The Resourceful Patient

3.9 Resources - Patient Owned Web Record (POWR)

'I've got breast cancer and ovarian cancer. I've got records in Morecambe Royal Infirmary, the Christie Hospital, the Whittington Hospital and in my general practitioner's surgery. My GP's very good but my records have been mislaid for the last three and a half months. I don't see how it's possible for me to have good care.'

A 72-year-old patient

Healthcare is becoming more:

  • complex
  • specialised
  • bureaucratic

As a consequence, the size of the patient record increases inexorably. Paper records are only effective if the patient is getting all his care in one setting. The simplest solution to this problem is to make the patient the record holder.

3.9.1 Patient-held records

Patient-held records have been shown to be effective in certain relatively simple situations, for example maternity records or child health records. However, the time has now come to create a ubiquitous single record by putting the record of an individual patient on the World Wide Web. Health Level 7 (HL7) standards, an internationally agreed protocol, allow every healthcare organisation to communicate with the Patient Owned Web Record - all that is needed is a commitment to co-operate.

3.9.2 Web-held records

Many companies now offer templates for Web-held records. The technology is simple, but the main concern is security. Encryption allows high levels of security, but any level of security can be cracked by the skilled and determined hacker. However, routinely hacking into people's medical files would not be particularly attractive for the skilled hacker because most medical records are dull. Hackers might be interested in certain types of medical records, for example an access to the medical record of the Prime Minister or in finding out who was infected with HIV, but in estimating the risk of these events it is essential to bear in mind that our current record systems cannot be assumed to be particularly safe. In many hospitals, it is still possible simply to phone a ward and be given information about a person's state of health without a security check.

3.9.3 Ownership

Nobody owns the World Wide Web, but who would own a patient's record on the Web? At present the principle is that the provider of care owns the paper record, but the most effective way of managing a Web record is for the patient to own it. Again fears have been raised about this principle. One of the fears that has been expressed about the Web record is that the patient might tamper with the record to create a case for litigation.

3.9.4 Web records are inevitable

In the UK, the government's Information for Health strategy gave a commitment to provide electronic patient records for people receiving care and an electronic health record that would be linked to an individual for life. Change has started, and by 2010 Web records will be ubiquitous. The patient who wants good care should campaign for a Web record as soon as possible.

3.9.5 PING (Personal Internetworked Notary and Guardian Project)

The PING (Personal Internetworked Notary and Guardian Project) at the Boston Children's Hospital has come closest to realising this vision and the aim is to create a patient-owned record with six characteristics:

  • comprehensiveness
  • accessibility from work, home and on holiday, as well as the clinic
  • inter-operability with every healthcare organisation
  • confidentiality
  • accountability - changes to the record should be recorded and visible to the patient
  • flexibility, to allow the patient to contribute to research or education

The PING research team identified two problems and offered them solutions to them (Table 9).

Table 9: Problems and Solutions
Problem Solution

Health care organisations work in isolation
Record systems should be designed so that they can show all the data using public standards
Patients are increasingly anxious about privacy Patients should have the control over access to their records

Mandl, Szolovits et al, BMJ (23)

The electronic medical record should be:

  • comprehensive and cover all aspects of health
  • accessible everywhere
  • interoperable with all healthcare systems
  • confidential and private
  • open to the patient's scrutiny

The key issue is confidentiality, but the present system of patient records is by no means secure, and even though many people will move money on the Internet, fears of the misuse of medical information are more deeply-rooted. Perhaps the best approach would be to make the electronic record a right in the first instance so that those patients who believed their care could be safer and better by the use of electronic medical records need not have their rights impaired by those patients who understandably fear the Internet.