In their new book, Digital Health: Understanding the Benefit-Risk Patient-Provider Framework, Eric Perakslis and Martin Stanley define digital health and discuss its potential to improve patient care in the face of emerging risks, drawing on their combined expertise in data science, cybersecurity, and decades of hospital, policy, and federal regulatory experience.
Perakslis is Chief Science Officer at the Duke Clinical Research Institute as well as a member of the KCA’s Board of Directors. He was diagnosed with kidney cancer in 2005. We spoke with him about what patients and doctors need to know about digital health.
How do you define digital health?
In the book, we define digital health as the intersection of healthcare and the internet. As somebody who was working in hospitals 35 years ago, I can say a lot of the tools we have today aren’t new, but they’re connected to the Internet and that’s a big difference.
If you think about it as a cybersecurity professional, there are:
Healthcare has no excuse for not managing the known knowns. There are ways to calculate risk and we should have the right amount of humility when we bring new technologies into healthcare.
Who are the gatekeepers of digital health?
One of the points of this book is that there aren’t any gatekeepers, for the most part. In some ways, that’s good because it’s an open and growing field. In a lot of ways, that’s bad because there’s everything from well-intentioned Charlatanism to people who know what they’re doing is harmful, like antivaxxers. And there isn’t a regulatory agency in the US that’s tasked fully with digital health.
We try to give an assessment of the pros and the cons, the benefits and the risks for patients and their providers. If you’re a doctor and you think something might be helpful but you’re not sure about it, what should you be thinking about before you recommend to a patient? What could go wrong? We [wrote this book] because if people are smarter, they’ll be more comfortable making those decisions.
Is it possible to for someone to have control over their digital health footprint?
I think there is. People can choose to be more private and engage in fewer things.
But depending on the level of illness you have, that might be where you don’t have the choice. It’s like, if you have a headache, you take Tylenol. You don’t take platinum chemotherapy, which makes you throw up and your hair fall out. But you do take if you have cancer because cancer might kill you.
And that’s more of the problem – [your footprint] depends on the amount of times you’re in the system. Cancer patients are not just frequently involved [in healthcare]; cancer care tends to be spread out. Your medical oncologist is in this office building, you get your scans and MRIs done, your surgery is at another hospital, chemotherapy at an infusion center, and all your meds are going to your local pharmacy. For the most part, those institutions are supposed to protect that information and the choice to the user is how much information they add to that.
How can a someone newly diagnosed with cancer, on top of dealing with a lot of new and scary information, navigate the risks and benefits of the digital health ecosystem?
I’m a huge fan of the book Being Mortal by Atul Gawande. What he talks about is that healthcare conversations should really quickly get to what’s important to a person – what are your goals?
For me, when I had my first renal cancer stage III and I had a partial nephrectomy, this was 2005, there were no TKIs [tyrosine kinase inhibitors], and it was surgery or death, basically. I was a data scientist, I looked at my stats – they were all horrible. I had blinding migraines from painkillers. My daughter was 3 years old and I had about a 1/3 chance to see her reach her 8th birthday. So, I just started getting up off the couch and walking. And then I got on the treadmill. And then I got a first-generation Garmin [GPS device] and I started running. For me it was the activity that took my mind off it and the endorphin rush kind of became my analgesic.
What we have to think about with patients is what’s important to them in their journey? And are there tools that will help us? Like there are for nutrition, activity, and sleep. There’s a ton of this stuff out there and there’s so many clinicians now that are experimenting. That’s kind of why we wrote the book – doctors aren’t talking about cybersecurity or physical security.
What does the future look like for people who need care and have to engage with healthcare data systems?
For me, the future of care is more remote, more telehealth – we’ve seen that with Covid.
I think that people should prioritize what’s important and necessary to them. I’m hoping [care gets] less burdensome. For example, if we’re doing clinical trials where they’re worried about cardiovascular toxicity, if we put an Apple watch on them and run it full time between visits, visits could be every 6 months instead of every 3 months. Or a parking app that allows a person to reserve a space and let the grandmother out right there. Will more people complete clinical trials if we make it easier?
I hope we see beauty in the simple, practical things and just make them happen. The intent with the book is to arm people with information and knowledge that they probably didn’t get in their formal career paths about this brave new world. But we also say, don’t make the mistakes of the known knowns.
This interview was edited for length and clarity.