Support for using health data from the deceased
BEING dead does not mean you are of no use to the living.
Otago Medical School Centre for Early Learning Medicine senior lecturer Dr Jon Cornwall has been researching possible uses for posthumous electronic healthcare data (PHCD) for almost five years, and his latest research shows Kiwis are supportive of their data being used after they die — as long as it helps others.
Dr Cornwall said there were many ways this data could be used, including utilisation of genomic data to process and develop personalised medicine.
‘‘That will directly benefit family in certain circumstances, as well as the wider community.’’
He said society had entered an era where having digital information recorded about us was considered normal.
Yet, despite its increasing volume, no decisions had been made about what should happen to that data after someone died, and there was no guide as to what society viewed as acceptable.
Dr Cornwall’s study aimed to fill that gap by exploring the attitudes and perceptions of New Zealanders towards the use of the deceased’s healthcare data.
The results showed there was conditional support for a centralised, governmentmanaged PHCD repository, allowing controlled, nocost access for healthcare and research purposes.
He said public benefit from the data was important, and participants prioritised any benefits being directed to family, then New Zealanders, and then others.
Commercialisation from datause was viewed as ‘‘likely’’ and ‘‘acceptable’’, and Maori PHCD was considered preferably managed by Maori.
However, participants struggled to define appropriate levels of family access, anonymity, and consent models.
Dr Cornwall was not surprised by the results.
‘‘The Kiwi attitude of helping others came through strongly — we are a beneficent bunch.’’
He said the insights would help shape how PHCD should be used in a socially responsible manner.
‘‘Death is an important social construct and deciding how to respectfully address information from those that have died had not yet been discussed.
‘‘This is particularly important when medical information, which has personal and societal value, is being utilised.’’