Intersex Awareness Day is on 26 October – a day dedicated to celebrating, recognising and learning more about people with innate variations of sex characteristics (intersex).
To mark this occasion, the Interconnect Research Team was delighted to host a webinar to share more about the project, what it’s seeking to achieve, and why improving the health and wellbeing of people with innate variations of sex characteristics is such a pressing matter.
Lived experience lead Dr Ingrid Rowlands hosted the event, with fellow lived experience leads Associate Professor Morgan Carpenter and Bonnie Hart and Chief Investigators Professor Ashleigh Lin, Velissa Aplin, and Associate Professor Bridget Haire contributing to discussions. The event received 84 registrations, with 52 people attending for the Webinar.
A recording of the event is available below, and we welcome any follow up questions via the Interconnect ‘contact us’ form.
Key takeaways from webinar discussions
Discussions focused on the population, including experiences and key health and wellbeing challenges, and how the Interconnect project is seeking to contribute to addressing these aspects through workstreams centring around the importance of psychosocial support in community and clinical settings, health surveys to establish and test prevalence of the population’s experiences, and the creation of a new bioethical framework to inform better models of care for the population. Key takeaways included:
- Psychosocial care: Psychosocial care is essential for people with innate variations of sex characteristics to help make sense of new medical information upon receiving a diagnoses, and to help foster connection and community with people who share similar experiences. Interconnect’s psychosocial support work stream is seeking to assess the efficacy and implementation of peer support services for people with innate variations of sex characteristics in clinical and community settings.
- Good data: We don’t have enough good research data collected about this population. Interconnect’s health surveys research stream will help to change this by: 1) collecting deep and rich qualitative data through interviews with people with diverse experiences and diagnoses; 2) conducting a national survey on the health experiences of the population, with questions co-designed with people with lived experience; and 3) facilitating opt-in data linkages to link survey responses with health data of individuals with innate variations of sex characteristics.
- Co-designed bioethical frameworks: Current Australian bioethical frameworks were developed with select clinical input only, and did seek input from people with lived experiences or with human rights experts. Interconnect’s new bioethical frameworks stream is seeking to co-design a new, representative bioethical framework that can inform new and better models of care for people with innate variations of sex characteristics.
- How to get involved: There are opportunities for eligible people to contribute to Interconnect’s research program, including participating in the national survey, expressing interest in participating in a qualitative interview, and shortly in participating in a survey that will inform the development of a new bioethical framework. More information, including current and future opportunities, are available on Interconnect’s ‘participant in research’ webpage.