Pew: Americans with chronic diseases are less connected

By Jonah Comstock
Susannah Fox Susannah Fox

Self-tracking is gaining traction, and data-driven wellness companies are thriving, but that trend is still falling short of what people with chronic conditions -- the largest draw on our national healthcare resources -- really need. That was the message hidden among the hype at the Health 2.0 opening sessions in Santa Clara this week, where Susannah Fox from the Pew Internet Project shared some preview data from Pew's upcoming report on people with chronic diseases.

Fox said that while seven in 10 Americans in general self-track, eight in 10 Americans with two or more chronic conditions track their health.

"Tracking data is not a hobby for them," she said. "They may not have a choice. They're trying to use data as a mirror to stay well."

Pew's new data finds that 45 percent of US adults are living with a chronic disease, and that those adults are actually less likely to have internet access or a mobile phone than their healthier counterparts. They are more likely to track using specialized devices like glucometers and more likely to take formal notes, but less likely to use apps or spreadsheets to track.

In addition, Fox said her data shows doctors don't encourage their patients to self-track.

"It seems like clinicians are pursuing a 'don't ask, don't tell' policy," she said. "They don't ask people if they're tracking. They have such a short time with people: do they really want to spend it looking at spreadsheets?" 

Fox also shared older Pew data saying that 70 percent of American adults got information, care or support from a clinician, 60 percent from friends and family, and 24 percent peers with same condition. She suggested that digital tools could help increase the number of patients seeking help from peers.

That's exactly what patients do on online patient community and research platform PatientsLikeMe, whose co-founder Jamie Heywood also spoke in the opening session. PatientsLikeMe has been using its large patient community and its reporting tools to conduct large scale studies. Heywood talked frankly about how those studies were scientifically valuable, but not economically profitable, which is partly why they hadn't been undertaken before.

"You have to validate it according to the system's rules, and the validation system is stacked to support the current behavior. So you have to make people who do what you do now think that your new way, which will take their business away, is better. And they're the only ones who get to decide," he said.

For instance, one PatientsLikeMe study showed that sodium chloride was actually making ALS patients worse. But because the study was a negative one, he said, it would never have been completed in the existing system. In another study, this one not yet published, PatientsLikeMe found that chronic disease patients were nine times as likely to have insomnia than those without chronic diseases. Again, he said, the study could help people, but isn't seen as valuable today because it doesn't support a product that can be sold.

Heywood and Fox both identified some potential holes in the current healthcare innovation landscape -- Heywood pointing out research gaps created by the market and Fox's data showing a key group underserved by tracking technology. But both offered their perspectives as opportunities as well as challenges.

"We're in the business of delivering stratification and signal optimization. We don't know what health is. We don't know what healthcare is. We don't know what it means to be healthy," said Heywood. "...Over the next year you're going to see us roll out how we connect to everyone else in this system, and that's the next step."

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