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Strength Through Insight: ResearchKit Apps for PROs
Session 142, February 22, 2017
Neil Gomes | [email protected]
Chief Digital Officer and Senior Vice President for Technology Innovation and Consumer Experience
Robert Neff | [email protected]
Director for Innovative Technology Solutions and Platforms
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Speaker Introduction
Neil Gomes [email protected]
Chief Digital Officer and Senior Vice President for Technology Innovation and Consumer Experience
Robert Neff [email protected]
Director for Innovative Technology Solutions and Platforms
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Conflict of Interest
Neil Gomes, B.Sc., MBA, M.Ed.
Has no real or apparent conflicts of interest to report.
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Conflict of Interest
Robert Neff, B.S.
Has no real or apparent conflicts of interest to report.
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Agenda
• Jefferson Overview
• CDICE Introduction
• ResearchKit Apps
– Why
– What
– The Challenge
– The Solution
• How
– Timeline
– Partners
• Learning
• The Road Ahead
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Learning Objectives
• Describe the capabilities and use cases for leveraging
ResearchKit for collecting PROs.
• Identify mHealth technology’s clinical implication and
challenges.
• Illustrate the challenges of building and deploying of mHealth
technology in academic medical centers.
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An Introduction of How Benefits Were Realized for the Value of Health IT
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Philadelphia
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Thomas Jefferson University & Jefferson Health
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Digital Consumer Experience
Design is How IT Works
Innovative Technology Solutions & Platforms
Agile or Nothing
Innovative Education
Enable Learning
Training, Documentation & Support
Deliver Closed-loop Consumer Experiences
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Prostate Cancer Electronic Patient Reported Outcomes
WH
Y
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Do You Need An App For That?Typical Assumptions About Apps
Everybody…
• has an idea for an app.
• needs an app.
• knows an app will solve all their problems.
• uses apps for lots of things already.
WH
Y
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ResearchKit• ResearchKit is a set of tools that makes coding apps for research on
iOS devices easy.
• Some key components provided
– Survey tools
– IRB consent forms
– Interfaces with sensors
– Wrappers for interfaces with sensors
• ResearchKit is not a magic wand for conducting research with Apps.
• Anything you can do with ResearchKit you CAN do with any other application programing languages too.
WH
Y
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Are Patients Ready For Apps?We asked patients one question:
• Do you have an Android or iOS phone?
In our Population
• Prostate Cancer patients in Center City Philadelphia
– more than half had iPhones
We considered giving iPhones to those who didn’t have them
• determined that adding this bias didn’t make sense.
WH
Y
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Creating an App for Tracking ePROs
• Design and build app
• Determine process for enrolling participants
• Enroll participants in study
• Researchers review progress of participant
WH
AT
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What was Expected• Participant Enrollment Process
• Researchers review progress of participant
WH
AT
Expecte
d Ask the patient to download the app 1 minute
Launch the app, informed consent in app
and log in2 minutes
Total Time: 3 minutes
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Actual Participant Enrollment Process
WH
AT
Actu
al
Ask the patient to download the app Realize the patient has no idea how to do that 2 minutes
Find the App Store on patient’s patient and search for the
app
1 minute
Download app and get prompted for iTunes password Try five different passwords with patient, entering each one a few
times. Call a few family members (grandchildren) to ask if they
know the password.
15 minutes
Decide with patient to go through “forgot my password”
for iTunes
10 minutes
Realize the patient does not know their e-mail account
password
Consider another “forgot my password” attempt for email 5 minutes
Patient guesses password after several attempts –
possibly locking out account in process
2 minutes
Patient resets iTunes password Discuss with patient where to write down new password and
overall password management and internet security
10 minutes
Go back to iTunes store and download app 1 minute
Launch the app, informed consent in app and log in 2 minutes
Total Time: 48 minutes
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We’ve Got An App For That…
Collect electronic patient reported outcomes measures (ePROs) from adult men using validated health related quality of life (HRQoL) assessment tools at baseline, during, and after treatment for prostate cancer.
WH
AT
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The Challenge…
WH
AT
• Develop the instrument
• Do it in ResearchKit
• Keep it low cost
• Scale for other researchers
• Just do it already
• Make it quick
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A Painless Solution…
WH
AT
• mBaaS
• HIPAA-certified solution
• Development platform
• Secure data storage
• ResearchKit ready
• Hassle-free
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If This Sounds Hard, Confusing, And Technical… It Is.
WH
AT
• ResearchKit apps are created just like any others.
• You need software designers, developers, architects, testers, etc.
• You need to determine how to manage security, support, training, bug fixes, etc.
Note: There are some companies that have great drag-and-drop (WYSIWYG) app building tools, and many that include tools to make ResearchKit apps as well.
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What Are The Benefits Of Apps For Research?
WH
AT
• Huge community
– as potential market for taking part in study
• Predesigned processes make things easier and faster to
create
– building informed consent process
– collecting signatures
– connecting to sensors on device
– action tasks with sensors
– sharing data between other health apps
• Push Notifications
• Participant engagement
• Participant retention
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What We Should Have Really Asked…• Do you have a SmartPhone?
– Is it Android or iOS?
• Do you have apps on your phone?
– Have your ever downloaded an app yourself?
• Do you
– know your iTunes password?
– know your email password?
– share your phone with anyone else?
– need help to reset your iTunes or email password?
KEY: Who helped you setup your phone?
WH
AT
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Process to Build…
HO
W
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Partners• What should we build and who should we
partner with?
• Sever infrastructure
• mBaaS (mobile Backend as a Service):
– Several HIPAA-certified options – this is an example of a good partnership
• Support platforms
– CloudMine, Kinvey, etc…
HO
W
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Timeline
HO
W
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ResearchKit / mBaaS Design Diagram
HO
W
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Learning• All providers need to be engaged and equally invested for success
• Training and education of providers needs to be considered
• Is not enough to ask Android, or iOS….
• Even among the younger generation of tech savvy doctors – there is a lack of knowledge of how technology is created and works
• Even though it seems hard to do, doesn’t mean we shouldn’t do it (the benefits far outweigh the costs)
• Spend time to chart the enrollment process for participants
• Use data and data displays to engage participants
• The management of the data (i.e. the researcher console) for the app is very important
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The Road Ahead
Fun ResearchKit apps
BPM and workflow apps
Medical device integration via IoT
Clinical process improvement apps
EHR and business system augmentation applications
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Strength Through Insight
Together We Can Change Lives
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What Got You Here… Will Not Get You There
• New ideas, outside-in thinking, thinking without the box
• Immersive development
• Validate the problem or find the real one
• Then devise a solution
• Build… test… iterate… rebuild…
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IT as Change Agent
• Information as a catalyst for change
• Technology as a driver for change
• Scrum as a framework for change
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Digital Consumer Experience
Design is How IT Works
Innovative Technology Solutions & Platforms
Agile or Nothing
Innovative Education
Enable Learning
Training, Documentation & Support
Deliver Closed-loop Consumer Experiences
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Never Forget
…We are human…
And our humanity is best realized in the service of others
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STEPS: Patient Engagement & Population Management
Mobile apps allow
patients to impact
their health
outside of a
traditional office
setting.
Notifications,
reminders and
other prompt can
keep patients
more regularly
engaged in their
health.
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STEPS: Electronic Secure Data
Carefully
architected
databases and
infrastructure offer
more security and
auditability.
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Questions
Neil Gomes
Chief Digital Officer and Senior Vice
President for Technology Innovation and
Consumer Experience
Robert Neff
Director for Innovative Technology
Solutions and Platforms
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