Tags

Type your tag names separated by a space and hit enter

Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK.
Int J Med Inform. 2015 Apr; 84(4):237-47.IJ

Abstract

BACKGROUND

The development of Electronic Health Records (EHRs) forms an integral part of the information strategy for the National Health Service (NHS) in the UK, with the aim of facilitating health information exchange for patient care and secondary use, including research and healthcare planning. Implementing EHR systems requires an understanding of patient expectations for consent mechanisms and consideration of public awareness towards information sharing as might be made possible through integrated EHRs across primary and secondary health providers.

OBJECTIVES

To explore levels of public awareness about EHRs and to examine attitudes towards different consent models with respect to sharing identifiable and de-identified records for healthcare provision, research and planning.

METHODS

A cross-sectional questionnaire survey was administered to adult patients and members of the public in primary and secondary care clinics in West London, UK in 2011. In total, 5331 individuals participated in the survey, and 3157 were included in the final analysis.

RESULTS

The majority (91%) of respondents expected to be explicitly asked for consent for their identifiable records to be accessed for health provision, research or planning. Half the respondents (49%) did not expect to be asked for consent before their de-identified records were accessed. Compared with White British respondents, those from all other ethnic groups were more likely to anticipate their permission would be obtained before their de-identified records were used. Of the study population, 59% reported already being aware of EHRs before the survey. Older respondents and individuals with complex patterns of interaction with healthcare services were more likely to report prior awareness of EHRs. Individuals self-identifying as belonging to ethnic groups other than White British, and those with lower educational qualifications were less likely to report being aware of EHRs than White British respondents and respondents with degree-level education, respectively. Those who reported being aware of EHRs were less likely to say they expected explicit consent to be sought before use of their de-identified record.

CONCLUSIONS

A large number of patients remain unaware of EHRs, while preference for implicit consent is stronger among those who report previous awareness. Differences in awareness levels and consent expectations between groups with different socio-demographic characteristics suggest that public education and information campaigns should target specific groups to increase public awareness and ensure meaningful informed consent mechanisms.

Authors+Show Affiliations

NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom.NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom. Electronic address: c.papoutsi@imperial.ac.uk.NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom.Department of Social and Environmental Health Research, London School of Hygiene and Tropical Medicine, London, United Kingdom.NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom.NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom; Department of Primary Care & Public Health, Imperial College London, London, United Kingdom.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

25649841

Citation

Riordan, Fiona, et al. "Patient and Public Attitudes Towards Informed Consent Models and Levels of Awareness of Electronic Health Records in the UK." International Journal of Medical Informatics, vol. 84, no. 4, 2015, pp. 237-47.
Riordan F, Papoutsi C, Reed JE, et al. Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK. Int J Med Inform. 2015;84(4):237-47.
Riordan, F., Papoutsi, C., Reed, J. E., Marston, C., Bell, D., & Majeed, A. (2015). Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK. International Journal of Medical Informatics, 84(4), 237-47. https://doi.org/10.1016/j.ijmedinf.2015.01.008
Riordan F, et al. Patient and Public Attitudes Towards Informed Consent Models and Levels of Awareness of Electronic Health Records in the UK. Int J Med Inform. 2015;84(4):237-47. PubMed PMID: 25649841.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK. AU - Riordan,Fiona, AU - Papoutsi,Chrysanthi, AU - Reed,Julie E, AU - Marston,Cicely, AU - Bell,Derek, AU - Majeed,Azeem, Y1 - 2015/01/20/ PY - 2014/02/14/received PY - 2015/01/12/revised PY - 2015/01/13/accepted PY - 2015/2/5/entrez PY - 2015/2/5/pubmed PY - 2015/12/15/medline KW - Electronic health records KW - Information governance KW - Informed consent KW - Patient attitudes KW - Policy SP - 237 EP - 47 JF - International journal of medical informatics JO - Int J Med Inform VL - 84 IS - 4 N2 - BACKGROUND: The development of Electronic Health Records (EHRs) forms an integral part of the information strategy for the National Health Service (NHS) in the UK, with the aim of facilitating health information exchange for patient care and secondary use, including research and healthcare planning. Implementing EHR systems requires an understanding of patient expectations for consent mechanisms and consideration of public awareness towards information sharing as might be made possible through integrated EHRs across primary and secondary health providers. OBJECTIVES: To explore levels of public awareness about EHRs and to examine attitudes towards different consent models with respect to sharing identifiable and de-identified records for healthcare provision, research and planning. METHODS: A cross-sectional questionnaire survey was administered to adult patients and members of the public in primary and secondary care clinics in West London, UK in 2011. In total, 5331 individuals participated in the survey, and 3157 were included in the final analysis. RESULTS: The majority (91%) of respondents expected to be explicitly asked for consent for their identifiable records to be accessed for health provision, research or planning. Half the respondents (49%) did not expect to be asked for consent before their de-identified records were accessed. Compared with White British respondents, those from all other ethnic groups were more likely to anticipate their permission would be obtained before their de-identified records were used. Of the study population, 59% reported already being aware of EHRs before the survey. Older respondents and individuals with complex patterns of interaction with healthcare services were more likely to report prior awareness of EHRs. Individuals self-identifying as belonging to ethnic groups other than White British, and those with lower educational qualifications were less likely to report being aware of EHRs than White British respondents and respondents with degree-level education, respectively. Those who reported being aware of EHRs were less likely to say they expected explicit consent to be sought before use of their de-identified record. CONCLUSIONS: A large number of patients remain unaware of EHRs, while preference for implicit consent is stronger among those who report previous awareness. Differences in awareness levels and consent expectations between groups with different socio-demographic characteristics suggest that public education and information campaigns should target specific groups to increase public awareness and ensure meaningful informed consent mechanisms. SN - 1872-8243 UR - https://www.unboundmedicine.com/medline/citation/25649841/Patient_and_public_attitudes_towards_informed_consent_models_and_levels_of_awareness_of_Electronic_Health_Records_in_the_UK_ L2 - https://linkinghub.elsevier.com/retrieve/pii/S1386-5056(15)00011-8 DB - PRIME DP - Unbound Medicine ER -