Digital Health and Data Privacy: What You Need to Know

Let’s talk about data — specifically, your data. When today’s technology was at its infancy and social media profiles were just sprouting, many of us were too caught up with these innovations to genuinely worry about how our data were being collected.

Who should access your data besides you?

Today’s interconnected world means our data is no longer confidential. There are lots of third parties involved, from data researchers to Artificial Intelligence (AI) assistants.

This type of data collection is generally used for the greater good to solve the hardest health industry problems. An example would be Worldwebforum 2020 speaker Dr. Pamela Munster’s work which has been vital in developing early clinical trials for cancer prevention. Meanwhile, we also have Dr. Ioannis Tarnanas, who developed the Altoida Neuro Motor Index — an app that requires user input to detect the risk of Alzheimer’s. All these efforts result in larger data sets researchers can tap into, thus, having the ability to save lives.

Whose data can be collected?

News about high-profile security breaches come out almost every year, heightening public distrust regarding data sharing across all areas. Take the automotive fleet industry, for instance. GPS tracking and automation presents some key benefits for creating safer roads and helping drivers maintain their health, but a recent Verizon Connect report reveals that many drivers are still hesitant to share information for privacy reasons. This reluctance can prove detrimental, as the information can be used to help monitor drivers’ health. In this case, the misconceptions surrounding digital privacy come at the cost of health.

If fleet drivers are reluctant to part with their data, hospital patients are the complete opposite which is understandable as sharing information is necessary to ensure they get the right care. What’s unfortunate is that hackers know this. A comprehensive identity-theft kit containing health insurance records could sell for $1,000 (€894) on the black market in the United States. One of the major issues surrounding data privacy is understanding which institutions to trust.

These are just some examples out of many more, but one thing is for certain, multi-million corporations aren’t the only target. Anyone who has ever shared information online could be the next victim.

How can we regulate the sharing and collection of data?

A study on digital health in Africa shows that public and private sector partnerships are the norm, and that digital health practices are most effective when regulated on both a regional and national level. If we apply these findings to a European context, shared EU regulations add yet another factor to the mix.

With American legislation currently deciding whether to do away with state level regulations, the link between borders and data sharing is looking more porous than ever. Healthcare experts say that this will be the new norm; the benefits gleaned from sharing data outweigh the worries of keeping information out of reach.

The connection between digital health and data privacy is exciting new territory. And as the world of digital health is doing away with existing healthcare structures, it paves the way for rapid innovation.

Worldwebforum recognizes this link as an opportunity to reimagine how the private sector can partner with researchers and institutions from across the world to create more efficient digital health platforms. Experts are looking to reinvent old frameworks in favour of newer and bolder choices, a challenging process that will be discussed at Worldwebforum 2020 in Zurich. An in-depth discussion will also take place in the Digital Health track that will be facilitated by Stefan Biesdorf of McKinsey and Company and Lother Thiele of ETH Zurich.

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by Jiri Berlyn