What should happen to healthcare data when we die?

When you pass away, what happens to your medical data? Depending on the country you live in, or even the state, your data might be passed onto your family, used by the government or companies, or buried forever. As digital healthcare records are increasingly becoming the “norm”, there are many benefits but also ethical dilemmas that have arisen.

A long-term study explored Aotaearoa New Zealanders’ perspectives on the use of Posthumous electronic healthcare data (PHCD), carried out by a team at the University of Otago. A focus group of 67 people were asked questions about general versus family access, anonymity, commercialisation of the data, consent processes, data governance and the scope of data use.

The study is published in The New Zealand Medical Journal.

In general participants indicated conditional support for a centralised, Government-managed PHCD repository. Public benefit from the data was most important to the participants, where this repository could be accesses at no-cost for healthcare and research purposes. Participants also preferred benefits to be prioritised directly to their families, then Aotearoa New Zealanders, then the rest of the world.

“What was fascinating is that, by and large, most people were happy to leave a medical record resource that could be of direct benefit to their descendants, the general New Zealand population, and to humanity,” says Dr Jon Cornwall, Senior Lecturer in Health Sciences, and board member of the Federative International Committee for Ethics in the Medical Humanities.

“I think it’s really important… So, it needs to be at the forefront of people’s mind about what is actually going to happen to this information when you do pass. And with research and development being so important, especially for our country, it is very crucial that we do actually have some parameters around the laws for how people are going to use this information. So, definitely a worthwhile topic to be discussing,” one participant said in the study.

Culturally, Māori PHCD was considered preferred to be managed by Māori.

“There were also opinions acquired from Maori participants, the indigenous people of New Zealand, and comments from this groups suggest that their data should be treated somewhat differently from that from European New Zealanders. This highlights how indigenous interests and potential data sovereignty will need consideration as medical data management of this kind is developed,” says Cornwall.

A participant responded “I think it’s important. I’m Māori and I, death is very important in our culture. And lots of mahi in your body, and you’re not meant to be burned and things like that. So, I’m very interested in this [subject], personally.”

Surprisingly, commercialisation was viewed as likely to occur, but also acceptable. Participants did struggle to define appropriate levels of family access, anonymity, and consent models, as depending on the situation, the divulging of data could have positive or negative outcomes.

“I can see a scenario where an insurance company might just grab hold of it and then use it to basically tighten up, make things restrictive for people who had certain conditions and would create societal inequities,” said another participant.

“People were comfortable with the fact that users of the information, like pharmaceutical companies, would profit out of data use, with an example of this being the development of a new drug from use of such a data resource. What they did not want was ‘blatant exploitation’, or to feel like they were being taken advantage of, and from this position they also suggested that ‘selling’ the data to companies was not right – it should be a free resource,” says Cornwall.

The information provides the first empirical evidence of social support for posthumous healthcare data use and guides a potential future for healthcare data use in Aotearoa New Zealand.

In many countries, including the USA, UK and Australia, PHCD is passed onto the government for storage and use, and access to the records can be made upon written request. Reasons for accessing the PHCD data include a serious threat to an individual or the public’s safety (such as a virus), genetic information that could save a life (like inheritable diseases), or information sought for compassionate reasons.

“I don’t care [where data is stored], as long as it’s not accessible by Donald Trump,” one very wise participant remarked.