Memorandum submitted by the Welsh Combined
Centres for Public Health (WCCPH).
Thank you for your request for a written submission
from the Welsh Combined Centres for Public Health (WCCPH). In
particular, we wish to comment on the proposals for the Wales
Centre for Health.
We very much welcome the proposal as it represents
a significant step forward in public health in Wales. The experience
of the Welsh Combined Centres for Public Health is encouraging
for the prospects of the Wales Centre for Health, in that we have
proved that there is enthusiasm and commitment for all-Wales,
cross-sectoral collaboration for public health.
The Welsh Combined Centres for Public Health
was set up in 1993 by the College of Medicine after discussions
and funding by the Welsh Office. The goal of the WCCPH has been
to foster multidisciplinary collaboration to support the Public
Health function through teaching, training and research. From
the beginning it was designed to create a bridge between academic
institutions in Wales, the NHS and local authorities, and it received
wide support from all sectors at its inception. Notable achievements
Contribution to the development of
centres of multidisciplinary public health expertise in Swansea
(West Wales Centre for Public Health, in collaboration with Swansea
University and Health Authorities and Local Authorities in West
Wales) and in North Wales (a collaboration between North Wales
Health Authority and Bangor University).
Development of the highly rated multidisciplinary
Masters in Public Health programme.
Development of the all Wales Public
Health Training Programme funded by the Welsh Assembly.
Appointment of Professor Ronan Lyons
to the Chair of Public Health Medicine funded by Morgannwg Health
Authority and the College of Medicine.
Development of the All Wales Injury
Surveillance System and CAPIC, the Collaboration for Accident
Prevention and Injury Control.
Independent research on health around
the Nantygwyddon and Trecatti landfill sites.
The WCCPH was one of the founding
organisations of the Welsh Collaboration for Health and Environment.
Establishment of the Government funded
National (UK) Focus for Chemical Incidents (to be incorporated
into the new Health Protection Agency) and the WHO Collaborating
Centre for Chemical Hazards, based at University of Wales Institute,
We see the Wales Centre for Health, if properly
configured, to be another major step in developing public health
in Wales. Once the functions of the Centre are agreed we will
be more than happy to review and revise the workplan of the Wales
Centre for Health to support the Centre.
We have three concerns, however, which we would
draw to the attention of the Wales Office.
(i) The first concern has to do with the
public's perception of the independence of the Wales Centre. The
1998 Consultation Document "Better Health, Better Wales"
and the recent Welsh Assembly's review of Public Health in Wales,
led by the Chief Medical Officer, have identified a clear need
for an all-Wales agency to provide an independent and authoritative,
evidence-based overview of health and health determinants in the
Welsh population. The Welsh Combined Centres for Public Health
has been involved with landfill health controversies in Wales.
In these cases we have had to deal with the public's wariness
of official statements and re-assurances, whether from the Local
Authority or Welsh Office. Interestingly, the university base
is seen by the public to have an independence that is valued.
The proposal for a Wales Centre for Health explicitly states that
the Centre will be "an independent training, advisory and
research body" and this is very much welcomed. However, careful
consideration need to be given to how the public will be assured
of independence and openness of the work of the Centre. The current
wording of the Draft Bill does not appear to include any safeguards
which might be given by the Assembly to ensure that decisions
about the functions, outputs and the target audience for information
and advice are driven by public health priorities and not political
(ii) The second concern we have is that
an organisation which has an independent training and research
role needs to have academic credibility. It will be essential
to have formal links between the Centre and the Universities in
Wales in order to provide the academic underpinning of the Centre.
(iii) The third concern we have has to do
with the issue of whether the Wales Centre will be able to have
the information it will need to answer the questions the public
will want answered. Society is becoming more informed and intolerant
of externally imposed risk. Recent experiences in Wales in relation
to the potential for health effects of pollution emanating from
landfills or incinerators have highlighted the intense public
interest in these issues. As people become wealthier and more
informed the level of interest can only increase. Communities
and politicians will expect the Welsh Assembly Government to be
able to respond to concerns and tell people whether their health
is being affected by adjacent industries. The Wales Centre for
Health (WCH) could fulfil this and other health surveillance obligations.
Unfortunately, recent data protection regulations and guidance
introduced by the UK government and General Medical Council mean
that the WCH may not have access to the data necessary to be able
to answer the legitimate concerns of communities and the Welsh
Following concerns raised by the medical profession
about data confidentiality in the electronic era the UK government
has responded by preventing the transfer of identifiable or potentially
identifiable health data to bodies or individuals not involved
in the care of the patient for the specific reason the patient
contacted the health service. In 1996 the Department of Health
issued the protection and use of patient information (www.doh.gov.uk/ipu/condiden/protect/pguide.htm),
which recommended that the NHS make patients aware that while
confidentiality is protected, patient information is transferred
around the NHS for several important functions. The 1998 Data
Protection Act stated the need for consent for identifiable data
to be transferred, but in Schedule 3, the Act permits an exemption
for the purposes of preventive medicine.
Following the Human Rights Act, there was much
debate about the issue and a suggestion that the common law duty
of confidence meant that patient data would not be transferred
to third parties without consent. The General Medical Council
issued guidance that identifiable patient data could not be entered
onto disease registers without consent (General Medical Council.
Confidentialityprotecting and providing information. London:GMC
2000). The UK government responded with a clause in the Health
and Social Care Act.
The transfer of identifiable data is legal where
express consent is given by the patient or where legislation permits
data transfer for specific purposes (eg notification of infectious
diseases under the Public Health Act) or where the Patient Information
Advisory Group (PIAG) set up under section 60 of the Health and
Social Care Act allows the transfer of such data as a temporary
measure until mechanisms for obtaining explicit patient consent
Interpretation of these Acts and guidance varies
enormously and there is considerable confusion. Consequently,
several hospitals in Wales have stopped sending data to databases
that are crucial for health surveillance.
The central issue is that it is not possible
to obtain explicit patient consent for the use of identifiable/potentially
identifiable data for public health surveillance. There are a
variety of reasons for this, including patient inability to give
consent (due to dementia, alcohol or drug impairment, distraction
due to pain, or denial of diagnosis), or opposition to health
surveillance where people cannot conceptualise how aggregated
data (using initially identifiable data), could be beneficial
to answer community concerns which might not be currently apparent.
There is also a need for public health authorities to be proactive
in identifying potential hazards and acting to protect the health
of the people of Wales. For instance, a distraught mother who
has just given birth to a child with a serious deformity may not
appreciate that by having a register of all children born with
deformities in Wales it is possible to answer questions such as
"are children more likely to be born with a serious deformity
if living close to a landfill site?" It is necessary to use
data over several years to answer such queries and it is impossible
to guess at future concerns.
In Northern Ireland, a study has shown that
4-14 per cent of people with cancer deal with this by actively
denying the diagnosis. It is not possible to ask such people permission
for inclusion in a cancer registry. About 20 per cent of people
over 80 have dementia, and as cancer is much more common in older
people, it would not be possible to gain consent for many cancers
of these people in a cancer registry. The introduction of a similar
law in Germany has led to the closure of cancer registries, as
they are now too inaccurate to be of any use.
It is important to realise that these disease
registers fulfil several important functions other than public
health surveillance. For instance, there are government targets
to improve cancer survival following treatment and there has been
a large investment in cancer services. However, without complete
cancer registration it will not be possible to determine whether
this investment has brought about the desired changes. It will
also not be possible to evaluate many policy interventions.
In Wales the Patient Episode Database for Wales
(PEDW), the Cancer Registry (WCISU), the Congenital Anomalies
Register (CARIS) and the All Wales Injury Surveillance System
(AWISS) have experiencing difficulties in obtaining data. Breast
and cervical screening databases have also experienced difficulties,
despite their active involvement in patient care, as they require
information on non-participants in order to evaluate the programmes.
The same will be true for other screening programmes as they develop
eg newborn screening, antenatal, diabetic retinopathy. It is important
to note that all of these databases and services are funded by
the Welsh Assembly Government.
PEDW is the database of hospital admissions.
It contains details such as patients' names, addresses, NHS numbers
and details of diagnoses and treatment received. It requires identifiable
data to feed the cancer registry and to be able to map out the
addresses of people where there are concerns about environmental
effects on health. PEDW has contributed to studies of health effects
of landfill sites, incinerators, and coke works.
CARIS is a high quality congenital anomalies
register that collects information on all children born with a
deformity in Wales. As all deformities are not apparent at birth,
it uses multiple sources of information from hospital departments
to identify affected children and prevent double counting. CARIS
data can be used to answer concerns about environmental issues
(eg children with no eyes or missing limbs, born near the sea
or certain industries), as a surveillance system to rapidly identify
new hazards and thus lead to early control (eg thalidomide-like
events) and to evaluate the effectiveness of childhood vaccination
and screening services.
The Wales Cancer Registry (WCISU) contains details
of all the people with a diagnosis of cancer in Wales. It uses
multiple sources of information from hospital departments to ensure
it collects all cases and avoids double counting. WCISU data are
used to plan cancer services, measure the effectiveness of services
and progress toward improved survival, and to answer queries about
health concerns around industrial and other exposures.
The All Wales Injury Surveillance System (AWISS)
is funded by the Welsh Assembly Government to use information
on people attending Accident and Emergency Units to develop strategies
and interventions to reduce injuries. AWISS does not contain patient
names, but does contain addresses and the NHS number. The addresses
are used to attach a valid postcode and to identify certain property
types that might have higher injury risks. This has lead to intervention
to reduce injuries in nursing and residential homes, and in homes
and streets in deprived neighbourhoods. AWISS is used to support
many Assembly and UK government institutions (eg Communities First,
Road Safety, Fire prevention etc).
In a recent edition of the British Medical Journal,
Verity and Nicoll have described the threat of the new interpretations
and guidelines for the working of communicable disease surveillance
(BMJ 2002;324:1210-3) which lists difficulties with detecting
and controlling certain food borne outbreaks, maintaining vaccine
safety and effectiveness, and preventing further cases of severe
On the 23rd May 2002, The Secretary of State
for Health signed Statutory Instrument 2002 No. 1438 "The
Health Service (Control of Patient Information) Regulations 2002",
which give a temporary twelve months respite for cancer registration
and communicable disease control databases. Other databases have
not yet been considered by the Patient Information Advisory Group.
Public health surveillance and protection remain under threat.
The development of the Wales Centre for Health
comes at a time when the quality and accuracy of administrative
and clinical databases is dramatically improving and consequently
it has the potential to contribute substantially to the health
and well being of the people of Wales. However, unless there is
urgent consideration and resolution of the issues raised in this
letter, the Wales Centre for Health may not be able to carry out
many of the intended functions.
Professor S R Palmer
Mansel Talbot Professor of Epidemiology and Public
Director of Welsh Combined Centres for Public Health
Professor R Lyons
Professor of Public Health Medicine
Welsh Combined Centres for Public Health