Press Releases
Public Consultation on National Registry of Diseases Bill
23 July 2007
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23 Jul 2007
The Ministry of Health is proposing to introduce a National Registry of Diseases (NRD) Bill. This is to enable MOH to collect relevant medical information for robust statistical analysis and health policy research to support formulation of effective public health policies on disease prevention and control.
The proposed Bill will also address data confidentiality by setting out a clear legal framework for protecting collected data from improper disclosure. The proposed Bill will also specify consent requirements and purpose of use for the release of data by the NRD to researchers for public health research, or to doctors for management of their patients.
Current situation
Currently, the NRD includes registries for cancer, renal failure, heart disease and stroke. The information captured by the NRD is mainly from public sector healthcare institutions who submit data on a voluntary basis. There is a need for data from the private sector to be included so that the dataset is complete and useful for national level planning.
There is also a need for greater clarity to the public and private healthcare providers on the legal basis for the disclosure of medical information to NRD. This is consistent with the Bioethics Advisory Committee’s recommendation that there should be proper rules governing the access and use of personal information for medical research, to reassure research subjects on the confidentiality of personal information.
Disease registries in other countries
Singapore is not unique in proposing such legislation. Many developed countries including USA, Canada, Australia, New Zealand, Denmark, and Sweden have mandated cancer registration through legislation. Sweden and most other Nordic countries also have extensive disease registration covering most diseases of national importance including cancer and heart disease.
Proposed implementation
The Ministry plans to adopt a phased approach, with cancer as the first disease to be included under the NRD Act as it is the leading cause of death among Singaporeans. The cancer registry is also the most established and processes for collection of data are well defined. A phased approach would also allow healthcare providers to familiarise themselves with the requirements of the Act. Over the next two years, MOH expects to progressively bring other disease registries under the Act.
Key areas of NRD Bill
Comprehensive coverage of reportable diseases
It will be mandatory for all healthcare institutions to notify all new cases of diseases which are specified in the NRD Act. Upon this initial notification, NRD is then empowered to access relevant medical records in healthcare institutions to collect the data that is required.
Control the amount and type of information collected
NRD will collect a pre-determined and limited set of epidemiological data which will be prescribed in subsidiary legislation under the NRD Act. The information allowed to be collected will be restricted to those that are required for national health policy requirements, such as the particulars of the patient, the notifying hospital/clinic and the diagnosis.
Ensure privacy protection and data security
In addition to the stringent security measures that are already in place, the legislation will make mandatory provisions for proper data protection by officials and researchers in receipt of identifiable data and any breach a punishable offence with jail term of up to 12 months or fines of up to S$10,000 or both. Patient consent would be required for disclosure of identifiable data from disease registries to researchers for public health research purposes.
Provide clarity and transparency towards use of information
The legislation will clearly lay down the rules as to the purpose, to whom and in what form, the information can or cannot be released. For purposes that are congruent with national public health programmes, requests for detailed statistics or identifiable data have to be approved by MOH.
Public Consultation
The Ministry of Health will now like to get feedback from various groups on the proposed NRD Act, specifically in the following areas:
• Healthcare institutions and providers on their compliance with proposed data collection requirements, processes and powers.
• The public on adequacy of proposed patient confidentiality requirements and processes.
• Medical and research community on the proposed purposes of use and governance framework for protecting patient confidentiality.
The public consultation document can be found on the MOH website. All feedback should reach the Ministry by 3 September 2007.
References