36. Campbell B., et al. Extracting information from hospital records: what patients think about consent. Qual. Saf. Health Care 2007, 16:404-408.
37. King T., Brankovic L., Gillard P. Perspectives of Australian adults about protecting the privacy of their health information in statistical databases. Int. J. Med. Inform. 2012, 81:279-289.
38. NHS Connecting for Health Summary of Responses to the Consultation on the Additional Uses of Patient Data 27th November 2009 2009, 1-92. NHS Connecting for Health, London.
39. EKOS Research Associates Electronic Health Information and Privacy Survey: What Canadians Think-2007 2007, EKOS Research Associates, Canada.
40. Huang N., et al. Record linkage research and informed consent: who consents?. BMC Health Serv. Res. 2007, 7:18.
41. Page S.A., Mitchell I. Patients' opinions on privacy, consent, and the disclosure of health information for medical research. Chron. Dis. Can. 2006, 27:60-67.
42. Jacobsen S.J., et al. Potential effect of authorization bias on medical record research. Mayo Clinic Proceedings 1999, 330-338. Mayo Clinic, vol. 74.
43. Hill E.M., et al. "Let's get the best quality research we can": public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study. BMC Med. Res. Methodol. 2013, 13:p72.
44. Kho M.E., et al. Written informed consent and selection bias in observational studies using medical records: systematic review. BMJ 2009, 338:1-8.
45. Parker M. When is research on patient records without consent ethical?. J. Health Serv. Res. Pol. 2005, 10:183-186.
46. Bratan T., Stramer K., Greenhalgh T. 'Never heard of it'-understanding the public's lack of awareness of a new electronic patient record. Health Expect. 2010, 13:379-391. (an international journal of public participation in health care and health policy).
47. Adams T., et al. Information in practice lessons from the central Hampshire electronic health record pilot project: issues of data protection and consent. BMJ 2004, 328:871-874.
48. Ancker J.S., et al. Consumer experience with and attitudes toward health information technology: a nationwide survey. J. Am. Med. Inform. Assoc.: JAMIA 2013, 20:152-156.
49. Luchenski S., et al. Survey of patient and public perceptions of electronic health records for healthcare, policy and research: study protocol. BMC Med. Inform. Dec. Mak. 2012, 12:p40.
50. Knies G., Burton J., Sala E. Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population. BMC Health Serv. Res. 2012, 12:p52.
51. Luchenski A.S., et al. Patient and public views on electronic health records and their uses in the United Kingdom: cross-sectional survey. J. Med. Internet Res. 2013, 15(8):160.
52. Singleton P., Pagliari C., Detmer D. Critical Issues for Electronic Health Records Considerations from an Expert Workshop 2009.
53. EHealthInsider £1m National Leaflet Drop On Care. Data 2013, Available from 〈http://www.ehi.co.uk/news/EHI/8961/%C2%A31m-national-leaflet-drop-on-care.data〉.