Work Package 2, this stream, aims to gain a comprehensive understanding of the health, wellbeing and health service experiences of adolescents and adults with IVSCs. Research in this stream 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; and what are the experiences of their family members in accessing health care?
We will do this primarily via the following means:
- 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
Research team
Natalie Amos
Adam Bourne
Kate Burry
Morgan Carpenter
Bridget Haire
Bonnie Hart
Jordan Hinton
Martin Holt
Ashleigh Lin
Julie Mooney-Somers
Christy E. Newman
Ingrid Rowlands
Penelope Strauss
Latest health experiences news
Seeking a Postdoctoral Research Associate to join Interconnect’s ‘new bioethical frameworks’ stream
Are you passionate about improving the health and wellbeing of people with innate variations of sex characteristics? Do you have experience with Delphi methodology and a background in health, health law, bioethics, social sciences, or a related field? Interconnect Health Research is seeking a Postdoctoral Research Associate via consortium partner University of Technology Sydney…
Podcast: Interconnect researchers on The I in Us program
On 31 July, Interconnect researchers Associate Professor Bridget Haire, Dr Kate Burry and Professor Adam Bourne joined ‘The I in Us‘ radio show to discuss the Interconnect research program and upcoming opportunities for the community to get involved. Listen to the program podcast here Hosted by Interconnect Community Reference Group members Paul Byrne-Moroney and Cody Smith, The I in Us is the only…
UN report on discrimination, violence and harmful practices against intersex persons
Publication of groundbreaking report The UN Office of the High Commissioner for Human Rights (OHCHR) has published a report on discriminatory laws and policies, acts of violence and harmful practices against intersex persons. The full report is available in all UN languages (Arabic, Chinese, English, French, Russian and Spanish), and will soon be accompanied by…
Participate in qualitative research on health, well-being and experiences
Do you have lived experience of an innate variation of sex characteristics? You might have a variation yourself, or you might be a parent or carer. We know that different people have different preferences for language. You might use other language to describe your trait, including a specific diagnostic term or the terms “intersex variation”,…
Interconnect researchers to join ‘The I in Us’ radio show on 31 July
On 31 July from 6-7pm AEST, Interconnect researchers Associate Professor Bridget Haire, Dr Kate Burry and Professor Adam Bourne will join ‘The I in Us‘ radio show to discuss upcoming opportunities for people with innate variations of sex characteristics to participate in qualitative interviews and a national survey about their experiences of healthcare and wellbeing. You can listen live on…
Launch of InterLink resources hub
On 21 May 2025, the InterLink website relaunched as a new information hub providing depathologised, trauma-informed resources on physical, mental and sexual health, patient rights and sexual violence prevention for people with innate variations of sex characteristics (IVSC), also known as intersex variations and differences of sex development. It contains resources on diagnosis-specific innate variations,…

