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1 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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1

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

2

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

3

Conflict of Interest

Neil Gomes, B.Sc., MBA, M.Ed.

Has no real or apparent conflicts of interest to report.

4

Conflict of Interest

Robert Neff, B.S.

Has no real or apparent conflicts of interest to report.

5

Agenda

• Jefferson Overview

• CDICE Introduction

• ResearchKit Apps

– Why

– What

– The Challenge

– The Solution

• How

– Timeline

– Partners

• Learning

• The Road Ahead

6

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.

7

An Introduction of How Benefits Were Realized for the Value of Health IT

8

Philadelphia

9

Thomas Jefferson University & Jefferson Health

10

11

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

12

Prostate Cancer Electronic Patient Reported Outcomes

WH

Y

13

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

14

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

15

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

16

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

17

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

18

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

19

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

20

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

21

A Painless Solution…

WH

AT

• mBaaS

• HIPAA-certified solution

• Development platform

• Secure data storage

• ResearchKit ready

• Hassle-free

22

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.

23

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

24

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

25

26

Process to Build…

HO

W

27

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

28

Timeline

HO

W

29

ResearchKit / mBaaS Design Diagram

HO

W

30

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

31

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

32

Strength Through Insight

Together We Can Change Lives

33

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…

34

IT as Change Agent

• Information as a catalyst for change

• Technology as a driver for change

• Scrum as a framework for change

35

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

36

37

Never Forget

…We are human…

And our humanity is best realized in the service of others

38

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.

39

STEPS: Electronic Secure Data

Carefully

architected

databases and

infrastructure offer

more security and

auditability.

40

Questions

Neil Gomes

Chief Digital Officer and Senior Vice

President for Technology Innovation and

Consumer Experience

[email protected]

Robert Neff

Director for Innovative Technology

Solutions and Platforms

[email protected]