Interconnect health research

Developing co-designed, integrated, person-centred models of care to improve the health of people with innate variations of sex characteristics (intersex variations/differences of sex development)

Velissa Aplin, Simone-lisa Anderson, Y. Gávriel Ansara, Phil Batterham, Adam Bourne, Annette Brömdal, Kate Burry, Alison Calear, Morgan Carpenter, Brian Earp, James Fowler, Vik Fraser, Katie Gabriel, Bridget Haire, Bonnie Hart, Phoebe Hart, Peter Hegarty, Martin Holt, Elissa Jacobs, Aileen Kennedy, Cynthia Kraus, Ashleigh Lin, Michelle McGrath, Julie Mooney-Somers, Paul Byrne-Moroney, Alyssa Morse, Amy Mullens, Christy E. Newman, Ainsley Newson, Prakash Poudel, Katrina Roen, Ingrid Rowlands, Cody Smith, Gwen Smith, Stephen Stathis, Penelope Strauss, Agli Zavros-Orr

The Interconnect Health Research project is being conducted by a national consortium of researchers, community groups and clinicians, led by researchers with lived experiences of innate variations of sex characteristics (IVSCs).

With more than 40 researchers, staff, and advisory members with multidisciplinary expertise involved across Australia and internationally, including ARCSHS director Professor Adam Bourne, Interconnect is working to help create a safer and better future for people with IVSCs, aiming to:

• Transform models of care from narrow biomedical approaches centred on early surgical and endocrinological “management” of IVSCs, to practical multidisciplinary approaches that centre psychosocial support, to address stigma and misconceptions, support families, and help individuals to determine and express their own values and preferences regarding all forms of non-urgent medical treatment.
• Undertake research - led by ARCSHS - that addresses community priorities and expectations, and that is community-based, participatory, and human rights-affirming.
• Improve understanding of the health and well-being needs (including unmet needs) and experiences of adolescents and adults with IVSCs, including those that are hard to reach due to negative experiences of healthcare, and those with intersectional disadvantages.
• Build the capacity and capability of the research community to undertake research and translational work relevant to the health needs of people with innate variations of sex characteristics.

Visit the Interconnect Health Research main project page

Health experiences survey

A major component of the project will be a survey, led by ARCSHS and conducted in partnership with academics and the project team Australia-wide, aiming to gain a comprehensive understanding of the health, wellbeing and health service experiences of adolescents and adults with IVSCs.

This research will seek to understand:

• Their perspectives of their health and wellbeing experiences and needs
• What risk and protective factors are associated with their health and wellbeing outcomes?
• How do health service experiences, preferences and utilisation vary by biographic and psychosocial factors?
• What are the health and wellbeing needs of family members?
• What are the experiences of their family members in accessing health care?

This will be done primarily by:

• Conducting interviews with people with IVSCs and their families to better understand their health and wellbeing needs and experiences.
• Co-designing a new population survey with people with IVSCs to establish a national understanding of the health and wellbeing of people with IVSCs.
• Exploring the acceptability of linking people’s administrative health records to their survey data to examine people’s health service use.
• Developing new methodologies to inform a longitudinal population study

Funding

Interconnect Health Research is funded by the Medical Research Future Fund.