Introduction

Information is essential to effective healthcare. Patients need to know that the health professionals caring for them are taking decisions based on accurate information about them as individuals and about the available treatments for their health problems. Over the past few years, the National Health Service (NHS) has put considerable effort into improving the management of information. The establishment of the National Institute for Clinical Excellence has furthered the drive to ensure that care is based on sound scientific evidence about effectiveness. Monitoring of mishaps and learning the lessons has been systematised, both in local NHS organisations and through the National Patient Safety Agency, so that patients can be better protected from human error. The National Programme for Information Technology for the NHS is now seeking to improve the way in which personal information is managed and protected.

The vision is for a single system of personal health records that can be accessed electronically from NHS facilities anywhere in the country when needed for patient care. Wasted appointments because the records are not available should become a thing of the past. The frustrations of having to tell health professionals the same things many times over will be dissipated. These are significant issues. One survey of patient experience across five countries found that patients in the UK were significantly more likely to find that their results or records were not available to doctors in time for their appointments than their counterparts in Australia and New Zealand. Twenty-three percent of those surveyed had encountered this problem in the UK. Almost half of the patients in the survey (49%) had to tell the same story to multiple health professionals (Blendon et al, 2003; see also Health Which? and NHS National Programme for Information Technology, 2003, pp 7-8). One of the results of the new system should be improvement in these areas, with benefits for the quality of care. Patients will also be able to check information to ensure that it is accurate. They will be able to exercise some control over who gets to see which parts of their records and be far better able to check that records are used in the way that they wish.