Better health and ageing for all Australians

Pathology Funding Agreement

Genetics Working Party - Stakeholder Engagement Strategy

The strategy to be used by the Genetics Working Party to engage as widely as possible with interested stakeholders.

In this section:

Downloadable version of this document (PDF 136 KB)

Purpose

The purpose of this document is to detail the strategy in use by the Department of Health and Ageing (DoHA) and the Genetics Working Party (GWP) to enable effective engagement with all stakeholders with an interest in the current genetic testing arrangements.

Background

The GWP has been established to conduct a review of current genetic testing arrangements and has been tasked with providing advice to DoHA 30 December 2012. In addition to the GWP, a consultant or consultants will be engaged to assist DoHA and the GWP with an emphasis on stakeholder engagement.

Stakeholder engagement will be pivotal to the development and ultimate success of a national framework for the provision of genetic services. DoHA will bear primary responsibility for liaising with a range of stakeholder groups and for facilitating additional liaison between these groups.

Stakeholder Engagement Strategies

A range of strategies will be employed to engage with stakeholders and provide them with opportunities to provide input into, and have their issues addressed by, these reviews. These include:
  • the GWP itself, with its membership representing a broad range of genetic pathology and related interests and expertise;
  • the development of a Discussion Paper, comprising a series of papers, on which input will be sought from a wider range of stakeholders, including requesters;
  • the development and maintenance of an accessible website for the Genetics Working Party and related activities; and
  • targeted emails to a broad group of interested stakeholders providing updated information from key points in the process such as Outcome Statements following meetings of the GWP.

Genetics Working Party

Communication by the GWP will be critical to the development of options that DoHA may take to Government for consideration, particularly if Government will be seeking consensus or broad agreement to a proposal by stakeholders. The identified need to develop an alternative approach to funding genetic testing services has generated a large amount of interest amongst stakeholders and it will be important for each of these stakeholders to be provided the opportunity to have their views expressed and to have these views contribute to the outcome. Members will have a role in assisting DoHA in its interactions with stakeholders, particularly members’ own organisations, through regular communications and larger fora such as conferences. At various points during the process the GWP will also engage with broader stakeholder groups. Members will also have the role of liaising with the “champions” who are nominated to develop the issues papers that will form the bulk of the larger Discussion Paper.

Membership of the GWP

The Genetics Working Party will be a principal and visible forum for conducting consultations with external stakeholders. It may also be a useful forum for other work that requires engagement with genetic testing and related issues. The composition of the GWP includes representatives of each signatory to the Pathology Funding Agreement and other stakeholders, as follows:
  • Australasian Association of Pathology Practices (AAPP) (four representatives);
  • Royal College of Pathologists of Australasia (RCPA) (two representatives);
  • National Coalition of Public Pathology (NCOPP) (seven representatives);
  • Human Genetics Society of Australasia (HGSA) (two representatives);
  • Catholic Health Australia (one representative);
  • Consumers’ Health Forum (one representative);
  • Small jurisdiction (ACT, one representative); and
  • Large jurisdictions (Victoria and NSW, one representative each).

Meetings of the GWP

The first meeting of the GWP is scheduled to be held on 14 December 2011. It is anticipated that another four face-to-face meetings will be held during 2012 with some work taking place, as required, out of session.

The GWP will be chaired by the First Assistant Secretary, Medical Benefits Division.

In its broader engagement role the GWP will:
  • assist in the development of the Discussion Paper;
  • assist in obtaining comment from their organisations, the wider stakeholder group and the public; and
  • contribute to publicly available Outcome Statements (see below).

Outcome Statements

An Outcome Statement summarising the key outcomes of meetings will be drafted by the Secretariat following each meeting. The Outcome Statement will be circulated to members for comment. The final Outcome Statement will be:
  • published on the Department’s website;
  • provided to members for further circulation;
  • emailed to other stakeholders (see "List of key stakeholders for consultation" below); and
  • circulated to relevant areas within the Department.

Liaison with the consultant/s

The consultant or consultants will be expected to attend meetings of the GWP. The Secretariat for the GWP will serve as the primary point of contact for both the membership of the GWP and the consultant/s.

Discussion Paper

In order to enable stakeholders to provide input into the processes a Discussion Paper will be developed and released for public comment.

The Discussion Paper will be prepared with the assistance of the GWP, and made available for public consultation. Whilst the expertise of the membership is considerable, it is vital that input is sought from a wide range of stakeholders. A stakeholder forum, which could be held mid-year, may be a useful mechanism for obtaining a wide range of stakeholder input. Work on the discussion paper will commence at the first meeting. It is expected that several iterations of a draft, undertaken during meetings and out of session, will be required before a final Discussion Paper is ready for release. The Discussion Paper will frame a number of key questions on which input will be sought. Stakeholder responses will be compiled and analysed by the Secretariat, and used to further develop an alternative model for the provision of genetic testing services, including options for funding.

GWP members will be asked to disseminate the Discussion Paper to their respective member organisations/companies, and State/Territory representatives will be asked to distribute the paper to the relevant areas of Health Departments. The Secretariat will distribute the paper to all other relevant stakeholders within the Department and Australian Government, and will publish the paper on the Department’s website.

Website

A page on the Department’s website, dedicated to the GWP and related activities, has been established - Genetic Services. The page will include:
  • details of the GWP membership;
  • meeting dates and Outcome Statements;
  • details of any consultation processes taking place (such as the Discussion Paper);
  • other key events and milestones in the development of the framework; and
  • any other information able to be provided.
In addition, an email inbox has been set up to enable stakeholders to provide their input. The address is GeneticsReview@health.gov.au.

A separate and secure members-only page will be developed and maintained for members to access papers prior to them being made publicly available.

Reporting

The GWP is due to provide advice to the Department on current genetic testing arrangements by 30 December 2012, as stated in the Pathology Funding Agreement. At this point, it will be assumed that the Department will use the information to advise the Government.

List of key stakeholders for consultation


This list is not exhaustive, and will be reviewed each time consultation is planned. A mailing list will be developed and maintained by the Secretariat. This list will be approached when input is being sought on the discussion paper.
Government
  • Minister and Minister’s Office
  • All State and Territory Health Departments
  • NHMRC Human Genetics Advisory Committee (and possibly the Australian Health Ethics Committee)
  • AHMAC/CTEPC Advisory Group on Human Genomic Health Services
  • Other AHMAC Sub-committees (eg. the Australian Population Health Development Principal Committee, the Australia and New Zealand Horizon Scanning Network)
  • Medical Services Advisory Committee (Medical Benefits Division)
  • Pathology Services Table Committee (MBD)Quality Use of Pathology Committee (MBD)
  • Pharmaceutical Benefits Advisory Committee (Pharmaceutical Benefits Division)
  • Regulatory Policy and Governance Division (gene patenting etc)
  • Health Reform Transition Office
  • Therapeutic Goods Administration
Pathology Groups
  • National Pathology Accreditation Advisory Council
  • National Association of Testing Authorities Australia
  • Pathology Advisory Council
Consumer and Advocacy Groups
  • Consumers’ Health Forum
  • The Association of Genetic Support of Australasia
  • Special Interest Groups of the HGSA – Australasian Association of Clinical Geneticists; Australasian Society of Genetic Counsellors; Australasian Society of Cytogeneticists; Australasian Society for Inborn Errors of Metabolism; and the Molecular Genetics Society of Australasia.
  • The Fertility Society of Australia – Australian and New Zealand Infertility Counsellors Association
  • Australasian Genetic Alliance
Referrers and Test Requesters
  • Australian Medical Association
  • Royal Australian College of General Practitioners
  • Australian College of Rural and Remote Medicine
  • Royal Australasian College of Physicians
  • Clinical Oncology Society of Australasia
  • Australian and New Zealand Children’s Oncology Group
Other