Select Committee on Welsh Affairs Appendices to the Minutes of Evidence


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 have been

    —  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, Cardiff.

  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 expedience.

  (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 Assembly Government.

  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 (, 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. Confidentiality—protecting 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 are implemented.

  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 infectious diseases.

  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 Health

Director of Welsh Combined Centres for Public Health

Professor R Lyons

Professor of Public Health Medicine

Welsh Combined Centres for Public Health

previous page contents next page

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

© Parliamentary copyright 2002
Prepared 9 July 2002