Solving complex problems facing today’s children and tomorrow’s adults
Launched in 2017 by Victorian Minister of Health, Jill Hennessy, and CEO Paul Ramsay Foundation, Simon Freeman
Every parent wants the best for their child.
Addressing the childhood roots of ill health and low economic productivity may be the best way to lessen the burden of ageing and increase the population’s productivity to meet tomorrow’s needs.
GenV has set out to solve four key issues:
- Turn around the unprecedented rates of adult diseases (such as heart disease, diabetes, kidney failure, osteoporosis). Without action, the GDP health spend is predicted to top 13% by 2030.
- Reduce the burden of modern epidemics for children, such as school failure, depression, obesity, autism, asthma, and antisocial behaviours. Today’s children need:
- Better treatments for modern childhood problems
- Better services that are equitable, consistent, effective, needed and affordable
- Better preventive care, to ensure the best health and development for tomorrow’s adults
- Better predictive tools, so care can be tailored and targeted, and unnecessary care avoided
- Change the landscape of how large scale research happens, because traditional research methods are too cumbersome, short-term and costly to scale up to the level needed.
- Reap the full benefit of Victoria’s investment into its outstanding health and educational services. Our statewide data infrastructure is under-utilised for innovative solutions.
Victoria currently has excellent but limited connectivity of statewide services/datasets, on which billions of dollars are spent annually.
To create the world’s most exciting children’s health, development and wellbeing project to answer today’s pressing policy and practice questions.
GenV aims to engage researchers, policymakers and practitioners - in Victoria, Australia and internationally – in the quest to find practical, testable and translatable solutions to issues for Victorian children in real time as they emerge. This drives discovery, change and a lasting legacy.
The resulting international research hub will benefit both children now and the adults they become.
Why here, why now?
The health of our children is more important now than at any other time in our history. It is their productivity, emotional resilience and good health that will support ageing populations both socially and economically. GenV gives us the power to ensure that our children are supported to reach their full potential as happy, healthy, highly-functioning and productive adults.
GenV builds on a unique Victorian confluence of experience and statewide capabilities, built over many years.
It will embed a research capability into health and education services, creating a data-active, self-learning state. It could not be done elsewhere.
Where has GenV come from?
GenV grew from a ‘Big Idea’: that a large whole-of-state initiative could speed up solutions to the major issues facing children today, and the adults they become. By 2035, it aims to have solved pressing questions for Victoria’s and Australia’s next generation, and to be known internationally as a cornerstone for collaborative children’s population research and innovation.
In May 2017 the Paul Ramsay Foundation announced foundation funding of $24.5 million to make GenV a reality. In December 2017, Victorian Minister for Health Jill Hennessy launched GenV with PRF CEO Simon Freeman and MCRI CEO Kathryn North.
Much has been achieved in the ensuing 9 months. GenV’s team has grown from 1 to 21 people. In a very short period of intense focus and collaboration, it has delivered a remarkably mature LifeCourse Repository for GenV’s Minimum Viable Product by August 2018, as well as a range of broader foundational activities.
The GenV proposition
GenV has thrown down a novel gauntlet: can an entire system (the state of Victoria) become a single dynamic health and solutions platform for children? Collaboration, inclusivity, sustainability, enhancement, systematized processes, scalability and excellence are the principles at its heart. Its strategy is to build a unique, flexible and dynamic ‘whole of state’ infrastructure that will break down the barriers between different ‘types’ of research, speed up the pace of discovery, and translate that into tangible actions that can help children now: better prevention, prediction, treatments and service delivery.
GenV represents a fundamental shift in how data are collected and used. It is built on Victoria’s world-leading early childhood and health infrastructure and systems, which do not exist in many other OECD countries. GenV adjusts, adds and enhances at key ages.
Many avenues can be explored simultaneously, flexibly and efficiently, reducing costs and providing a framework in which even marginalised groups can participate fully. It’s a whole new approach to how data and research interface with the policy and practice world. Partnerships and implementation frameworks drive knowledge translation to ensure impact.
What is GenV doing?
Each of GenV's four inter-related streams has its own goals and achievements.
GenV Cohort 2020s
Redesigning children’s research to scale up in size, tempo, flexibility, sustainability and breadth of focus.
GenV is now designing its methods to approach parents of all 160,000 Victorian newborns in 2021-22 to participate across their lifecourse, spanning best to worst wellbeing, health and development, and embedding biology in society.
The Cohort 2020s will support discovery, registry, intervention, geospatial and services research; drive use and curation of routine data and biosamples; and embrace digital innovation.
GenV Data Innovation
Designing and implementing the multiple IT and analytic systems needed to achieve GenV’s vision.
It will integrate the diverse datasets collected by GenV and collated from health, education and social services into a coherent whole that is easily visualised and accessed by researchers and analysts.
A data resource of this size and scope will transform the speed with which data becomes knowledge, and will deliver value for many decades.
GenV Bio Discovery
Establishing a state-of-the-art, accredited, high-throughput bio banking facility, on a scale not previously seen in Victoria.
Its novel focus is on bringing into research-quality curation the samples that mothers and children provide that would not otherwise contribute to solutions.
GenV is thus ensuring that facilities are not only ready for the Cohort 2020s, but have the capability to provide services and leadership in biobanking locally and nationally.
GenV Solutions Hub
The “engine room” of GenV's impact. It will drive GenV’s science, people capacity, method cores and knowledge translation, and enable broad-based funding for GenV's analysis and research.
The Solutions Hub is structured as a dynamic collaborative space with flexible capabilities to meet the changing environment and grasp new opportunities.
All the streams are overseen by the Program Office, responsible for administration, finances, operations, risk management, stakeholder engagement and communications, and GenV’s overarching Program Logic.
What are GenV's next steps?
GenV’s philosophy is that benefit should not wait until the 2020 Cohort bears fruit, as this will not be until 2023 at the earliest. Instead, it should deliver value at every step of the journey. This offers many opportunities for early leadership. Some are mentioned here.
- GenV’s LifeCourse Repository: This is designed to house not only GenV, but multiple studies. Already it holds two of the MCRI’s flagship studies linked to administrative data, and already these datasets are being used to address novel research questions. There is potential for it to:
- Manage the data for all LifeCourse cohorts at Melbourne’s Children’s Campus; and
- Hold datasets for LifeCourse cohorts elsewhere, including large new birth cohorts.
- Next-generation birth cohorts: A new wave of large birth cohorts is evident in Australia. For maximal value, these would balance (1) uniqueness, (2) complementarity and (3) harmonisation. GenV will promote this coordination. Specifically, it will ensure that its pioneering methodologies are applicable throughout Australia.
- Innovative methods development – examples of GenV’s ‘Research into Research’ include:
- E-Phenome: Taking research to the population level means also measuring the child’s developing characteristics, or ‘phenome’, at this same level. Genomes without phenomes, prediction without outcomes and trials without endpoints are useless. Yet early childhood is a measurement ‘black box’ – despite it being the critical period for developing minds, brains and bodies. We propose a scalable digital phenomic suite, which we believe would be transformative. No like initiative exists internationally.
- Recruitment and follow-up: Our Vanguard studies and real-time Big Data dashboard will test and refine how to achieve best uptake and retention. Such experimental evidence would greatly reduce waste and enhance the value of large studies.
- Methods Development: Many biosamples are out of reach as high-throughput methods to retain them do not exist. Yet some (eg placenta) would have immense value in knowing what makes for a healthy fetus and child. We propose a suite of studies to scale novel biosamples to the population, within our vision of a highly-streamlined GenV.
- National and international collaborations – examples of GenV’s directions include:
- HeLEX (Health, Law and Emerging Technologies) at Melbourne Law School - proposal addressing legal and ethical challenges of transformative big data collection and use
- ANU Centre for Social Research and Methods – a formal collaboration is planned for experimental research into digital survey methods within GenV
- The I4C Collaboration – GenV has joined this consortium of very large international studies examining the precursors of childhood cancer
- DRUK ATLAS (Access points to Tissue, Longitudinal data, Archives and Samples) –GenV is one of two international studies joining development of this UK-wide initiative
- QUEEN – GenV is a foundation member of this UK-led ‘Community of Practice’ examining methods for embedding intervention research in large population studies
- Obstetric and newborn networks across Victoria and Australasia.
GenV’s focus areas
Six focus areas for the Solutions Hub have been identified for their burden, cost and slow progress, with inequity and vulnerability as overarching themes. These focus areas are not intended to be exclusive or definitive, but to help guide and organise the initial work of GenV:
Wellbeing (including mental health, vulnerability, disparities and exclusion)
Obesity (including cardiovascular and metabolic health)
Allergy (including food allergy, asthma and autoimmune disease)
Infection (including inflammation and use of antibiotics)
Brain (including neurodevelopment, educational attainment, special needs and disability)
Mothers & Babies (including pregnancy)
Innovation, inclusion, efficiency
GenV’s design features systematically create a powerful platform for research, practice and policy.
|Innovations & efficiencies|
Impact and Implications
Health & education partnerships:
A new understanding of how health affects learning and how learning affects health
Targeting everyone, GenV includes the disadvantaged, remote and indigenous, its structures supporting involvement and re-entry
Big research is not small research multiplied: the statewide design eliminates multiple costs and provides multiple points of re-entry
GenV can study multiple pathways to common and uncommon outcomes, and develop individualised predictive tools
Low cost/high benefit:
GenV is built on existing statewide services, infrastructure and powerful population health/education datasets
Multi-directional information flow:
GenV catalyses changes that families, services, researchers, and government already want - research that ‘gives back’ in order to succeed
Supports multiple lines of enquiry, including research on vulnerable groups and population, place-based, intervention and health services research
Outcomes can be studied over many years, because they are already collected within this joined-up infrastructure
GenV adjusts, adds, enhances:
Minor changes have major impacts, overcoming road blocks
1: Ideating (2013 to 2017)
- The idea of GenV has been established and initial support obtained
- Key milestones, target financial model, short-term influences and success criteria all exist
2: Conceptualising (2018)
- Develop the ‘minimum viable product’ to demonstrate the viability of the program
- Recruit resources committed to the idea and confirm funding for the coming three to five years
- In this phase demonstrate to initial users/funders the outcome the program is trying to achieve
3: Establishing (2018–2019)
- Build the core elements of the program to ensure it is able to operate at scale
- Ongoing capability investment and development, including validating process, resources and technology requirements to facilitate success during the scale phase
- In addition, focus on ensuring ongoing sustainability post-2023
4: Scaling (2020-2022)
- Building out the proposed program at scale, including embedding systematised processes
- Any lessons learned from the Establishing stage will be incorporated to establish long-term success
5: Sustaining (2023 onwards)
- Focus of this stage is on achieving the program’s stated outcomes, thus maintaining stakeholder interest and buy-in to securing ongoing funding (and driving self-sufficiency)
- Perform continuous improvement and innovation across the GenV program