Early Experiments w/ Research Kit Apps – Quick Review of the Asthma App from Mt Sinaiby Applied Informatics
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We have been actively following the developments regarding Apple’s Research Kit initiative. Technologies that enable patients to further engage with clinical research has a special place in our company; in fact we started with building TrialX, an online platform to connect patients to clinical trial investigators near them. And for sometime now we have been working on developing tools that enable patients to donate data to enable research (more on our DonateData initiative to come later).
With that preamble, let us dive straight into what a Research Kit app looks like, beginning with the Apple App Store:
Step 1. Finding and downloading a Research Kit App: Note: it says “a Research Kit app” not “the Research Kit app”. There is no one Research Kit app – Apple has approved 5 apps that are built utilizing the Research Kit SDK, which they have also open-sourced (we will be writing a deep technical blog on this SDK). I downloaded the Asthma App (see image below) that has been built by the School of Medicine at Mt. Sinai.
Step 2. Signing up for the App/Study – Eligibility and Consent process
Once you have downloaded the app, tap it to start use, it provides you a brief introduction about the app and its purpose. The app has been designed to “serve as a personalized tool that helps you gain greater insight into your asthma, adhere to treatment plans, avoid triggers and take charge of your health.”
Furthermore it adds that the app enables you to join a research study in which “you’ll be prompted to complete daily and weekly tasks that should only take a minute or two a day to complete, for a total of 15 minutes each week. The study lasts for 6 months.”
To begin using the App you have to first answer a few questions to determine if you are eligible for this study. Now the first time I answered, it came back saying I didn’t qualify for the study 🙁 (image below).
But you can always go back and change one of the answers and lo and behold you are now “eligible” to participate.
Next comes consent. All research studies are required to provide details and obtain patient consent and the app includes this (it seems like these are the modules or functions that come within Research Kit SDK so that apps can quickly program consent). The consent process took me through a series of screens to explain details with regards to,
- Data gathering – it informs you that it will use location data and your sensor data to track your activities!
- Privacy – that a random code will be used to denote me instead of my name.
- Data use – pledges to not sell data to commercial entities.
- Study tasks – supposedly this will not take more than 15 min per week for 6 months (more on this later but it does take longer than that to fill some of the questionnaires)
- Study benefits
- Withdrawing from the study – yes it says I can but data collected until that time will remain as part of the research study
I then had to answer some questions (sort of a quiz) to denote that I had understood what I am consenting to. See screenshot.
Finally once you successfully pass the consent quiz, you sign your consent. Next you have to verify your email and finally set a passcode (to access the app you have to either use your apple TouchID or the passcode).
Note: This process can take minutes and I probably clicked through 2 dozen screens. It is understandable since consent documents can be pages long – sort of the like the TOS that we all blindly just check off when loading new software but I am not sure if everyone will have the patience to go through such a long step. In real world research studies patients are given the consent document to read and then go over with the research coordinator who can explain any details. This step could be where a lot of the potential interested participants may simply drop off. I survived!
Step 3. Filling up your History and other Details
Once you have been found eligible, you can start using the App. It asks for your permission to automatically pull in some of your information from your HealthKit data – see image below.
However it pulled in my wrong age (10 yrs younger!)
It has several basic questionnaires (image below) to ascertain information “About you” (8 questions), your Asthma History (13 questions), Asthma medication (19 questions) and so forth.
Each question in the survey is one screen (see image below) which is helpful and the App allows you to skip a question.
But it does take a few swipes to go through all these questions (if you want to). Not sure why, but the way the App is built, it doesn’t let you save a questionnaire – either you complete it or if you “cancel”, it discards all the answers to previous questions in that survey. I guess this has to do with not having incomplete data as part of the research study.
Step 4. Doing the Daily Tasks
The App has a daily questionnaire of 8 questions that asks user, information about their asthma symptoms, inhaler use and medication adherence. One of the annoying UI issues is that after you select an option to denote your answer you have to scroll down all the way to click on the next button in screens with lots of options! One of the questions require you to enter data about your airflow from a device, which again may pose a barrier for some people. There is also a weekly survey.
The app has a few graphs and charts to show your symptom trends, peak flow and it does read information from the HealthKit record to pull in your daily step count. It also shows badges for completing daily tasks, but I am not sure how motivating that will be for users.
In our first look at a Research kit App, we downloaded the Asthma App and managed to go through the entire process of consent and sign up. I was also able to fill a couple of their questionnaires but did not feel motivated enough to complete all the tasks and questionnaire. With respect to daily tasks, the App does not have a push notification feature so I didn’t even bother to complete the daily tasks and it didn’t send me any reminders to nudge me to complete them. Expecting patients to fill daily surveys may not yield the desired engagement. In fact nothing about Research kit at this time makes these apps any more interesting than what one could make as a regular app.
But these are early days of this app universe and I am sure each iteration will get things better. The real value, we believe of such Apps is their ability to read device data that are stored in HealthKit. Moreover, we think the research community will have to design different kind of studies that are suited for this platform and to leverage automatic device data than human input data. The more this can go in the background, even better. At Applied and TrialX, we are excited about this development as it enables new opportunities to engage patients in the research process.
Stay tuned for more in-depth blogs both on other apps, the SDK and our own efforts on how to address the inherent bias that such apps have – that they currently only run on iOS.