A fascinating article by Jenna Worthammarch in the NY Times
“The researchers found the data collected via Clue to be more detailed — and more accurate. “The data is as close to real time as we can get,” McDonald said”
For actual real time data we need to start embedding mobile into the medical devices that Patients are already using.
“They hope their young participants will be more comfortable telling a faceless app about personal health matters — a slump of depression, gross blood clots, irritated bowels — than telling a doctor. And it’s not just teenagers; most of us are willing to be much more honest with our phones than with professionals, or even with our spouses and partners. We look up weird symptoms and humiliating questions on Google with the same ease that we search for the name of a vaguely familiar character actor. For many of us, our smartphones have become extensions of our brains — we outsource essential cognitive functions, like memory, to them, which means they soak up much more information than we realize. When we hand over this information willingly, the effect is even greater”
This is something I learnt some years ago from super smart medics like Dr Richard Sills and Prof John Bachman MD who helped fuel my interest in studying the history of computerised medical history taking technology.
Letting Patients/Carers help with the documentation of Healthcare is really important but it’s equally important that we don’t overlook the value there is in of the increased willingness we have to share sensitive personal information when the interview can be done without time constraints or the human factors in the conventional Doctor office consult that can present challenges.
“Both scientists say that the app has opened up endless possibilities for their research, because it offers a way to rethink — and potentially overhaul — how women’s health is studied. “We think we know about menarche, because we’ve been looking at it for decades,” Houghton said. “But there’s still so much to study.” Clue can collect more than just period start dates. It can also gather data on things like bleeding and pain patterns, energy levels and sexual activity, allowing researchers to put old wives’ tales to the test of scientific rigor”
I think this is why wearables are so exciting (eg. check out my take aways from Europe’s biggest Wearable Tech Show that was held in London last week). When your mobile knows that you’re pregnant or have had an abortion and is sharing this information with uncertain third parties isn’t it clear we all need to get more clarity of how our data is being used/sold and that the Clinical Trial industry needs to learn from what’s going on and go Mobile First.
“It wasn’t until a friend introduced me to period-tracking apps in my 20s that my body became something I understood intimately, that it was more familiar than foreign. Initially, I was skeptical, but the apps were password-protected, which made me feel comfortable being honest about what I was actually feeling and with whom I was actually sleeping. After a few months, the apps weren’t just a repository of daily facts; they had become a legible map to my body. My period no longer caught me off guard, and I eventually learned to connect the arc of my cycle to changes in mood, appetite, fatigue and sex life, and adjust my routines accordingly. By now, I have years of data about my periods and an extremely accurate understanding of how my body works: when I’m likely to experience cramps and breast pain, when to skip yoga and social outings because I’ll need more sleep. All my life, my doctors tended to be vague, making my bodily functions seem ultramysterious, when in fact they are just individualized, and easily understood with the assistance of software”
Compare this to the nonsensical situation we tolerate in world leading teaching Hospitals where highly paid Endocrinologists fan their faces with the unreliable paper diaries of Diabetics before informing them that they are going to lose their foot (something that can be prevented when we make diabetes management less mysterious)…
“By divulging every last detail to these apps, we make them incredibly valuable — but also potentially ruinous, if our most sensitive records were to fall into the wrong hands. Clue repeatedly talked up its airtight security, and I currently believe the company about that, just as I once believed eBay’s, Snapchat’s and Evernote’s claims that their services were safe. And yet each was hacked, eventually. These days, breaches are inevitable, which presents an impossible dilemma. The only conclusion I’ve come to is that we have to evaluate each new relationship to hardware and software individually and assess the trade-offs. Clue has this on the “pro” side of the ledger: McDonald, Houghton and Tin all believe Clue will settle the debate over McClintock’s research”
This is why I think the healthcare industry really needs to show it’s support for Apple’s fight with the FBI to maintain strong encryption levels for smartphones.