Want my digital health data? Convince me.

Author: Mona Sobhani, PhD

On the spectrum of personal data privacy, you’ll find me nestled far closer to the side of “none of my data is anyone’s damned business”.  Maybe I’ve been radicalized, having read one too many articles on the nefarious uses of personal data by governments and corporations.  Indeed, one look at my Netflix list would reveal my paranoid leanings.  Maybe I’m too skeptical, but news stories like the recent Facebook-Cambridge Analytica scandal don’t do much to relieve my concerns. 

So when I think about the topic of digital health, which aims to use emerging digital technologies and advanced analytic methods to forge progress on healthcare, I can’t help but react defensively. I find myself wondering why it’s not enough that you have my location, social, and purchasing personal information.  Now you want my health information, too?

But digital health needs our data and I was reminded why after attending a meeting last week.  The ultimate promise of digital health, as I see it, is to help solve personalized health.  What I mean by solving personalized health is that we want to move from a “sick care” system to a “health care” system where health problems are identified and treated early, or even prevented, on a personalized basis. The “X” factor needed to do that with unprecedented and exceptional efficiency is to have a lot of data from humans in various states of health on which to train algorithms.  Without that, digital health solutions may make healthcare more efficient by, say, improving communication between stakeholders and making it easier to give/get a prescription – but it won’t solve health.

However, that idea does not make it any safer to provide personal data.  The risks of cyber breach are still very real, and the average patient may not fully understand what those risks are.  To help patients make more informed decisions, it should be the responsibility of digital health solution providers to provide examples of risks, as well as explanations of how they intend to mitigate risks.

Realistically, it may take a long time to get to the point where the combination of the digital health wearable sensors and apps I’m using will be able to detect things like reduced immune functioning.  Take genomics as an example.  We have decoded the human genome, but we are not close to having every gene-to-gene-environment interaction mapped out, because research and development take time. This should be communicated to patients so they do not feel duped.

It should be the responsibility of digital health stakeholders to convince me to provide my data by using their product.  They can do that by properly communicating the issue of why they need my data, what are the possible harmful outcomes, and why it may take a while to see results. This way,  every patient will not feel as though digital health is another ruse for private companies to acquire my personal data for their personal profit.  And digital health can march forward to its goal of solving health.