People who have experienced stigma and discrimination in health care settings are more likely to distrust digital health services. The report, from UNSW’s Centre for Social Research in Health (CSRH), surveyed more than 2000 people across Australia from April – June 2020, including 600 people classified as members of one or more populations affected by BBVs and STIs.

People with HIV, trans and gender diverse people, sex workers, and gay and bisexual men reported the lowest levels of trust in digital health care services, such as My Health Record, and the most frequent experiences of stigma.

While these groups reported better knowledge of My Health Record than the general population, they were much more likely to report opting out.

“These communities are highly engaged, well informed and notably reluctant to put their trust in some aspects of digital health,” says Associate Professor Christy Newman, one of the lead investigators from CSRH.

“This suggests that an understanding of the potential benefits of digital systems like My Health Record did not overcome the doubts that these communities considered when opting out.

“More meaningful consultation with affected communities and the peer-based organisations that have their trust is required to ensure that communities affected by stigma and discrimination are not left behind when it comes to digital health.”

From Experiences of discrimination drive distrust in digital health | UNSW Newsroom

Panellists

Christy Newman
Associate Professor at the UNSW Centre for Social Research in Health, and Associate Dean (Enterprise, Impact and Engagement) for UNSW Arts and Social Sciences.

Associate Professor Christy Newman conducts qualitative sociological research on health, gender and sexuality at the Centre for Social Research in Health, and is also an Associate Dean (Impact and Engagement) for UNSW Arts, Design and Architecture.

James MacGibbon
Chief Investigator, Postgraduate Research Student UNSW.

James MacGibbon is a social scientist and PhD candidate at CSRH researching health, sexuality and intimate relationships.

Anthony K J Smith
Scientia Doctoral Candidate and Research Assistant at the Centre for Social Research in Health, UNSW Sydney.

Anthony K J Smith is a Scientia PhD Candidate and research assistant at the Centre for Social Research in Health, UNSW Sydney. His research is focussed on social aspects of health, HIV, PrEP, gender, and sexuality.

Key issues

• Our communities experience persistently poorer health outcomes compared with general populations and report pervasive and repeated experiences of stigma and discrimination in health care settings, and in the broader community.
• Many adopt strategies that compartmentalise their health care and related disclosures, seeing different providers for different conditions (e.g. sexual health, mental health, general practice, harm reduction, gender affirming health care) and avoiding the sharing information between services. This fear of sharing and disclosure may fragment their care and lead to poorer health outcomes.
• Trust is a critical issue affecting engagement with digital health systems and technologies in Australia.

 Key resources/programmes

• Trust in Digital Health Survey and Report
• Summary of the COVIDSafe App – Herbert Smith Freehills
• My Health Record Information Brief for Sex Workers – Scarlet Alliance
• My Health Record Factsheet – NAPWHA
• My Health Record Media Release - AIVL
• My Health Record Information Sheet – AFAO, AIVL, Hepatitis Australia, NAPWHA, Scarlet Alliance
• Submission to the Senate Community Affairs Reference Committee on the My Health Records Amendment (Strengthening Privacy) Bill 2018 - LGBTI Health Alliance

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