Select Committee on Science and Technology Written Evidence

Memorandum by Dr Philip P Mortimer, Director Sexually Transmitted and Blood Borne Viruses Laboratory and Public Health Laboratory Service

  I have worked in medical virology for over 25 years, with a continuing interest in related specialities and my recommendation to the Committee would be close to that voiced by Julius Weinberg at the start of the Seminar (report of seminar will be published in an Appendix to the Report). I believe continuing infectious disease surveillance to be essential and that future surveillance must be for a clear purpose—to anticipate, prevent and where necessary intervene in outbreaks, whether medical or veterinary. The cost in human and economic terms of chronic epidemics like HIV and BSE and acute ones like FMD and influenza has become so high that the UK must now improve its contingency planning and responsiveness.

  To my mind we have repeatedly failed to use existing specialist knowledge and experience in these situations, and recent outbreaks have also shown that not enough is done at any early stage to ascertain cases and stamp out outbreaks. Generally, the clinical, laboratory and epidemiological skills are available, but these must be mobilised more effectively.

  A major issue that members of your committee might therefore care to examine is how lines of communication and management can be made to work better in the future, bearing in mind that micro-organisms do not recognise administrative boundaries and that human and animal epidemics have much in common (including sometimes the same pathogens). Key to this is modelling responses to anticipatory exercises, as exemplified by the PHLS Influenza plan (enclosed). I suggest your committee might care to promote the wider use of this approach.

  May I add a personal note to the evidence you have already had submitted from PHLS? It stems from my role as the PHLS "Caldicott Guardian". This role originates in the Caldicott Report (1997) on patient confidentiality and for infectious diseases includes ensuring that patient data processed for surveillance purposes are used in conformity with the Data Protection Act (1988). Additionally, in late 2001, the Secretary of State set up a Patient Information Advisory Group (PIAG) with widely drawn membership, to advise him on the uses to which personal patient data should be put. The PHLS successfully argued its case for the public health use of patient data to this group earlier this year (see enclosure). However, PHLS procedures will be reviewed by PIAG each year, there being a body of opinion both among the general public and some health professionals (reflected in General Medical Council guidance to doctors), that information on individual cases should only be shared for purposes of infectious disease surveillance with explicit patient consent. The PHLS position is that this would be quite impracticable.

  The PHLS is currently drafting leaflets for patients for health care professionals explaining the need for public health access to those data under medically confidentiality, and I expect that the Health Protection Agency will take up that initiative by printing and disseminating these leaflets after next April. The leaflets will inform patients that, except for statutory notifications, they may opt out of having their data used for infectious disease surveillance.

  The foregoing is one of two threats to surveillance that I would like to draw to your committee's attention. The other threat relates to interactions between new management structures in the Health Service in the sharing and collation of infectious diseases data. Historically, infectious diseases surveillance in England and Wales has been based on two data streams, laboratory reports and clinical reports. Both have fed into the Communicable Diseases Surveillance Centre (CDSC) and the reporting has been customary but not compulsory. Laboratories and clinicians have been incentivised by, on the one hand, the wish of most diagnostic laboratories (not just the 44 in the PHLS network) to demonstrate their commitment to public health microbiology; and, on the other hand, clinicians' wish to record total numbers of cases, for example, to maximise local funding of HIV and TB care, the funding being based on caseloads. The combined result has been a relatively stable database from which to analyse trends over time in national incidence and prevalence of infection. In the case of laboratory based diagnoses, reporting has also provided opportunities for reference and academic laboratories to study circulating strains of micro-organisms.

  These surveillance arrangements, which date back at least 40 years and have been regularly expanded and refined, go well beyond the original system of statutory notification of infectious disease. The new Health Protection Agency will, in my opinion, do well to act to protect these data flows as soon as it can, and were you and your colleagues to recommend this, it would no doubt strengthen the hand of the Agency.

  With the imminent disappearance of the PHLS there are now reasons why longstanding infectious disease reporting arrangements are at special risk. The first is that in future only the 10 diagnostic laboratories managed by HPA may choose to report nationally data of public health significance. Reporting involves extra time and expense and most diagnostic laboratories operate under very heavy clinical pressures. The second is that both laboratory and clinical data gathering might in future be interpreted as a regional, strategic health authority, or even Primary Care Trust responsibility rather than a national one, and therefore wider data sharing might end. There are already worrying signs that data sharing may no longer be a seamless process yielding aggregate national data.

  Because of (a) patient confidentiality and (b) the new management structures in the Health Service, therefore, the future reliability and accuracy of surveillance data in England is at risk. Information on, for example, prevalent cases of HIV infection, the residual incidence of vaccine preventable illnesses such as measles and rubella, and laboratory data on nationally dispersed cases that would constitute an outbreak of a food borne disease could all be lost, to the detriment of public health and of good policy formulation.

  In September you kindly invited me to offer evidence at the meeting at the Royal Society organised by your committee. My particular contribution would be to suggest that the new Health Protection Agency should be enabled to incentivise laboratories and clinicians to maintain current direct national reporting of infectious disease. In the absence of clear guidance and lines of management this might have to involve payment or other reward for information shared.

Dr Philip P Mortimer

Director, Sexually Transmitted and Blood Borne Virus Laboratory

previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2003