2.2 Legislation

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There are two types of reporting used for congenital anomalies surveillance: mandatory and voluntary.

Mandatory Reporting

Mandatory reporting means that staff from participating facilities, such as hospitals, are required to keep a log and report all cases of live births and stillbirths with congenital anomalies to the surveillance programme, within a specific timeframe and in a specific format. Mandatory could mean mandated by either normative or legislative regulations.

Possible responses:

  • Provides structured/reliable data
  • Provides countries with evidence of the need to invest in sustainable congenital anomalies prevention programmes
  • Provides timely information to help develop policies to distribute resources for babies born with congenital anomalies
  • Facilitates the analysis of prevalence and trends for monitoring congenital anomalies
  • Informs legislation that permits reporting of private health information for public health
  • Provides access to data

Possible responses:

  • Increased workload
  • Reduced quality of services because time spent may be taken away from other services
  • Mandatory reporting does not guarantee that staff will comply
  • Mandatory reporting does not guarantee data quality
  • Although there are some disadvantages to mandatory reporting, it is important to identify these disadvantages, in order to find the proper solution for them.

Voluntary Reporting

Voluntary reporting means that staff from facilities participating in the surveillance programme, such as hospitals, are encouraged by the officials responsible for the programme to keep a log and report all live births and stillbirths with congenital anomalies to the surveillance programmes, but they do not have to comply.

Possible responses:

  • Voluntary reporting might be a good starting point that can lead to mandatory reporting

Possible responses:

  • Unstructured/unreliable data
  • Potential for skewed prevalence trends due to underreporting or overreporting of data
  • Uneven distribution of resources, based on actual need
  • Reporter bias

Type of Reporting System

Ask participants to provide responses aloud, and write responses on the flipchart.

Table of Contents

  1. Module 2: Introduction to Planning Activities and Tools
  2. 2.1 Logic Models
  3. ›2.2 Legislation
  4. 2.3 Privacy and Confidentiality Issues
  5. 2.4 Partnerships and Funding
  6. 2.5 Communicating with Parents
  7. 2.6 Evaluation Questions 2