Patients' experiences when accessing their on-line electronic patient records in primary care.

BACKGROUND: Patient access to on-line primary care electronic patient records is being developed nationally. Knowledge of what happens when patients access their electronic records is poor. AIM: To enable 100 patients to access their electronic records for the first time to elicit patients' views and to understand their requirements. DESIGN OF STUDY: In-depth interviews using semi-structured questionnaires as patients accessed their electronic records, plus a series of focus groups. SETTING: Secure facilities for patients to view their primary care records privately. METHOD: One hundred patients from a randomised group viewed their on-line electronic records for the first time. The questionnaire and focus groups addressed patients' views on the following topics: ease of use; confidentiality and security; consent to access; accuracy; printing records; expectations regarding content; exploitation of electronic records; receiving new information and bad news. RESULTS: Most patients found the computer technology used acceptable. The majority found viewing their record useful and understood most of the content, although medical terms and abbreviations required explanation. Patients were concerned about security and confidentiality, including potential exploitation of records. They wanted the facility to give informed consent regarding access and use of data. Many found errors, although most were not medically significant. Many expected more detail and more information. Patients wanted to add personal information. CONCLUSION: Patients have strong views on what they find acceptable regarding access to electronic records. Working in partnership with patients to develop systems is essential to their success. Further work is required to address legal and ethical issues of electronic records and to evaluate their impact on patients, health professionals and service provision.

Patients' access to their online electronic health records.

We surveyed a randomized group of 1050 adult patients stratified for age and sex, from a general practice in Oxfordshire, to find out their attitudes to electronic health records (EHRs). Eighty-six per cent thought that patients should have the right to see their records. While 72% knew that they had the right to see their records, only 4% had done so. Private EHR viewing booths with a computer and fingerprint identification system were installed in the primary care centre. Patients were randomly selected from those who responded to the questionnaire and wished to view their EHR. Of the 100 patients who saw their online EHR, 99 found the session useful and 84 found their records easy to understand. Three focus groups were held with 14 patients who said that they did not want to access their EHRs. The reasons patients gave during the focus groups included that they trusted their general practitioner and thought it would imply a lack of confidence. After the focus groups, 11 patients changed their minds and accessed their records. We believe that patient-accessed EHRs will offer substantial benefits to patients, health professionals and the National Health Service as a whole.

Access to electronic health records in primary care-a survey of patients' views.

BACKGROUND: The NHS is moving towards electronic access to health records for patients from 2004 and needs to involve patients in the development process. The aim of the study was to explore the views of a large sample of patients about online access to EPRs and health information in primary care. Areas covered included: accuracy rights of access; security; confidentiality and smart cards. MATERIAL/METHODS: The questionnaire was sent to 1050 patients selected at random from the practice list after stratification for age and sex. RESULTS: 66% of patients aged over 20 years old responded. Patients know they have the right to see their records although few have done so. Overall they feel the advantages of electronic health records outweigh the disadvantages. They have concerns about security, confidentiality, understanding their records, their accuracy and completeness. The patients recognised the potential benefits to their healthcare and relationships with health professionals. There was a majority view that parents / guardians and carers should have access to their dependants' records. CONCLUSIONS: Patients need to be confident that access is limited to those who have the right to see the records. The majority were confident they would understand their records and about half were familiar with computer use. However these are major issues for older patients who will require assistance in order to benefit from accessing their EPRs. It is essential that patient involvement takes place at every stage of the development of EPRs and that their views are taken into account.