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Source:
www.moh.gov.sg |
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Public Consultation on
National Registry of Diseases Bill |
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The Ministry of Health is proposing to
introduce a National Registry of Diseases (NRD) Bill. |
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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. |
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The proposed Bill will also address data
confidentiality by setting out a clear legal framework for protecting
collected data from improper disclosure. |
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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. |
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Current situation |
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Currently, the NRD includes registries for
cancer, renal failure, heart disease and stroke. |
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The information captured by the NRD is
mainly from public sector healthcare institutions who submit data
on a voluntary basis. |
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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. |
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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. |
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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. |
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Disease registries in other
countries |
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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. |
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Sweden and most other Nordic countries
also have extensive disease registration covering most diseases of
national importance including cancer and heart disease. |
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Proposed implementation |
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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. |
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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. |
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Over the next two years, MOH expects
to progressively bring other disease registries under the Act. |
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Key areas of NRD Bill |
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Comprehensive coverage of
reportable diseases |
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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. |
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Control the amount and type of
information collected |
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NRD will collect a pre-determined and
limited set of epidemiological data which will be prescribed in
subsidiary legislation under the NRD Act. |
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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. |
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Ensure privacy protection and
data security |
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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. |
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Patient consent would be required for
disclosure of identifiable data from disease registries to
researchers for public health research purposes. |
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Provide clarity and transparency
towards use of information |
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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. |
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Public Consultation |
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The Ministry of Health will now like
to get feedback from various groups on the proposed NRD Act,
specifically in the following areas: |
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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. |
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The public consultation document
can be found on the MOH
website. All feedback should reach the Ministry by 3 September
2007. |
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Source:
www.moh.gov.sg Press Release
23 Jul 2007 |
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Related Article: |
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MOH drafting a National Disease Registry Bill |
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FrontPage Edition: Mon 23 July 2007
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