At a Joep Lange Institute debate in Amsterdam in September 2017, four leading experts discussed the inherent tension between data’s potential to improve healthcare and people’s privacy concerns.
What are the main issues to be addressed? Can ‘big data’ create better healthcare around the world? And how much privacy are we prepared to sacrifice?
Jerome Singh (Head of Ethics and Law at the Centre for the AIDS Programme of Research in South Africa), Dianda Veldman (Director of the Patient Federation Holland), Francois Venter (Deputy Executive Director of the Wits Reproductive Health and HIV Institute at the University of the Witwatersrand), and Professor Roel Coutinho (Department of Epidemiology, UMC Utrecht) outlined the big issues facing governments, healthcare professionals and patients as our capacity to process big data continues to expand.
“It’s a matter of having access. Patients should have access to their own data in the palm of their hand” says Veldman.“It’s a matter of having access. Patients should have access to their own data in the palm of their hand.”
For Singh, there are subtleties to consider. He says: “There’s a difference between ownership, possession and custodianship. You may be a possessor of data but not own it, or a custodian but with no rights to control or manage the data.”
Ultimately, he believes, the intent behind data access is crucial, and the ethical considerations that need to be addressed will depend on the intended use of the data.
“If you want the information for commercial purposes, it’s a very different outcome than if you want it for public health purposes. There’s no one rule; it all depends on the context,” he says.
Singh insists that governance and jurisdiction are two important – and often overlooked – aspects to the debate. He says people need to have the reassurance of knowing that if something goes wrong, they will have an opportunity to redress the situation through credible channels: “If there’s a misuse or violation, how does somebody get justice in that situation?”
For example, Facebook can’t take data gathered in the EU and commercially exploit it in the United States. But if they tried to, Singh says that people need to know there is strong governance in place and a judicial process with the power to prevent it.
Does an abundance of data and information have negative consequences? Does it heighten patient anxieties and make them feel nervous? Yes, it’s possible, according to our panellists.
“It’s a very exciting time to think about whether we can put information in patients’ hands to make personalised decisions about their healthcare,” says Venter. But at the same time, it’s not hard to see how having ready access to detailed information about their personal health could be a source of added worry or stress for some people.“It’s a very exciting time to think about whether we can put information in patients’ hands to make personalised decisions about their healthcare.”
“It’s also about the right not to know,” says Venter. “We’ve got to work on awareness and ensure that people decide whether they want to know or not [about potential health consequences data could reveal]. Patients need to be well informed; that’s very important.”
The quality of the data
To provide genuine value, data collection must be focused and deliberate, says Coutinho. “Big data can be very helpful, but the question is how good is the data and why do you want to collect it?” He cites health apps as an example – what happens to the data that is collected by these apps?
It is a point also stressed by Venter. The point, he says, is not to just collect as much data as you can. But to target only the specific dataset you need, and ensure the data is reliable.
“You have to look at what data you’re collecting, and why. If you talk to researchers, they want to collect 50,000 different bits of data. You need to be very careful about what you do, and then collect it very well,” he says.
Trust and consent
Would you be comfortable with the state being able to access your personal data? Or feel at ease if insurance companies could view the same information? Trust is a key issue for data in healthcare.
Veldman says: “There’s a difference between individual data and big data to help society. From an individual level, it’s important the individual can decide who can see their data. On the other hand, when you give your data for research, it’s very important that you cannot be recognised. One of the dangers in big data is that many data sets can be combined and someone who thought they were anonymous is suddenly not.”
Singh adds: “It all boils down to disclosure and giving consent where applicable.”