In 2022, Margaret, who is based in Melbourne, was awarded a Churchill Impact Funding grant enabling her to enhance her work with the Victorian Department of Health to convene a consensus workshop of state and territory representatives responsible for implementing VAD in their jurisdictions.
The project, largely completed by the end of 2022, was to agree on the items and definitions for a minimum dataset with the support of a data consultant to provide feedback on the agreed dataset and its analysis. A final workshop will see consensus on the minimum dataset. The goal is to develop a consistent national minimum dataset (NMDS) for voluntary assisted dying. This is now closer as a direct result of the work done by Margaret and her colleagues.
With VAD legislation being introduced in many jurisdictions around Australia, Margaret also chairs a research sub-committee on research and data-related structural issues reporting to the Victorian VAD Review Board.
Reflecting on the results of the work undertaken with the assistance of the Churchill Trust Fellow Impact Fund, Margaret says she has been assured that getting the buy-in of all states has been ‘a significant achievement’. Achieving a truly national data picture is unlikely, though, until at least 2024, given that NSW begins VAD at the end of 2023 and the two territories are still to set commencement dates.
‘On a positive note, this provides more time to keep working together towards a formal national relationship,’ Margaret says, noting that the project now has comprehensive input from each state and a New Zealand representative. The goal is well within sight.
The onus currently rests with the Victorian VAD Review Board, which will take responsibility for further progressing this work, including the timing of a formal relationship around national data. The end beneficiaries of this work will be the broader community and the many clinicians responsible for end-of-life care.
Meanwhile, the data continues to be refined, as various state legislation is enacted.
‘I anticipate this will continue for some time,’ Margaret says, ‘until each state is settled with agreed data,’ showing that despite the emotiveness surrounding the topic, facts and figures remain a vital part of the decision-making process.