The Loneliness of the Sick Self-Tracker

This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email.

Shaquille O'Neal towered on a main stage in the Austin Convention Center, chatting about wearable technology amid the uber-hip throng at the South by Southwest Festival (SXSW) in Austin.

The topic of wearables, those shiny new things made of plastic, rubber and metal that track our activity and health metrics, is big news. During the 2013 holiday shopping season, both health and lifestyle magazines featured recommendations for gifting mom and grandpa with activity trackers. Even Consumer Reports' September 2013 issue offered ratings for popular wearables, signalling consumer health-tech is going mainstream.

SXSW featured over a dozen panel sessions where health experts, developers and venture capitalists discussed this bullish market. At the 2014 Consumer Electronics Show in January 2014, the digital health category grew 40 percent over last year's exhibitor list, when digital health had grown 25 percent over the year before.

We are now in what Gartner, the industry analysts, calls the top of The Hype Cycle for wearables.

If you're healthy and tracking steps, calorie burn, and heart function, you can slap on a wristband, throw a pendant around your neck, or toss a digital amulet into your pocket and go about your day. You can then checking in with your mobile phone app or see a cute icon on your device that graphically displays your progress through the day. If you want to self-track as a team sport, you can share your data on RunKeeper's Health Graph, one of several applications running through the internet cloud that enables personal information to move from one's device to a database that aggregates your data to a group of peers also measuring the same stuff. You can benchmark yourself, compete with others, and go social with your data. This can be useful for bolstering behavior change like losing weight, sticking with exercise routines, and scoring wellness benefits in workgroups. And you can even score loyalty points with Walgreens by linking a BodyMedia, Fitbit, or Withings scale to the portal.

If you're un-well, though, and managing a chronic condition, self-tracking can be a lonely sport.

With all the buzz about wearables and digital health at CES and SXSW, there's lots of data being generated, but not so much coming out about how we make sense out of the many bits and pieces of user-generated data that can help people manage health.

Creating a sensor-laden device for "health" is the easy part; making sense out of sensor data is much, much harder to do.

That's because we have silos of health "care" data that can't yet marry to consumer-generated "health" data coming out of Fitbit, Nike+, Jawbone, and other devices we buy in retail stores. That's the B2C (business-to-consumer) retail world.

From a technology business standpoint, the health "care" data falls into the industry domain of HIMSS, the Health Information and Management Systems Society, whose members are historically hospitals and health providers. The recent focus for this group and annual conference has largely been electronic health records, owing to the financial incentives bundled into the HITECH Act (part of the ARRA Stimulus Bill of 2009) motivating the adoption of EHRs which are moving our paper medical files into digital formats. We are mid-stage in this adoption process, with doctors implementing these systems and learning to "meaningfully use" them.

For the sick person wanting to integrate what their doctor knows (from intermittent visits) and what we know (on a daily basis through our self-trackers), it's a solo sport because our consumer-generated data (from the retail, B2C world) can't yet cross the data chasm and move through the internet cloud into our doctors' EHRs. Yet for someone who wants to most effectively manage diabetes, gut conditions like Crohn's Disease or irritable bowel syndrome, and other conditions where daily living choices directly impact our health outcomes, we're stymied.

In the current health insurance marketplace, we're charged by health insurance to be "health consumers" -- to pay more of the health bill up front through high-deductible health plans and health savings accounts. If we obtain health insurance through work, we're also invited to participate in employer wellness programs through work-based health plans.

Yet the key tool that can empower and enlighten us -- access to a complete picture of our health status through our numbers, our health data -- is elusive.

In 2014, the go-go worlds of the Consumer Electronics Show and South-by in retail health are quite separate from the health care industry's IT world of HIMSS. But these worlds are blurring: physicians and health plan representatives participated in panels at SXSW this week. At HIMSS, the consumer and "connected patient" played a role on the exhibitor floor, next door to big data analytics players.

Furthermore, HIMSS announced its launch of the Personal Connected Health Alliance, partnering with the Continua Health Alliance whose focus is untethered, wireless health care. This is an enabler of health care, everywhere, and especially to the home -- where people live, every day.

This is a good thing for the lonely self-tracking patient. In addition to breaking down the data silos, we must reach across industry barriers (B2B and B2C) and stakeholders (providers, life sciences, pharmacy, home care) to become the health ecosystem that serves the consumer, patient and caregiver. It's time for health-tech developers to get informed by this end-user consumer, who can inform initial ideation and design with the needs and values of the real person. That's called consumer-centered design, and it's the key ingredient in the prescription to solve the loneliness of the sick self-tracker.