Developing a national policy framework for newborn bloodspot screening

Newborn bloodspot screening (NBS) plays an important role in protecting all newborns in Australia from the effects of serious conditions, some of which are life threatening. NBS programs have been operating successfully in Australia for 50 years, and are supported by a strong stakeholder network.

A national policy framework is being developed to support the continued success of the programs and enable them to develop into the future.

Background

About NBS in Australia

NBS, also known as the ‘heel prick test’, is provided in all states and territories in Australia. It involves taking a sample of blood from the baby’s heel within the first few days after birth. This blood sample is then tested for approximately 25 treatable conditions.

About one in every thousand babies born in Australia will have one of the conditions screened through NBS. By enabling early diagnosis and treatment, NBS can prevent death, or intellectual or physical disability that would otherwise occur as a result of the diagnosed condition.

In Australia, NBS programs are funded by state and territory governments, and therefore all operate independently of each other. Screening is offered to all babies in every jurisdiction, with 99% of babies born in Australia receiving screening. There is currently no national funding or oversight provided for NBS programs by government.

Why a national policy framework is needed

While each NBS program is highly successful, the conditions for which they screen have remained unchanged since the mid-2000s. The current rates of technological and clinical progress mean programs need to ensure they are able to adapt and grow going into the future. The NBS National Policy Framework is being developed to do just that, by offering a national way to assess conditions for inclusion in NBS, and providing guidance that supports programs to progress in a nationally consistent direction.

The NBS National Policy Framework

A policy framework is an overarching document that outlines the key features of a program. Its purpose is to support those working in the programs by providing guidance and policy direction, relevant to the environment in which the program operates. A publicly available framework enables consumers and other stakeholders to understand what the program involves.

The NBS National Policy Framework (Policy Framework) will describe what is needed to support the ongoing success of NBS in Australia. It will include policies that outline:

  • guiding principles and a high-level description of the programs
  • how the programs should be implemented
  • what is needed to support high-quality and safe NBS
  • how the programs should be monitored, reviewed and evaluated to ensure they achieve their aim and objectives, and
  • a decision-making process that enables conditions to be assessed for inclusion in the programs.

Who is responsible?

Development of the Policy Framework is the responsibility of the Standing Committee on Screening (SCoS) (external site). This is a national group consisting of Department of Health representatives from all jurisdictions. It provides policy advice on screening to Australian governments.

SCoS established the multidisciplinary NBS Working Group to draft the framework, with input from stakeholders across Australia. WA Health, through the Office of Population Health Genomics, has coordinated the development of the Policy Framework by providing secretariat and project support to the Working Group.

The development process

The NBSWG has finished drafting the Policy Framework. It is currently being considered by national government committees, a process expected to continue into 2017.

The content of the Policy Framework was informed by:

  • significant consultation, including two stakeholder workshops and a national survey
  • consideration of the Australian health care system
  • current national and international policies, and
  • a review of academic literature. 

If you would like to learn more about the consultation workshops and survey, summary reports can be requested from NBSWG@health.wa.gov.au.

More information

If you wish to receive further information regarding the Policy Framework and its development, you might like to:

  • monitor this website for updates
  • email NBSWG@health.wa.gov.au or call (08) 9222 6843 with any specific questions
  • sign up to receive project updates via NBSWG@health.wa.gov.au