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CHAPTER 4: INFORMATION AND MANAGEMENT
INTRODUCTION
4.1 Public health surveillance can be defined as "the ongoing, systematic collection, analysis, interpretation, and dissemination of data regarding a health-related event for use in public health action to reduce morbidity and mortality and to improve health".
4.2 Public health surveillance seeks to develop a composite picture of the level of ill-health and its causes in a given population. Information is collected on an ongoing basis on diseases, the common exposures leading to them and the hazards causing the diseases themselves. This can act both as an alert mechanism to inform immediate action and provide the longer term information required to help shape policy and practice and monitor and evaluate its implementation.
CURRENT SITUATION
4.3 At present, Scotland has a two-pronged approach to notification involving:
- the statutory requirement to report the limited list of diseases; and
- the non-statutory reporting from public laboratories of specific organisms.
4.4 The legal requirement to notify certain infections stems from the Infectious Disease (Notification) Act 1889. Medical practitioners, heads of households and keepers of common lodging houses under the Act are required to report cases of listed fevers and diseases to the Chief Administrative Medical Officer of the NHS Board and a fee is paid to general practitioners for each notification. The list of notifiable conditions has been maintained since 1889 ( Annex F). Currently it is possible to add, but not to remove notifiable conditions from those listed in the 1889 Act and the list now consists of 33 clinical conditions, around 20 of which occur infrequently (if at all). In the 117 years of its existence, there has not been a single prosecution for failure to comply with the notification requirement.
4.5 Since 1974, an additional list of reportable infections has been drawn up in Scotland for infections which have been confirmed in a laboratory. These are not a legislative requirement, but provide the basis for monitoring infections.
4.6 Requirements to report diseases and public health hazards to public health agencies include:
- European Union Directive ( Decision No 2119/98/EC of the European Parliament and of the Council:http://www.europa.eu.int/scadplus/leg/en/cha/c11548b.htm ) which places a duty on member states to report on certain infectious diseases. Many of the infections covered are not yet reportable in Scotland and with the establishment of the European Commission's new European Centre of Disease Prevention and Control in Sweden it will be both necessary and appropriate for Scotland to support a unified approach.
- The International Health Regulations ( IHR), developed by the World Health Organization, in consultation with its Member States, aim to prevent the cross-border spread of disease. Regulations include routine measures at airports and seaports, to ensure maximum security against the international spread of specific diseases. The IHR 2005 will allow greater focus on a wider range of procedures and practices to control public health emergencies of international concern. The definition of disease in IHR 2005 includes not only an illness or medical condition caused by infection, but also one caused by contamination, such as chemical or radiological contamination.
- The Zoonoses Order 1989 specifies salmonella and brucella as organisms which, when carried by poultry or animals, constitute a risk to human health. Article 8 of the Order specifies reporting requirements and defines "animals" and "birds". The Order gives a statutory duty to inspect; take samples; declare infected places; prohibit movement of animals, birds and dung; clean and disinfect. In addition, there is a reporting requirement.
ISSUES FOR CONSIDERATION
The design of a new system for statutory notification to public health agencies
4.7 It is proposed to replace the current two pronged, legal and non-legal reporting approach to notification with a new set of statutory duties which would apply to all public and private institutions (for example, all medical practitioners, hospitals, laboratories). The new duties would be:
a) the notification of diseases, states or conditions for urgent public health action by a clinical professional;
b) the reporting of hazards: less urgent but required for on-going control monitoring of risks to public health by public and private sector organisations
a) Notifiable Conditions
4.8 A notifiable condition would be defined as any disease in an individual with a significant impact on health, or a condition which places an individual at higher risk of developing such a disease, when knowledge of such an occurrence would help public health agencies take urgent action to prevent others in the community being exposed to the hazard thought to be the cause of the individual's disease or condition.
4.9 The list of conditions and diseases to be notified clinically would be defined in regulations; and would include contamination by chemicals and radiation, in line with IHR 2005. Criteria for inclusion in any notifiable list would be that the hazard, disease or "health risk state" poses an appreciable risk to the public's health. Notifiable conditions could be of three types:
- diseases, e.g. tuberculosis
- organisms, e.g. Clostridium botulinum
- "health risk states", e.g. close contacts of SARS cases.
4.10 A statutory duty would be placed on doctors and other relevant professionals, eg bio-medical scientists to inform their local NHS Board and their patients of the notifiable condition so that they and the Board's public health department can take early and effective measures to manage the risk to public health. Although an individual's consent should always be sought, the Confidentiality and Security Advisory Group for Scotland ( CSAGS) Report 2002 stated that individual consent is not required where there is a legal requirement to pass on information. Information about such an individual could be shared if necessary with a third party if the third party organisation needs to know to take measures to reduce the risk to public health. The local NHS Board should inform Health Protection Scotland of such notifications.
4.11 To facilitate timely and effective public health action, a time limit for notification would be specified in regulations. It would be an offence incurring a financial penalty not to notify a specified condition.
4.12 The fee payable to general practitioners would be dropped. Under current arrangements the payment is, in reality, not always paid, and indeed the fee was not included within the new General Medical Services contract.
4.13 Scotland would maintain its current approach, which ensures that the implementation of certain statutory control measures does not depend on whether the disease being dealt with is notifiable. This allows flexibility to respond comprehensively to public health incidents, whatever their source.
b) Reportable Hazards
4.14 A "reportable hazard" can be defined as any micro-organism or environmental hazard, information about which will enable public health agencies to monitor the extent of the hazard in a population or environment and hence assess the risk to the public health and develop measures to reduce this.
4.15 A statutory duty would be placed on public and private sector organisations involved in testing for the presence of micro-organisms and environmental hazards in human, water, food and environmental samples to report on a defined regular basis to a named public health agency, the numbers and details of samples in which a reportable hazard is detected; making hazards statutorily reportable will mean that prior consent from the patient will not be required.
4.16 The reportable hazards and the requisite details on them would be specified and should comply with EC and WHO requirements.
Extending the obligations on organisations to report on surveillance for health improvement and service design
4.17 Until now, the statutory notification and surveillance system has primarily existed to support the control of communicable disease. In recent years however, concerns have been expressed about shortcomings in the comprehensiveness of reporting on conditions such as ischaemic heart disease, cancer and mental health and the consequent impact upon our ability to target and monitor the effectiveness of preventive and treatment services. Scotland already has several voluntary systems and procedures for reporting non communicable diseases, but it could be possible to extend the provisions for reportable hazards to include certain reportable conditions, making reporting of them to public health agencies a statutory requirement.
4.18 A system of this kind might involve:
- defining a "statutory reportable condition" as a disease of public health significance or specific measurable factors leading to its occurrence, knowledge of which will facilitate the planning and delivery of services to prevent or treat it;
- a statutory duty being placed on public and private sector organisations involved in caring for individuals suffering from the disease or investigating its extent in a population to report on a regular basis the numbers and details about those suffering from the disease and specified factors involved in its causation;
- specifying in regulations the diseases of public health significance or specific measurable factors leading to their occurrence to be reported, along with any other requisite details. Making diseases statutorily reportable in this way would pre-empt the need for individual consent.
4.19 In recent years, the need to alert blood transfusion and surgical services about people who are at high risk of developing v CJD, but who were not themselves cases of infection, led to questions of whether the notification system should be extended to cover "at-risk states". This has been reemphasised by the emergence of SARS and avian influenza.
4.20 Individuals at risk of v CJD may also require long term public health follow-up to see if they go on to develop the disease. Information from such follow-up will inform how society should respond to the threat in a proportionate manner. This entails their details being placed on a database with or without their consent.
In England and Wales, a legal framework for this exists under Section 60 of the Health and Social Care Act 2002. The need for a similar power in Scotland, and to cover other "at risk" individuals perhaps through reforming the legislation surrounding notification, is for consideration. The resource impact of collecting accurate and high quality information and the ethics of legislating in order to pre-empt consent are serious issues for any proposed change.
Obligations on public health agencies to ensure that any such information collected is used appropriately, effectively and efficiently
4.21 The principles underlying legislation on public health surveillance should be consistent with the reasonable expectations that a modern society might have in relation to its public health and health protection systems. These are:
- individuals and organisations have both rights and responsibilities in relation to protecting public health; the balance between individual rights and responsibilities will vary according to the nature and scale of risk;
- public health measures should be equitable, proportionate to risk and evidence-based, designed to deliver optimal community and patient-focused outcomes, and reviewed in the light of experience or surveillance;
- public organisations and bodies should work in partnership to protect and improve public health, and, in so doing, should be outward-looking, vigilant and prepared, clear about their respective roles, and open and accountable;
- public health requires clear leadership capable of taking swift action and responding to new hazards as the 21st century unfolds.
4.22 It is therefore proposed that, before making a condition or hazard notifiable or reportable, the following are considered:
- cultural and moral sensitivities: including the issue of potential stigmatism within the community;
- public health significance: the need for clarity about the level of risk involved, how data will be used to reduce it and how compliance will be measured and monitored;
- current ethical and legal guidance: including General Medical Council guidance Serious Communicable Diseases and Confidentiality: Protecting and Providing Information; the advice of the SEHD/ NHS Scotland Confidentiality and Security Advisory Group for Scotland ( CSAGS); the Data Protection Act and advice and guidance from the Information Commissioner;
- commercial considerations: as with individuals, the reporting and handling of data from commercial companies which is potentially prejudicial to their interests, requires due attention to confidentiality.
Whether particular diseases and conditions should be excluded from any new notification system
4.23 Consideration is being given as to whether HIV, or other sexually-transmitted infections, should be notifiable. Sexually-transmitted diseases are viewed by some as stigmatising, whilst past debates on whether HIV should be made notifiable have centred upon whether notification might deter people from coming forward or whether by excluding a particular condition from legislation it actually makes the stigma worse.
Question 2
Notification Options
Views are invited on:
2.1 a new system of statutory notification to public health agencies, which:
a) has two lists: one on notifiable conditions and the second on reportable hazards
b) identifies three types of notifiable conditions:
- diseases, e.g. tuberculosis
- organisms, e.g.Clostridium botulinum
- "health risk states", e.g. close contacts of SARS cases
c) does not require consent for notification since it will be a legal requirement to notify and report to NHS Boards or other appropriate authority
d) includes the option to place a statutory duty on doctors to inform the patients of the notifiable condition as soon as possible
e) defines a "reportable hazard" as any micro-organism or environmental hazard
f) places a statutory duty on public and private sector organisations involved in testing for the presence of micro-organisms and environmental hazards in human, water, food and environmental samples to report on a defined regular basis to a named public health agency, the numbers and details of samples in which a reportable hazard is detected
g) specifies the reportable hazards and the details required, including to comply with EC and WHO requirements
h) specifies a time limit for notification and reporting in regulations
i) specifies a penalty for not notifying in regulations
j) discontinues current arrangements for payment of a fee per notification to general practitioners.
2.2 proposals for developing an additional notification system for non-communicable diseases that:
a) defines the "statutory reportable conditions"
b) places a statutory duty on public and private sector organisations involved in caring for individuals suffering from the disease or investigating its extent in a population to report on a regular basis the numbers and details about those suffering from the disease and specified factors involved in its causation
c) specifies the diseases and the details required or the specific measurable factors leading to their occurrence to be reported
d) does not require consent for notification since it will be a legal requirement to notify and report
e) specifies a time limit for notification and reporting in regulations
f) specifies a penalty for not notifying in regulations.
2.3 the proposal that the key issues to be considered prior to making a new condition or hazard reportable should be:
a) cultural and moral sensitivities
b) public health significance
c) current ethical and legal guidance
d) commercial considerations
e) resource and quality issues.
2.4 whether to continue to exclude sexually transmitted infections from any new notification system and whether any other disease or condition be excluded
2.5 whether there are there any other legislative options for surveillance which should be considered.
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