What’s the Big Deal about Data?

In recent years, there has been a lot of progress in devices and apps for managing diabetes. The race to enhance wearable technology and devices is happening at a rapid pace, and will benefit patients and healthcare providers alike with the ability to integrate data and share it more easily. According to Dr. David Agus, whose book The Lucky Years describes how data will revolutionize healthcare, the information we can gather from devices tells a larger story because it can put singular incidents into context. More data means less room for error in developing individualized care.

Still, the amount of data can be overwhelming, and keeping up with the news and the latest devices is a challenge for patients, providers and caregivers alike. On the other hand, that information tells a larger story, putting singular incidents in context, and in his book on how data will revolutionize healthcare, Dr. David Agus argues that more data means less room for error in developing individualized care.

At last summer’s American Association of Diabetes Educators conference (AADE) in New Orleans, keynote speaker Susanna Fox, Chief Technology Officer at the US Dept. of Health and Human Services, explored the use of technology in healthcare, and many of the conference sessions related to this topic as well. Simply keeping up with technology and the news is a challenge.

Ms. Fox is well-known by the diabetes online community (DOC) as an advisor for the Collaborative Chronic Care Network. So what does she think about Big Data, and how does it influence how we view our own health?

Three Ways Big Data Influences Health Care

1. Research is more accessible
We’re used to typing in our latest concern into Google and seeing pages of results. In 1994, it was an unthinkable prospect. Ms. Fox related a story about a man who impersonated a doctor to gain access to peer-reviewed medical journals in a private library. Why? Because his doctor recommended a procedure, but didn’t provide adequate information to help him understand it. Results of clinical trials and other essential information about the procedure simply weren’t available to him. Now, with a multitude of open access resources at many universities and research centers, a libraries of peer-reviewed publications are readily available.

2. You’re not just treating an individual, but their entire social network
How often have you posted news on social media about a visit to a doctor or clinic—either happy with results, or frustrated by an experience? The power of patient-centered care and sharing online is changing how the healthcare industry operates. Customer complaints are publicly handled on Twitter. Organizations can more efficiently find people willing to participate in clinical trials and studies online (like here on Glu!). How much are you willing to share online—or through a fitness tracker like Fitbit—is another important question that sparked a lot of discussion among the crowd at the AADE conference.

3. Tracking data has become part of our everyday routine
The fitness tracker boom has made the impact of health data on social media even stronger. Ms. Fox provided key statistics from a 2013 report published by the Pew Research Center called “Tracking for Health,” and encouraged CDEs in the audience to use the research center’s reports, which are freely available to anyone. More than 3,000 people participated in the health tracking survey, and it’s clear people are becoming ever more interested in what they learn from tracking their health:

  • 69% of Americans are tracking data either for themselves or a loved one
  • 60% of Americans track their own weight, diet, or exercise
  • 30% track health indicators such as sleep patterns and blood pressure
  • 30% of caregivers track data for a loved one
  • 62% of adults living with at least one chronic condition self-track
  • Of the 7 out of 10 Americans who identify as self-trackers, one third use a journal, one fifth use an app or website, and half track “in their heads”
  • 34% of participants share their data with friends, family, or online
  • 34% reported that reviewing their data has affected a decision about their health
  • 40% said tracking data led them to seek out a second opinion or ask new questions of their doctors
  • 46% said tracking data changed their overall approach to their health
  • 19% of people who have smartphones have health-related apps installed

Within the type 1 community, data gathering has long been part of diabetes management. Many of the tools and resources are better, and improvements come as device and app companies work together to make processing it easier.

You Told Glu!

What have we learned on Glu? It’s about 50/50 in terms of reviewing device data, and those who have both CGMs and insulin pumps are less likely to review their data than people who just have a pump. There were mixed views on the idea of having devices that could connect and combine data. And while most people didn’t have a fitness tracker, there was a lot of interest—being able to afford one was a common concern.

For Anna Floreen, Outreach Manager at Glu, fitness trackers play a role alongside her other devices. “I use my Fitbit as a motivator and a reminder that I’m doing the best I can. Most days I’m sure I to hit 10K steps even when I’m not wearing it, but it’s a nice reminder that I should keep doing what I’m doing. I don’t use the online dashboard, just the app. Diabetes is already a second job for me, so looking at even more data on a computer isn’t worth it, but I do wear the Fitbit every day.”

The Future is Now

In this era of Big Data, there is still a lot to figure out. We’re collecting vast amounts of information, but it has yet to be used to the maximum advantage across healthcare organizations, industry, and beyond. The future looks promising, however, and organizations like T1D Exchange (which maintains Glu) are harnessing that power already to improve outcomes.

Conferences like AADE bring the importance of being able to work with new technology and the data it produces to the forefront. It’s a learning process for people living with diabetes and healthcare providers alike, and it’s exciting to see new developments on the horizon. What is your experience with data, and sharing it with your healthcare team?

Christine Frost, GluChristine

Sign in or Register to view comments.