Recently, I sat in on an interesting webinar, presented by the folks at the Robert Wood Johnson Foundation (RWJF), a non-profit looking to address varying healthcare challenges across the country through grants and research. The webinar focused on one of its many initiatives, Project HealthDesign, and it showed me the role observational daily patient data can play in improving outcomes.

Project HealthDesign launched in 2006, and its goal has been to rethink the way personal health records (PHRs) are used in healthcare. Throughout the course of its history, which Project HealthDesign committee advisory member Michael Christopher Gibbons, M.D., associate director of the Johns Hopkins Urban Health Institute, jokingly said dates back to when Google Health was launched, the initiative has hosted several projects aimed at building a better bridge between patients and providers. 

Its most recent batch of projects looked at how observations of daily living (ODLs) can be integrated into patient data. ODLs, as described by RWJF, are the “thoughts, behaviors, and environmental factors that give people clues about their health.” Five particular projects were worked in this initiative and through their research; RWJF was able to prove the usefulness ODLS play in painting a better picture of a patient’s everyday life.

What I like about the five projects was that each one addresses a unique problem. While every patient presents a provider varying issues, these ones are definitely not easily solvable. The five projects are listed below:

dwellSense: Pittsburgh-based Mellon University researchers used small sensors to track the cognitive decline of seniors by looking at how they completed their daily tasks.

Estrellita: University of California-Irvine researchers used a smartphone application and ODLs to track pre-term infants. The app, called a fussy meter, had their mothers record their baby’s mood, socialization, weight, etc.

Chronology.MD: Researchers at University of California-Berkeley, the Healthy Communities Foundation, and University of California-San Francisco used a mobile app and ODL data to work with Crohn’s disease patients.

iN Touch: San Francisco State University researchers used a mobile platform and ODLs to look at young people with obesity and depression.

BreathEasy: Researchers at the Durham, N.C.-based RTI International and the Richmond-based Virginia Commonwealth University worked with asthmatics by giving them an application that recorded, managed, and tracked their ODLs.

Despite a plethora of challenges such as clinical integration and using third-parties for data storage, the five projects all had positive results. Two of the project leaders, Stephen Rothemich, M.D., co-principal investigator for BreathEasy and Katherine Kim, Ph.D. candidate, co-principal investigator for iN Touch, sat in on the webinar to discuss what went right and where they struggled.

iN Touch, which focused on low-income youth in San Francisco, was able to reduce waist measurement by an average of 1.2 inches, and found that each participant had increased confidence in their ability to self-manage. BreathEasy said the project definitely had a clinical impact, as it helped providers look at things they saw including peak flows that were falling or not improving and missed medication doses. As stated earlier, both found challenges in integrating clinical data and ODLs. Rothemich said it came down to a lack of time and money, also mentioning a lack of overall interoperability.

Overall though, ODLs proved to be a powerful tool for clinicians and patients alike. Furthermore, they allow that bridge between patients and providers to be shaped by the former, not the latter – both inside and outside the doctor’s office. This has long been ignored by the clinical community, but hopefully the positive results from this project can open some eyes.

As Dr. Gibbons said, "ODLs are powerful because the choice of observation is not determined by doc or nurse; it’s the patient that decides."