Genomics industry researchers, planners and policy makers, clinicians and consumer representatives met in Canberra this month for InGeNA’s roundtable planning session to advance #precisionhealth in Australia by 2030.
InGeNA members and stakeholders joined in to share their experiences and contribute to the important conversations around building public and consumer trust and awareness, workforce needs, the complexities of governance, data quality, privacy and some major goals for national infrastructure including clinical implementation.
Some of the roundtable conclusions were:
- There had been real value from bringing together participants from across the sector to share their stories and learn from each other about areas outside their direct experiences
- There was a perceived need to leverage existing investments made by governments and others to expedite the application of clinical genomics and reduce duplication
- We need to continue investing in a confident and capable workforce to allow us to benefit from emerging technologies and deliver services to patients
- There is an ongoing need to engage all stakeholders across the sector to ensure that access to precision health is equitable and this can be supported through increased communication, collaboration and consistency
- There were opportunities to remove costs from the healthcare system through appropriate application of precision health
InGeNA Chair David Bunker told the audience there had been a great deal of engagement and investment in recent years looking at the future of precision health and genomics in particular.
He referred to the National Health Genomics Policy Framework published in 2017 and The Future of Precision Medicine in Australia by the Australian Council of Learned Academics in 2018, along with many health jurisdictions investing in policy development and system capability. Mr Bunker said:
“The response from industry – through reports developed by InGeNA over the last 12 months covers issues including the benefits of genomics, improving access, understanding the impacts of genomic data, and how we can assess and improve the capabilities of Australia’s genomics workforce. Industry is very much a partner in this process of engagement and investment, and is committed to placing the patient at the centre of care planning and delivery. But also, they are cognoscente of the role of funders, policy makers, researchers and importantly, our clinicians and health professionals. In recent months, InGeNA has given much consideration to the key question: How can industry support and coordinate with the broader sector to deliver better patient outcomes through clinical genomics?“
Mr Bunker said the roundtable came about after discussions with many members and partners, including Australian Genomics, on the need to focus on solutions and priorities for delivering on the promise of precision health by 2030.
In an introductory statement, consumer representative Monica Ferrie CEO, Genetic Support Network of Victoria said precision healthcare is often expressed as the right treatment for the right patient at the right time. Ms Ferrie said:
“But in implementation, it must be viewed as so much more than that. It is the choice of the right test with the right support for the right patient at the right time, the delivery of the right treatment with the right support for the right patient at the right time and the right support post treatment or the right re-testing at the right time. For precision healthcare to deliver the ‘right’ result, it cannot be simply about the clinical experience for the patient. There are a lot of ‘rights’ in that statement so who determines what is right.
Everyone in this room has a role to play in its delivery but at the centre must be the patient. And the patient as an equal participant in their health journey and decision making. Patient centred care is not about putting the patient in the centre so experts can circle around with the best of intentions making decisions that are believed to be in the patient’s best interests.
Precision healthcare by definition is more holistic than that. Precision healthcare is not about technologies and infrastructure, data and process, medicines and treatments. It’s about people. What we achieve here must be anchored by the needs of patients, families and communities. Every discussion must be underpinned by asking — will this produce better outcomes for patients, will this bring improved quality of life.”
A full report on the roundtables will be published in coming weeks.