Should healthcare data live on after a patient dies?

The digitalisation of healthcare has provided huge scope for establishing longitudinal datasets that can be utilised to improve patient care and contribute to advances in medical science.
 
But as the amount and detail of posthumous healthcare data (PHCD) grows in coming decades, there will also be a need to educate the community about how it may be used.
 
A recent small-scale study carried out by the University of Otago and published in The New Zealand Medical Journal found that while there is conditional support for the storage and ongoing use of PHCD, clarification is needed around consent, appropriate infrastructure and governance.
 
In Australia, the Privacy Act 1988 regulates how health services, including general practices, collect and handle personal health information.
 
While it permits the handling of personal health information for medical research purposes where it is impracticable for researchers to obtain individuals’ consent, as is the case with PHCD, two GPs spoken to by newsGP said deidentifying this data is crucial for safeguarding patient privacy.
 
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 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.’
 
The Privacy Commissioner has approved two sets of legally binding guidelines, issued by the National Health and Medical Research Council (NHMRC), that researchers must follow when handling health information for research purposes without individuals’ consent.
 
The guidelines also assist Human Research Ethics Committees (HRECs) in deciding whether to approve research applications. 
 
According to Dr Rob Hosking, Chair of the RACGP Expert Committee – Practice Technology and Management (REC–PTM), while the digitalisation of PHCD changes the way and scale with which it is utilised, it is simply an extension of the way information has always been used to advance medical science and improve patient care.
 
‘We have been using dead people’s data from time immemorial,’ he said.
 
‘That is how we learned what foods were safe to eat. More recently, we have been using death certificates for centuries to analyse trends that determine public health policies. For example, deaths from polio and TB and heart disease.
 
‘I do not see why this data, merely because it is electronic, should be treated any differently.’
 
One likely way PHCD will change in the future is that it will be more common for it to include genomic information. But while this will bring additional benefits to researchers utilising these large data sets, it may also mean that it is no longer possible to deidentify PHCD.
 
A 2017 study explored some of the ethical, legal and technical issues surrounding ‘e-mortality’.
 
‘Anonymous data implies it has been collected and used without any associated personal identifiers, and useful genomic data may never be truly anonymous,’ the report states.
 
‘In addition, with the increase in publicly available databases, large-scale data linkage between healthcare data and personal information also becomes more possible, further decreasing the potential for “true” anonymisation. 
 
‘There is therefore the necessity to differentiate between data being sufficiently anonymous for the purposes of legal and ethical standards, and data being “truly” anonymous in a scientific sense, in order to inform guidelines for utilisation of digital healthcare information.’
 
This is just one of the many reasons strong data governance guidelines are essential, Dr Hosking explained.
 
‘The RACGP has a data governance committee that will shortly release a big statement on how GP data should be managed, whether the patient is living or dead,’ he said
 
‘The various research organisations that use this data already have very strong ethics approval that require good data governance.
 
‘The main issue is that people have concerns when it gets into the wrong hands or it’s used for commercial purposes and that’s something the RACGP is very strong on and keen to try to avoid.’
 
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data ethics patient records posthumous healthcare data privacy