I was interviewed and quoted in the article, “Should healthcare data live on after a patient dies?”, written by Mr Tim Robertson, published in newsGP.

Robertson T. Should healthcare data live on after a patient dies? 2022 May 26. Available from: https://www1.racgp.org.au/newsgp/clinical/should-healthcare-data-live-on-after-a-patient-die

Quotation

Dr Michael Tam, member of the RACGP National Research and Evaluation Ethics Committee, also raised the motives of those utilising the data as an important consideration, as using PHCD [posthumous healthcare data] for commercial purposes or allowing insurance companies to have access would be unethical and potentially undermine the community’s trust in GPs and other custodians.

He likens the use of PHCD to a social contract.

‘Some of the values that must underlie the use of the data are altruism and ensuring it is being used for the public good,’ Dr Tam told newsGP.

‘That means that it cannot be used in a way that is harmful to the people the information relates to, their descendants or the community at large.

‘I think a lot of community members and patients would be willing for their [healthcare] information to be shared and used for the purposes of the research. I think one of the strong underlying drivers would be people saying, “I am willing to give this information about myself on the basis that it is used altruistically – that it is used for good”.

‘If there is a sense that the researchers or custodians are not respecting that altruism, then it no longer becomes okay.’