From Participation to Accountability in Health Care for young people
Examining how accountability can be embedded into health research, service design and service delivery
Our Vision
Young people aged 12-24 years lose out in our healthcare system.
Their healthcare needs are often invisible, unrecognised, dismissed, or not well managed. Navigating to the right health service at the right time is compromised by a confusing system, age restrictions, cost, lack of accessible and respectful services and clinicians. This is compounded by multiple and compounding forms of discrimination and disadvantage (intersectionality), low health literacy, high stigma and feeling discriminated against or misunderstood.
Current conditions reveal a critical need for tangible and substantiated accountability to young people. Existing systems and services designed to support young people are marred by inequality, a lack of transparency and inadequate accountability, and the obligation of organisations, institutions and governments to give due weight to the views of young people in decision-making is not well understood.
While there is increased enthusiasm for youth participation in health research, policy and service development, engaging in a meaningful way with young people is not standard practice. Evidence suggests that a focus on accountability to young people will help to dramatically increase the understanding and practical change required to transform the system.
Through our work with the Wellbeing Health & Youth (WH&Y) Commission and our partners, Accountable Futures Collective we will investigate what accountability in health means and develop youth-centred evidence and mechanisms to support change.
Accountable Futures Collective is a systems change initiative redefining and driving accountability to young people. Our vision is for a society that deeply values children and young people and creates the conditions for them to thrive.
Accountable Futures Collective works with young people most harmed by systems to increase their influence and ability to shape their own lives and the society they will inherit. Accountable Futures Collective moves BEYOND just amplifying voices of young people, towards enabling young people to co-create mechanisms, where governments, services and communities become accountable to them for the role they play in their lives.
Our Project Plan
This project partners with young people in NSW to define, investigate, design and test mechanisms to support researchers, service managers and policy makers to embed accountability to young people in their way of doing health research, service design and delivery.
WH&Y Commissioners and Accountable Futures Collective Impact Board members have co-created the project. They are Research Associates and make up a Steering Committee.
This project will use a co-research (Duggan, 2021) and participatory design process (Hagen et al, 2012; Collin et al, 2017). Building on our Youth Engaged Policy process and indicators tool we will undertake cycles of co-research and co-creation to: investigate, design and test mechanisms for youth-centred accountability in health.
The project aims to address the disparity in access and quality of health care to young people by partnering with young people in NSW to investigate, design and trial mechanisms that create more accountability to young people in health research and health care. Qualitative textual analysis of interview and workshop data and quantitative analysis of surveys conducted with a range of health service providers and young people will be used to answer the following research questions:
- What does accountability in health mean to young people?
- What are youth-centred indicators of accountability in health?
- What mechanisms can support services and professionals to be accountable to young people in ways that support their health and wellbeing?
- What change does a youth-led focus on accountability make in youth health?
Project History
This project extends on work undertaken in a five-year collaboration as a part of the NHMRC Wellbeing, Youth & Health Centre of Research Excellence. In the project Co-creating Adolescent Health in the Digital Age, we examined social and cultural understandings of young people’s conceptions of health in Australia, established the WH&Y Commission and co-created a Practice Guidebook to support meaningful engagement with young people in health research and translation.
The project focused on lived experiences of the social and cultural aspects of health and how improved understandings of differential health can address health inequities in the digital age. This also investigated how young people’s visions of health and health services can inform the development of policies, technologies, campaigns and the work of organisations aimed at improving young people’s health outcomes.
What Impact will this research have?
This project will generate the following:
A conceptualisation of accountability grounded in the lived experiences of young people
Youth-Centred Indicators of accountability in health
Practical tools to drive accountability to young people in health research and health care including a replicable framework for adapting to diverse contexts.
Policy Recommendations: compilation of comprehensive policy recommendations to address systemic inequities and foster genuine institutional and systemic accountability.
Outcomes
Young people are involved in the design, delivery and evaluation of health research, policy and services.
Health care is geared to the needs of young people and provides them with the information and care they need, when and where they need it.
Young people feel valued in health research, policy and services and empowered to have their needs met.
Outputs
Check out our work that has informed this project: https://www.westernsydney.edu.au/young-and-resilient/projects/current_projects/WHY
Collaboration team
Internal:
Prof. Philippa Collin
Dr Andrew Kellett
External:
Tasha Ritchie (Accountable Futures Collective)
Research Associates
Jean Lewis
Jae Charlton
Jenon Castro
Carrie McIntyre-Sullivan
Funding
This project is funded by the NHMRC and Sydney Children’s Health Network
Streams
Period
October 2023 - Present
Contact
If you would like to get in contact with the Youth Accountability Project team, please email Dr Andrew Kellett at a.kellett@westernsydney.edu.au or Prof Philippa Collin at p.collin@westernsydney.edu.au.
