Personalising precision medicine
By Monica Ferrie (Consumer Representative) and Kathy Campbell, part of the Precision Health Community of Practice Committee
The journey to needing bespoke care is also bespoke.
The health ‘system’ and our care model are focussed on the sick. A full life is so much more than not being sick. Some of us live with lifetime disease or disability, yet that does not define us and nor should it. What we all want for ourselves and our children is a life of opportunity, of freedom, of choice, of equity and equality, and of happiness.
Precision medicine will help us manage medically but what about our exit from the health system and how to stay well or manage within our own health context?
Diagnosis is related to our conditions, disabilities and required interventions but what about diagnosing the impact on life and quality of life? Managing the impact becomes directly linked to the ability and capacity of the individual to advocate for and to pay. Difficulty managing the impact is what often leads an individual back into the health system – the stress makes us sick.
We are so much more than our conditions!
In 2018 as part of the Horizon scanning series, the Australian Council of Learned Academies (ACOLA) published a report on ‘The Future of Precision Medicine in Australia’. This paper is a comprehensive analysis from many angles about what’s happening, what opportunities exist, what the future may bring, the underpinning science and the system implications – or at least it was in January 2018.
We are living in times of such rapid change that in some cases the future is here, in some cases the future forecast is no longer the one we want or need and, in some cases, we are still looking forward with hope.
The position of health consumers however remains the same.
We want and need fair and equal access to emerging technologies, treatments and services, to clinical trials, to answers and support.
Our landscape is also increasing in complexity. We have more diagnosis without treatment options; more pre-natal choices; more need for support from peers and support systems such as National Disability Insurance Scheme (NDIS) and mental health services. Our families are under increasing pressures of: disclosure, financial, uncertainty as ageing and mental health challenges become apparent; more complex and chronic conditions because people survive with them longer. Much of this is occurring outside what is traditionally called the healthcare system.
To reaffirm the HISA Precision Medicine Community of Practice’s definition:
Precision Medicine seeks and analyses a wide range of patient information, such as clinical observations, biomarkers (including genomics) and patient generated data. It triangulates this information within the context of lifestyle, behaviour, environment and medical history to inform and personalise prevention, diagnosis and treatment at an individual, patient cohort and population level. As an emerging clinical practice, precision medicine will adapt and transform over time by incorporating innovation and discovery, resulting in bespoke care.
So, precision medicine as a strategy for improved care needs to embrace precision impact planning. Artificial Intelligence technology may allow us to correctly interpret external data, to learn from such data, and to use those learnings to achieve specific health and well-being goals. We cannot wait while the technology emerges and moves to mainstream.
We need precision medicine plans that include specialists, GPs and allied health as well as precision impact plans that include education, transition, service access, NDIS, support for families and individuals financially and with advocacy.
Stop asking me to do what I cannot, with things I can’t access, to be someone I don’t want to be – let me be the best me I can.
CEO, Genetic Support Network of Victoria
Director, Ockham Consulting Pty Ltd