Evidence submitted by the Health Protection
Agency (EPR 31)
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
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.
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,
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
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.
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