Last fall, the Yale School of Medicine announced the Yale Cardiomyopathy Index, an iPhone-based clinical study to assess quality of life for those ages 2 to 80 who may be at risk of developing cardiomyopathy, a heart muscle abnormality.
The study involved a ResearchKit app created by two Yale School of Medicine researchers, E. Kevin Hall and Michael Spencer-Manzone. It was the first study using ResearchKit to better understand heart ailments among children and young adults.
Since then, advancement of ResearchKit and other healthcare-related technologies and tools has continued at a consistent rate. FierceMobileHealthcare reached out to Hall, an assistant professor of pediatrics and director of Yale's pediatric heart failure program, for insight on the effort, ResearchKit and what else he’s working on in related to digital health.
FierceMobileHealthcare: How critical a role do you see ResearchKit playing in healthcare in the near future and as it evolves and expands?
E. Kevin Hall: ResearchKit and efforts like it will be a very important factor going forward. My hope is all these efforts facilitate and improve a shared dialog amongst us all as students and participants in medical research. The tools are here but we are still discovering how to best employ them and problems such as discoverability and engagement remain.
FMH: What have you and your colleagues been able to learn through the Yale Cardiomyopathy Index and what do you anticipate may be learned further down the road?
Hall: We’re still in the midst of the study. I’ll let you know.
FMH: Speaking of Apple tools, what is your view on the impact HealthKit will have on healthcare?
Hall: The addition of HL7 support to HealthKit is a wonderful and welcome addition and frankly a delightful surprise. I hadn’t anticipated Apple would attempt to scale the HL7 mountain at this time: it’s a contender for the Everest of problems in clinical medicine and definitely not from the typical consumer-facing domain.
FMH: What would you like to see in terms of future advancements/enhancements for HealthKit?
Hall: HealthKit is a wonderful start. It wasn’t too long ago that applications needed to worry, to a greater or lesser extent, about the device layer between general computing devices (computer, mobile phone) and specialized devices such as mobile biometric sensors. HealthKit abstracts that problem, acting as a common data repository to which sensors now are compelled to write. In the past in iOS, individual apps would write biometric data to separate data silos with little chance for exchange of data between these pools.
Now, instead of worrying about communicating directly with devices over a Bluetooth protocol or something similar, App developers make a call to a single standardized data source and, with a user’s permission, have available all the biometric data at once.
HealthKit has its limitations however. The context of the data is not easily stored in a standardized manner, and the context of where we use a medical device can sometimes prove important. Apple answered this lack of extensibility by allowing dictionaries of metadata to be stored alongside the biometric data. But for the most part the dictionary keys remain ill-defined and unstandardized.
It would be nice to access HealthKit data outside of iOS, and I assume this is something being worked on. There’s also limited info stored for the source of the data. Knowing what device recorded and stored the data would be an important step in data validation.
FMH: There’s been much back and forth on overall health app reliability. What’s your take on the validity and usefulness of today’s health apps and what should be done to shore up trust?
Hall: App reliability won't be a problem, provided there isn’t a security breach. Medical researchers writing medical apps is a very new world and we’ll get the bugs and stability ironed out.
App discoverability, however--a user discovering a medical research app for him/herself in the app store--remains a problem and is still vastly difficult.
The value question is an important one. We researchers must clearly answer to participants what value our apps return to them; the days of pure just-give-me-your-data research apps are probably gone.
FMH: There has been tremendous response to American Medical Association CEO James Madara's comments on digital snake oil. What’s your response?
Hall: I think his reasoning is sound. There are some great apps and technologies out there created and supported by smart and hardworking researchers with noble goals. But with any new gold rush phenomenon there will be those who attempt to game the system for money; this phenomenon isn’t new. The most important thing is, as always, that the consumer do the best he/she can to educate him/herself and make wise decisions.
Editor's Note: This interview has been edited for clarity and length.