Importance of Patient-Generated Data for Research and Care

Reflections from ERS International Congress 2015

By Renee Petrie | @reneepetrie

I was fortunate to attend the 2015 ERS International Congress in Amsterdam. In a city swarming with bike and pedestrian activity, it felt like the right setting for the new global Healthy Lungs for Life campaign, “Take the Active Option.

I did my best to blend in and embrace the life of the locals by walking and biking to the conference and around Amsterdam. Using my new Apple Watch, I was able to track my progress as I took the #ERS10KSteps challenge.

Patient-Generated Data in Promoting Lung Health

An active lifestyle plays a key role in promoting lung health. Providing patients and doctors with the ability to track activity in the real world is more important than ever. The good news is there are plenty of options available. Patients can choose from any number of watches, bands, clips, chips, and mobile apps to find the option that suits their needs.

The bad news is the sheer number of these consumer devices may also be part of the problem. The data from these devices live in various silos that are often fragmented or inaccurate, resulting in an incomplete view of a patient’s health. Most devices currently on the market were developed by tech companies without consistent standards for reliably measuring health outcomes and consolidating patient-generated data into a centralized database.

Because of the inaccuracy and lack of standards, it is often argued that the data from consumer devices is inferior to that captured during a clinical encounter. But is it good enough to be useful? I believe so. The information trended over time can provide valuable insight into overall activity level and reinforce progress toward goals set as part of a care plan.

Data from activity tracking devices also provides a new level of insight into a patient’s life outside the clinic, which is important to understanding overall health. Incorporating this patient-generated data with patient-reported outcomes creates a complete view of a patient’s health.

Providers can use this wealth of information to tailor visits and care plans to a patient’s specific needs and preferences. Personalizing their health care can help improve outcomes, giving patients a compelling reason to continue using these devices. This motivation is  important, because one of the key challenges is maintaining interest after the initial excitement wears off.


Activity plays an important role in promoting lung health. Activity tracking devices are important for understanding these trends. There is much to be gained if device manufacturers, researchers and technology companies collaborate to identify standards for measuring patient-generated data in the real world.

Importance of Patient-Generated Data for Research and Care

Renee helps customers apply DatStat technology solutions across health research and patient-centered population health management.  Before joining DatStat, she spent 17 years in working at nationally recognized research centers. While at University of Washington’s Social Development Research Group (SDRG), she set the standard for maximizing engagement and retention in landmark longitudinal studies. Renee now combines her practical research experience and a fascination with technology to help customers understand how to leverage technology in patient interactions to create ‘sticky’ relationships – ultimately achieving better engagement and outcomes.

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