2 posts tagged “wearable”

Your data doing good: The Fitbit study

Posted December 4th, 2015 by

When you share your health data, we all learn

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members have selflessly shared, and all the good data donation is doing. One example is the Fitbit study we partnered with Biogen on earlier this year. Nearly 250 members living with MS took part in the study, using Fitbit trackers to monitor their walking activity. What did we all learn? That combining the data members add to their PatientsLikeMe profiles with data collected by activity trackers can impact self-discovery and research.

We’ve all seen the popularity of wearable devices (like activity trackers) soar in the last two years. They can keep track of the calories you eat, the steps you take, the sleep you get, and just about everything in between. They’re practical too: easy to use, progressively cheaper to buy, and so low-key that you almost forget they’re there.

As PatientsLikeMe is watching the world of devices evolve, we’ve actually been thinking about its potential impact in a different way, and on a totally different level. These devices make it easier to monitor what’s going on for patients in the real world and in between doctor visits, not just at one point in time, or at appointment with your care team.

Why does this matter to anyone living with MS? For the 45,000 members of the MS community on PatientsLikeMe, they know that the condition can impact their ability to get around. Yet, the standard test to measure how they’re doing over time is the walking test. It’s typically conducted in the perfectly flat and safe hallway of a doctor’s office. That’s not exactly the real world, where pavements can be uneven, obstacles get in the way, and the distance you need to walk is usually a lot farther than 25 feet.

So we thought about the data tracked while using these devices and the impact that they could have in a patient’s life. Could devices help give patients a bigger picture of their habits and health, and help them have more informed conversations with their care team about what to change to improve their outcomes?

Earlier this year, PatientsLikeMe partnered with pharmaceutical company Biogen to find answers, and set out to design a patient-centered study using wearable devices. We kicked off the study with 248 PatientsLikeMe members living with MS. Our goal was to learn if people living with MS could use wearable activity trackers to collect and share their mobility data, which could potentially provide relevant information to their care team and to other patients. Study results were presented at the 67th American Academy of Neurology’s (AAN) Annual Meeting in Washington, DC in April, and here’s what they revealed:

Members were engaged in tracking their activity, even though nearly half had never done so before.

  • About 82% of those that took part activated their Fitbit and authorized PatientsLikeMe to access their data.
  • As a group, they synced their devices an average of 18 days over the 21-day study, for a remarkable 87% adherence rate. Said another way, they stuck with the study. (Now, that’s really donating data!)
  • During the study they walked more than 15 million steps, the equivalent of 6,820 miles or the distance from Boston to Beijing, China.

The study had a lasting impact.

Annette, a PatientsLikeMe member and study participant who had never used a wearable activity tracker before, said she got a lot of positive reinforcement to do more each day. “The Fitbit also allowed me to track what I was eating and how I was sleeping. I made more positive choices as a result.”

Those 248 members used their Fitbits for four weeks, and then we reached out to them with a follow-up survey to get their feedback. About 190 of them completed the survey, and here’s some of what we learned:

  • 89% believe activity tracking is important for health management.
  • 55% believe that the device helped change their health routine.
  • 68% said the device would help them manage and track their MS.

The study and survey made it clear that activity monitoring has the potential to engage patients as advocates in their own care, and give healthcare providers a realistic view of their patients’ daily activities outside of the office. Just how far and wide that impact can go is what we could study next, thanks to patients like you who took these first steps with us to get it all started.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.


PatientsLikeMe study monitors walking activity in people with MS

Posted April 15th, 2015 by

          

Cambridge, MA, April 15, 2015—PatientsLikeMe today announced results of a novel study conducted with Biogen that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data, which could potentially provide relevant information to their clinicians and to other MS patients. These data are being presented at the 67th American Academy of Neurology’s (AAN) Annual Meeting in Washington, DC April 18-25.

“MS impairs the ability to walk for many people with MS, yet we only assess walking ability in the limited time a patient is in the doctor’s office,” said Richard Rudick, MD, vice president, Value Based Medicine, Biogen. “Consumer devices can measure number of steps, distance walked, and sleep quality on a continuous basis in a person’s home environment. These data could provide potentially important information to supplement office visit exams.”

The study was designed to assess the feasibility of using a consumer wearable device to monitor activity among people with MS in a real-world setting. In it, 248 PatientsLikeMe members were provided with Fitbit One™ activity trackers. Of those who received them, 213 (82%) activated the device with the Fitbit website and authorized PatientsLikeMe to access their data. Two-hundred and three of those who authorized sharing of the data synchronized the device with the service and produced tracking data. Participants synced an average 18.21 days of data over the 21-day study (87% adherence).

Paul Wicks, PhD, Vice President of Innovation at PatientsLikeMe, said that advances in wearable health technology have the potential to shed light on disease characteristics. “PatientsLikeMe is in a unique position to combine self-reported data with objective measurement and help patients and researchers learn more to impact self discovery and research.”

The three-week study had a lasting impact on its participants, who together took a total of 15 million steps and walked 6,820 miles, the distance from Boston to Beijing. “I got positive reinforcement to do more each day, and that really encouraged me,” said Annette Smiling, a PatientsLikeMe member and study participant who had never used a wearable activity tracker before. “The Fitbit also allowed me to track what I was eating and how I was sleeping. I made more positive choices as a result.”

After the study period, participants were surveyed to learn more about their study experiences and about their attitudes toward technology and physical activity tracking. Of the 191 participants who responded to the post-study survey, 88 percent reported the device was easy to use and incorporate into their daily routine; 83 percent agreed that they would continue to use the device after the study; and 68 percent believed that the device would be useful to them in managing their MS. Additional survey data is available at http://news.patientslikeme.com.

With more than 38,000 members, PatientsLikeMe’s MS community is the largest and most active MS research community online.

Study Design Methodology
A total of 248 PatientsLikeMe members living with MS were recruited to participate in a study deploying Fitbit One™ activity trackers. Information on patient demographics and level of self-reported functional disability were captured from the participants’ PatientsLikeMe profiles. Devices were mailed to participants with instructions on activation and authorization of data sharing between the manufacturer and PatientsLikeMe. As part of PatientsLikeMe’s member engagement framework, a live concierge service was available to participants to provide answers to technical and other questions. The study also took full advantage of the PatientsLikeMe platform and health tracking tools to engage participants with their data, and with each other. Study participants were able to track their physical activity levels on the PatientsLikeMe website and connect with each other in the MS discussion forum to talk about changing symptoms, benefits and issues. Data were collected for a period of three weeks, and patients were asked to complete a survey to provide feedback on their experiences with the device.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com