Dr Cecilia Pyper, Dr Justin Amery (left), Dr Marion Watson and Clair Crook describe a pilot study giving patients secure, private access to their online medical record


   

When a patient comes to see a health professional for advice, the professional pulls together information from a number of different information sources, including:

  • The patient: From the history as related by the patient, from the patient's own knowledge, and understanding, from the clinical examination and from other less tangible sources such as the patient's body language.
  • The health professional: From training and experience, and from personal beliefs and expectations.
  • Other relevant people: For example, other health professionals, friends and relatives of the patient.
  • External sources: For example, the patient's record, books, the internet etc.

There are two key reasons why the role of health professionals is changing. Health professionals are finding it increasingly difficult to assimilate all the relevant information that is available, and health information is now readily available to patients and professionals alike.

As a consequence, medical professionals see themselves less as the sources of information, and more as 'brokers' of information.

In this process of information 'brokering', the health record plays a key role as:

  • A source of useful information
  • A place to record new information
  • A forum to facilitate information exchange.

This last role is only feasible if the record is equally available to patients and professionals.

Information can be considered to be a form of currency, which empowers those who have it, and which can be exchanged, given and shared.

Background to the project

At Bury Knowle Health Centre we felt that the way to maximise the potential of patients' health records was to make them available online.

We believed that this would make the record more accessible both to patients and to all of the various health professionals involved in the patients' care.

We also felt that putting the health record online could enable high quality and personalised information to be incorporated from the internet directly into the health record, where the information could be used fruitfully by patients and professionals.

There are, of course, significant cultural, ethical and technological barriers to any such project, but we had the advantage of having travelled some way down this road already.

We are a paperless practice and have been keeping records entirely electronically for more than 5 years; as a result the patients' in-practice electronic records are well populated with information.

We have been carrying out a study of patient-held records since 1997, so the patients and members of our primary healthcare team had already overcome the cultural barriers to patients accessing their records.

More recently we were invited by the NHS Information Authority's Electronic Record Development and Implementation Programme (ERDIP) to carry out a feasibility project to investigate patient access to their online primary healthcare record.

EMIS, our commercial GP record system suppliers, were kind enough to develop a patient browser programme which gave patients a secure read-only view of their own electronic record.

The project

In January 2001, facilities for patient access were set up at the practice: computers that were linked to the practice system via a local area network were provided in private booths.

The computers were fitted with biometric fingerprint recognition systems and screen touch light pens for patients who were unfamiliar with the use of computers.

Using these PCs, patients were able to see a browser-based read-only view of their complete EMIS record. The time/cost constraints of the project prevented us from offering patients access to the health professionals' correspondence (which is stored on a separate document scanning and storage system).

As the ERDIP programme will not sanction full internet access until issues concerning the security and confidentiality of the internet have been fully addressed, our patients were able to gain remote access using the NHS 'Open Exeter System' (a database usually used by health authorities for storing and accessing patient registration data via the NHSnet).

The Open Exeter System provided us with an NHSnet server to which the patients in the study were given authorised and secure access (using their NHS number for identification, and a patient-generated password and biometrics for authentication). This detail was of very little significance for the project, as there is obviously little conceptual or technological difference between remote access via NHSnet and remote access via the internet.

Information was obtained from written questionnaires and from focus groups with:

  • Patients who had previously held their records in paper format
  • Patients who had seen their electronic record
  • Patients who did not want to see their record.

The patient postal questionnaire survey was developed and sent to just under 14% of the Bury Knowle practice adult population (n=1075), stratified for age and gender. The issues and attitudes explored in the survey are shown in Table 1 (below).

Table 1: Issues and attitudes explored in the patient questionnaire survey
  • Views on seeing health records
  • Issues regarding electronic records
  • Views on access to other electronic health information
  • Views on seeing dependants' records
  • Potential effects on consultation
  • Current use of and access to computers

We were constrained by the ERDIP time frame imposed on us; also, we were unable to send out postal reminders because of a 2-week postal strike in Oxford.

A total of 329 patients returned the questionnaire, and 51 patients subsequently attended the practice to view their electronic record.

The system was demonstrated by one of the research team, and a detailed log was completed for each patient, which included: first impressions; time taken; any problems; views on each section of their record including errors or omissions; whether any of the record was printed out; and any general views, including whether seeing their record had altered their views. A GP was on hand at all times to answer any medical queries.

Preliminary findings

As this study is not yet complete, we are unable to give the full results in this article. However, initial findings are available (see Table 2, below). These provide insights into the acceptability of the online, patient-accessed, health record to patients and professionals and its effect on the information-partnership between patient and professional.

Table 2: Initial findings of the study
General findings:
  • Most patients found that seeing their record was useful
  • A few were scared or worried by the idea of seeing their record
  • Most patients regard records as belonging to doctors not patients
  • Most patients were aware that they had the right to see their record, although few had ever done so
  • Patients were concerned about unauthorised access and use of their health record, especially by insurance companies, pharmaceutical companies, employers, the Government and hackers
  • Patients were particularly concerned about security with respect to access from outside the practice, especially the goal of remote access worldwide via the internet.
  • Many patients wanted control over who could see their records, varying from anyone can see them, through certain groups of clinicians only, to specific named clinicians only
Patients reported that they:
  • Were more able to ask questions of the doctors
  • Felt better informed
  • Felt that the doctors were better informed about their concerns and health conditions
  • Felt less anxious about what was written in their record
  • Were empowered to take charge of their own health
  • Felt that the consultations were more comfortable
  • Felt that there was a change in the consultations in that there was 'less secrecy' and they personally had 'more control'
  • Were enabled to correct or challenge personal health information recorded in the practice
  • Were able to correct errors (39% found errors in their summary sheet)
Health professionals and patients reported that:
  • There was greater sharing of information during a consultation
  • Communication and sharing of responsibility for continuity of care improved
  • New results or information reaching patient-held records needs to be managed carefully
  • If results are abnormal or there is 'bad news' in a letter from the hospital, patients should have the opportunity to be given the information from a health professional
Health professionals reported that:
  • They were less worried than they thought they would be about patients seeing the information in their records

Further needs

This programme of work was severely limited with respect to the time and resources available, and the sample was biased towards the elderly. However, we were interested to find that it was the elderly rather than young middle-class patients who were most involved with the project.

The time scale of the pilot only permitted a single visit. It did not allow us time to follow up subsequent reasons for accessing their records or additional health information, or to address the key issues of effects on consultations and on patient–practitioner relationships.

An in-depth study of the practical issues, views and concerns of patients is clearly needed, to verify and add to those described in this report.

Nevertheless, the study does allow us to draw some initial and tentative conclusions:

  • It is technologically possible to give patients access to their records online (although scaling this small project up to regional or national level would take significant investment).
  • Contrary to our preconceptions, even previously inexperienced patients seem to be able to use the associated technology quite happily (despite our study population being biased towards the elderly).
  • Even though the idea of patient access may be new to many patients, most quickly assume responsibility for and ownership of their records.
  • Security and confidentiality of records are very important to patients and must be a major concern for further development of the online health record.

Initial findings of this limited study suggest that the online, patient-accessed health record does facilitate exchange and sharing of information, thereby strengthening the patient-professional partnership.

Within the constraints of this study, only information currently documented in the record was available to patients and professionals. As previously suggested, this information could be augmented considerably if other online sources of information were to be included within the online health record.

With NHS Direct, the National electronic Library for Health, and countless other sources of high quality health information now readily available online, the prospects of developing the patient-accessed online health record into an indispensable forum for exchange and sharing of information, and for strengthening the patient–professional partnership appear very close indeed.

Guidelines in Practice, July 2001, Volume 4(7)
© 2001 MGP Ltd
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