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GPs hold vast amounts of posthumous health data which is extremely useful, but its use raises important ethical considerations.

It will likely be more common in the future for posthumous health data to include genomic information.


The digitization of healthcare has provided a wide scope for establishing longitudinal datasets that can be used to improve patient care and contribute to advances in medical science.


But as the amount and detail of posthumous healthcare data (PHCD) increases in the coming decades, there will also be a need to educate the community about how it can be used.


A recent small-scale study conducted by the University of Otago and published in The New Zealand Medical Journal found that while there is conditional support for the storage and continued use of the PHCD, clarification is needed regarding consent, appropriate infrastructure, and governance.


In Australia, the Privacy Act 1988 regulates how health services, including general practices, collect and handle personal health information.


Although it allows the processing of personal health information for medical research purposes where it is impossible for researchers to obtain the consent of individuals, as is the case with the PHCD, two general practitioners have maintained with newsGP said de-identifying this data is crucial to protecting patient privacy.


Dr. Michael Tam, a member of the RACGP National Research and Evaluation Ethics Committee, also raised the motivations of those using the data as an important consideration, as using PHCD for commercial purposes or allowing companies insurance to have access would be unethical and could harm the community. confidence in general practitioners and other trustees.


He compares the use of the PHCD to a social contract.


“Some of the values ​​that should underpin the use of data are altruism and ensuring it is used for the public good,” Dr Tam said. newsGP.


“This means that it cannot be used in a way that is detrimental to the people affected by the information, their descendants or the community as a whole.”


“I think a lot of community members and patients would be ready for their [healthcare] information to share and use for research purposes. I think one of the main underlying drivers would be people saying, “I’m willing to give out this information about myself on the basis that it’s being used altruistically – it’s being used for good. “.


“If there’s a sense that the seekers or custodians aren’t respecting that selflessness, then it’s gone.”


The Privacy Commissioner has approved two sets of legally binding guidelines, issued by the National Council for Health and Medical Research (NHMRC), which researchers must follow when handling health information for research purposes without the consent of individuals.


The guidelines also help human research ethics committees (HRECs) decide whether or not to approve research applications.


According to Dr. Rob Hosking, Chair of the RACGP Expert Committee – Practice Technology and Management (REC-PTM), if digitization of the PHCD is changing the way and scale with which it is used, 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 data from deceased people since time immemorial,” he said.


“That’s how we learned which foods were safe to eat. More recently, we have used death certificates for centuries to analyze the trends that drive public health policy. For example, deaths from poliomyelitis, tuberculosis and heart disease.


“I don’t see why this data, just because it’s electronic, should be treated any differently.”


One likely way the 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 using these large datasets, it may also mean that it is no longer possible to anonymize the PHCD.


A 2017 study explored some of the ethical, legal and technical issues surrounding “e-mortality”.


“Anonymous data implies that it was collected and used without any associated personal identifier, and useful genomic data may never be truly anonymous,” the report states.


“Furthermore, with the increase in publicly available databases, large-scale data matching between health data and personal information is also becoming more possible, further reducing the potential for ‘true’ anonymization.


“There is therefore a need to distinguish between data that is sufficiently anonymous for the purposes of legal and ethical standards and data that is ‘truly’ anonymous in a scientific sense, in order to inform guidelines for the use of digital health information.”


This is just one of the many reasons why strong data governance guidelines are essential, Dr Hosking explained.


“The RACGP has a data governance committee that will soon issue a big statement on how GP data should be managed whether the patient is alive or dead,” he said.


“The various research organizations that use this data already have very strong ethical approval which requires good data governance.


“The main issue is that people worry when it gets into the wrong hands or is used for commercial purposes and that’s something the RACGP is very strong on and keen to try to avoid. “



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