SUMMARY

  1.  The introduction of the electronic method of recording medical information has been one of the great successes for primary care in the United Kingdom in the last decade. The new technology has made it possible to hold information in a manner that was previously unimaginable, permitting detailed analysis of patterns of health and the effectiveness of treatment.

  2.  In the hands of trained medical practitioners, working with clinical systems and file servers based securely in their own premises, the advantages for improvements in health care have been immense, yet the fundamental trusting relationship between patient and doctor has been maintained.

  3.  Who may view the data, is presently clearly understood by patients. They believe that information given in confidence will remain under the stewardship of their physician and only imparted to other persons as and when necessary. The lines of accountability are also short and well defined.

  4.  The extensive use of clinical codes to record items of data, which would have formerly been written to paper, presently allows academic enquiries and searches of anonymised information, which is perfectly adequate for most lines of research. Search engines for these purposes are already being used regularly in primary care under the supervision of the medical practitioners who are responsible for the security of the patient data.

  5.  For some patients, there may be advantages if some of their clinical information is held at a remote site and accessible to other clinicians. For the majority there are no specific reasons why this should be assumed to be necessary. Alternative methods, by which data may be made available with explicit consent, already exist and have been disregarded, in the pursuit of a centralised and all-encompassing database.

  6.  If the National Data Spine becomes available to patients, the emphasis should to encourage those with the greatest need to share clinical data to opt-in, rather than enter into a vexing period of debate as to whether patients should be permitted to opt-out.

INTRODUCTION

  7.  I am a general medical practitioner and clinical data user. I have been in the forefront of the transition from paper records to electronic format over a period of 15 years. The practice in which I work has been one of the first to recognise the potential for electronic record to revolutionise and streamline health care. Initially the technology was not suited to mass storage of vast amounts of information and was therefore mainly used to perform repetitive functions such as repeat prescription issuing. As advances in electronic hardware has permitted greater volumes of information and scanned images to be held for rapid retrieval, we have moved to the point where many practices in the UK have become either paper-light or even paper free. Throughout this period of transition we have become increasingly aware of the issues of ownership of patient data. Many patients view their data as being their own, despite the protestations of successive Secretaries of State, either in print at the foot of our old Lloyd-George record cards, or through a tacit assumption that provision of electronic hardware confers intellectual property rights to the data held therein. This paradox is at the heart of the present anxiety about the right to withhold personal data from the State, which is not viewed in all quarters as entirely benign in its intentions, at all times. I have worked for 30 years in primary care and for more than 10 years as a director of out-of-hours services in my locality. I have led on clinical governance issues and data protection on behalf of my Primary Care Trust.

RELEVANT INFORMATION

  8.  The reasons for a high level of computerisation of records in general practice have not just been due to technical advances. Leadership from within the profession at the highest level and political support for primary care, have combined to build an appropriate regulatory framework and financial incentives, particularly the present Quality & Outcomes Framework, have encouraged GPs to use computers extensively.

  9.  It is the responsibilities of those engaged in the conduct of research and particularly those involved in undertaking ethical review, to decide that the public interest in conducting the research substantially outweighs the public interest in privacy. This sits most comfortably with those most closely associated with the data subjects.

  10.  Only a small percentage of patients actually need large amounts of complex information to be made available to other health professionals at all times. Even in emergency situations, it is rarely impossible to make a diagnosis or institute treatment without reference to primary care medical records.

  11.  Medical records in summary or detail can presently be provided by GPs within 48 hours or shorter periods of time, upon appropriate and verifiable requests from other clinicians. These are generally transmitted by facsimile, which is virtually "un-hackable". Increasingly electronic data will be able to pass directly between clinical systems upon request.

  12.  A distributed database, with file servers in each practice, is less vulnerable to massive data loss through equipment failure or power outages and malicious interceptions than area-wide or National databases.

  13.  Alternative web-based solutions, permitting patients to lodge clinical biometric data or clinical summaries, already exist. The patient may access this data much in the same manner as a personal bank account.

  14.  Electronic memory has become very affordable in recent years, permitting an entire medical record to be fully transportable in other devices such as mobile telephones, personal data assistants, memory sticks and credit-style cards. Such arrangements encourage personal responsibility for health and should not be underestimated.

  15.  The National Data Spine is overly complex and unwieldy for the intended purpose. Considerable savings will accrue from limiting the scope and remit of the service, even at this late stage of development.

RECOMMENDATIONS FOR ACTION

  16.  The Select Committee should recommend the Government cease its pursuit of hegemony over the entire medical record of each of its citizens, since this is in direct contravention of Article 12. Universal Declaration of Human Rights that no one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, or to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks.

  17.  The National Data Spine has merit in that specific medical data may be placed there with explicit consent, in order that is may be shared with other clinicians. This should be a service that is offered to patients and not a compulsion.

  18.  Access to services such as Choose and Book, for arranging hospital appointments should not be dependent on uploading of entire medical records to the National Data Spine.

  19.  Alternative arrangements for the self-management of personal medical and biometric data by patients should be encouraged, through the use of secure, independent web-based solutions and portable data storage devices.

Dr Peter Smith

19 February 2007