EXECUTIVE SUMMARY

  1.  The Health Protection Agency (HPA) is submitting evidence to the House of Commons Health Committee with regard to the area of interest "How data held on the new systems can and should be used for purposes other than the delivery of care eg clinical research".

  2.  The HPA believes that Connecting for Health offers a vision for healthcare information which could revolutionise the collection and use of data for public health purposes and enable the HPA to provide a quicker and more responsive service.

INTRODUCTION

  3.  The HPA is an independent body that protects the health and well-being of the population. The Agency plays a critical role in protecting people from infectious diseases and in preventing harm when hazards involving chemicals, poisons or radiation occur. We also prepare for new and emerging threats, such as a bio-terrorist attack or virulent new strain of disease.

CURRENT SYSTEMS

  4.  The Health Protection Agency undertakes surveillance of infectious diseases and other environmental threats to health through a range of local, regional and national surveillance systems. The purpose of these surveillance systems includes acute alerting and response to health protection threats, the longer term monitoring of trends and distribution in disease, hazards and exposures, and elucidation of the determinants of disease epidemiology and the natural history of diseases due to infections and other environmental threats to health. A key requirement of health protection surveillance systems, and one that is almost unique amongst disease surveillance systems, is the need for real time or near real time, capture and analysis of data in order to detect and inform the response to outbreaks and other emerging infectious disease problems.

  5.  The Health Protection Agency draws on data from a wide variety of sources within the NHS, and beyond, as well as using data derived from its own frontline units and laboratories. Among the many data sources and systems used to monitor the wide range of infectious disease and other environmental threats to health there are a number of core systems that underpin much of the Health Protection Agency's surveillance activity, these include:

—    Voluntary confidential reports from microbiology laboratories (and some other pathology departments).

—    Notifications of infectious disease made under the provisions of the 1984 Public Health Act and 1988 Public Health Regulations.

—    Pseudonymised clinical reports of HIV/AIDS.

—    Data from Primary Care reporting networks including the Royal College of General Practitioners network and the QRESEARCH and QFLU networks.

—    Outpatient return data, in particular from genitourinary medicine clinics (KC60).

—    Vaccination uptake information, derived from child health and other relevant information systems.

—    Data on hospital patients including case reports of surgical site infections and other healthcare associated infections, and hospital episode statistics.

—    Mortality data from the Office for National Statistics.

  6.  The amount of person identifying data, demographic information, and other information relating to clinical status or risk factors varies between these surveillance systems, but, as noted above, the common feature of many of these surveillance flows is that the data are collated and analysed on as near a real time basis as is possible. Many of the surveillance systems are based on voluntary reporting by clinicians and pathologists (notifications are unusual in that reporting is mandated in law) and for some data flows, in particular laboratory reports that constitute the mainstay of surveillance for many conditions, data flows are supported by ad hoc electronic reporting systems that could be compromised by the implementation of National Programme for IT Systems unless those systems are explicitly specified to deliver the required data. A project is currently in progress to provide this specification.

VISION

  7.  There is the potential for Connecting for Health to deliver a nationwide system that moves the necessary data (disease, microbiology etc) from all parts of the NHS to the Expert Surveillance Centres in real time and that can also support longitudinal monitoring of individuals to enable surveillance of the long term effects of infectious disease and other environmental threats to health. It will be important that the process of implementation of this system does not disrupt or compromise existing systems, and that the fully implemented system inter-operates with complementary, cost effective and validated schemes.

  8.  The benefits that Connecting for Health could realise for organisations such as the HPA cannot be overstated. In an emergency such as an Influenza pandemic, the automation of key information flows would ensure the Agency is kept up to date and is able to respond at a time when key staff would be taken ill and unable to support existing processes. The vision offered by Connecting for Health will enable better protection of health in England in a more cost-effective way.

James Freed and Mike Catchpole

Health Protection Agency

15 March 2007