Watch out world - Elizabeth to the power of two!
Yesterday, I had the privilege of sitting alongside Elizabeth Koff and others on an expert panel at the Health Informatics Conference in Brisbane. Our focus was Who Owns Patient Data? Despite being on the afternoon of Day Three, the room was packed and the conversation was electric, reflecting the diverse opinions and strong interest in this critical issue. The perspectives shared were both thought-provoking and insightful. I valued the expert contributions of all panel members - Danielle Bancroft, Peter Leonard, James Manners, Dan Stinton.
The session was brilliantly facilitated by the MSIA's Emma Hossack. Representing the views of Australian health consumers, I drew upon research conducted by CHF and highlighted key insights:
💽 Health consumers are deeply concerned about not just who might own health data but also about how data is used. Australians demand more transparency and accountability in health data use.
👩👩👦👦 The views of health consumers are diverse and far from homogeneous. Opinions on data sharing and usage vary significantly. It’s crucial that any work in this area involves a broad and inclusive group of consumers to ensure that solutions are representative.
❌ All data is not equal. Many health consumers make clear distinctions between types of data, viewing sensitive information, like sexual health data, very differently from less sensitive data, such as notes about a recent episode of tinea. This distinction must be respected in consent processes and data sharing.
📣 There’s an urgent need for a national conversation about the role of technology in reshaping society. Digital literacy is needed in bucket loads, everywhere and at once. Everyone must better understand how their data is used, shared, or not shared, right now.
During the discussion, we touched upon several other key questions:
❓ The legal nuances of data custodianship and what it means in the patient-doctor relationship
❓ The ethical, clinical and social implications of sharing sensitive health information
❓ The practicality and challenges of consent in data sharing
❓ Balancing economic, commercial, ethical, and public interests in the data-sharing space
The session was a testament to the critical importance of these discussions and the pressing need for ongoing dialogue and reform. It’s crucial that we better consider the legal, social, and ethical dimensions of health data use and strive to find the right balance that respects consumer rights while enabling effective healthcare delivery.
Thank you to all who attended and contributed to this enriching conversation, with a special shout out to Pip Brennan. Together, we can shape a future where health data is managed responsibly and ethically, for the benefit of all.
Consumers Health Forum of Australia (CHF) Telstra Health #HIC2024 #AIDH #DigitalHealth Croakey Health Media