Key findings from survey on patient views towards EHRs

As part of our Electronic Health Records (EHRs) project we carried out a large scale cross-sectional survey recruiting 5331 patients and members of the public from 16 primary and secondary care sites in West London (2011). In light of recent policy developments with the care.data GP extraction service we provide here a summary of key findings while preparing publications in peer-reviewed journals (we have already published the study protocol and some high level results):

Access preferences for different user groups

Patient and public preferences for access to EHRs by different user groups varied depending on whether records would include personal identifiers. Significantly high proportions of people suggested that doctors and nurses (91.4%), as well as ambulance and emergency staff (72.3%), should have access to detailed health information in EHRs. A striking majority responded that patients should have full access to their own medical records (94.3%). Around half of participants thought that user groups in research (NHS researchers, health charities and drug companies) and planning or policy (NHS managers and health policy makers) should only be allowed access to complete EHRs after personal identifiers have been removed. There was, however, some opposition against specific user groups having any access to EHRs, such as pharmaceutical companies (43.6%) and general practice (GP) receptionists (37.4%).

Access preferences

 

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Figure 1. Respondents’ access preferences for 12 different user groups across the three categories of the outcome variables (N = 2649). For healthcare user groups the options provided are: access to complete medical history, to limited health information or no access at all.  For research and policy/planning user groups the options provided are: access to complete medical history with identifiers (name and address), without identifiers or no access at all.

 

Perceived security risks and concerns

Overall, 78.9% of respondents voiced concerns about the security of EHRs and 71.3% thought that the NHS would not be able to guarantee the safety of health information. In addition, 46.9% of respondents felt that EHRs would be less secure in comparison to the way their health record was held at the time the survey was completed.

Perceived security concerns

Figure 2. Proportion of respondents reporting that they would be worried about security if their record were part of an EHR system, N = 2761.

 

Trust in the NHS to make EHRs secure

Figure 3. Proportion of participants reporting that they trust in the NHS to make EHRs secure, N = 2761.

 

EHR security compared

Figure 4. Respondent views about EHR security compared with security of their records as held at the time of the survey, N = 2761.

 

Consent and awareness levels

The majority of respondents (91%) expected to be explicitly asked for consent for their identifiable records to be accessed for health provision, research or planning. Half of the respondents (49%) did not expect to be asked for consent before their de-identified records were accessed.

 

Consent

 

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Figure 5. Patients expecting to be asked for explicit consent before access to their identifiable and de-identified EHRs (N = 3157).

 

In terms of awareness levels, 59% of the study population reported already having heard of EHRs before the survey, with the media and the NHS being the most frequently cited sources of information. 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.

 

EHR awareness

 

Figure 6. Patient and public levels of awareness of EHRs: proportions of people who had heard about EHRs and those who reported not being aware of the concept (N = 3157).

 

Summary

High levels of patient and public concerns about the security of integrated EHRs in the UK highlight a need for more intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing. 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. Further information on our findings will be included in peer-reviewed academic publications.

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