ENGAGING PATIENTS ELECTRONICALLY FOR RESEARCH AND EDUCATION:

CHALLENGES AND OPPORTUNITIES

Overview

• Goal – provide insights into challenges and opportunities in electronically engaging patients for clinical care --- **and** research, education

• Athena as an example ‘use case’ of electronic engagement

• Opportunities

• Challenges

Being “Patient Centered” in Engagement

• Interacting with patients in the ways THEY prefer (on multiple “channels”):

– Paper, phone

– Mobile

– Web

– Email

• Being service oriented

– Self service

– Communicate directly

• Being accessible (on any ‘channel’)

DATA IN Web based Patient Surveys Risk Models/Web Services Molecular Tests Disease Staging Treatment Decisions Outcomes

KNOWLEDGE OUT Personalized Risk Profile Personalized Biopsy Benefit Personalized Breast Cancer

Risk Options for Risk-based Trials Connection to

BreastCancerTrials.org

RESEARCH/QUALITY IMPROVEMENT Biomarker Validation Biomarker Discovery Evidence-based Management Strategies for Personalized Medicine Biospecimen Repository Comparative Effectiveness

The Athena Breast Health Network Project“At a Glance”

4

PATIENTS AND PARTICIPATING SITES

Athena Website (athenacarenetwork.org)

Athena Risk Calculator

USPSTF

NCCN

GailClaus BRCAPro

Feeds into

MammogramTriggersSchedules Athena Health

Questionnaire

Completedat home or in clinic

Creates

If at elevated risk

Woman’s doctor

Athena Participant

Personalized Risk Profile

Athena Central Registry

Blood or Saliva Collected

Provides Consent for Research

UsesReferred to

Lifestyle changes(weight loss, alcohol reduction)

Genetic counseling

Clinical Interventions

If at elevated risk

www.BreastHealthDecisions.org

Athena Breast Health

Specialist

Consultation and Referrals

Athena Health Questionnaire System(Athena HQS)

Top Level Survey View

How many siblings question

Leikert Scale Question Type

Medication Closet Question

Summary Report

Reports arrive in EHR from Athena Health Questionnaire System, force.com

Reports available in the Electronic Health Record

System (EHR) in Chart Review,

Notes

Personalizing Breast Cancer Risk

Patient-Centered Trial Matching

http://www.breastcancertrials.org

caMATCH Pilot Project 18

caMATCH Pilot Project 19

caMATCH Pilot Project 20

caMATCH Pilot Project 21

Challenges

• E-mail addresses as acceptable contact method

• Text Messaging (SMS)

• Smart Mobile

• Apps

E-Mail

• 216.6 million email users in the US (2013) –almost everyone using the Internet, which is roughly 65% of the entire population in the US

• Email is used by healthcare systems in highly variable ways.

• Most health systems use email to alert patients to access the ‘secure messaging’ system in the PHR (ie, MyChart)

Challenges

• Email use “policies” regarding communication with patients are nearly non-existent

• Often, the policies relate only to PHR/clinical interactions (?what about research and education)

• Because use has been limited to PCP-patient communication through PHRs, there is little or no infrastructure to support use beyond that limited context

Opportuntieis:Trend -- “Wireless only” homes

• 2011 – 34% of US households had only wireless phones (“wireless only”)

• Some of the highest wireless only states– Idaho (44.6%)– Arkansas (44.4%)– Mississippi (42.3%)– North Dakota (41.6%)

• Some of the lowest wireless only states– Rhode Island (15.3%)– New Jersey (16.5%)– New York (19.7%)

http://www.cdc.gov/nchs/data/nhsr/nhsr061.pdf

mHealth is revolutionary

• Mobile technology is the most ubiquitous and far reaching technology platform in the world today

• In healthcare, transforms the capability we, as consumers, have in three key areas

– Engaging healthcare services

– Managing health conditions

– Monitoring our physiological state (our health)

30 million wearable health devices were shipped in 2012 (up

37% from 2011)-- ABI Research

75 million US adults used mobile devices to

access health information in 2012

-- Manhattan Research

1 out of 6 seniors in the the lowest income

category have smartphones

-- The Nielsen Company

mHealth Impact

• Recent commissioned study by Boston Consulting looking at mHealth impact

– Costs in elderly care can be reduced 25% with mobile health care

– Maternal/perinatal mortality reduction by 30%

– Tuberculosis treatment compliance improved by 30-70%

– Costs related to data collection reduced by 24%

Do we know who has a mobile device -- and what kind?

• Do health systems keep track of whether a “phone number” is a mobile phone? If mobile phone, is it a smart phone?– ?text messaging– ?push notifications for important messages– ?institutional “mobile web app” to provide a broad variety of

information for patients• Useful information – not only an institutional “news billboard” but

spend as much resources on patient-centered design/services that promote and simplify access to all our services (clinical care, research, education)

• Leveraging geo-location (with permission/consent)

• Do we have policies around this?• Do we have consents around this?• Do we provide guidance with “best practices” around this?

The future• Have policies dealing with electronic engagement with

“people” who are in various roles (patient, research subject, facebook institutional ‘friend’, etc…)

• Have broader policies around electronic engagement (not just email)

• Make sure we can leverage the new technology– Smart phones, geo-location, an “application” as a direct

connection with patients so they can get information and we can communicate with them directly

• Realize we provide a broad range of services and engage people in a number of contexts that benefit from electronic engagement

• In other words – we need to be “mHealth Enabled”as an institution

Questions?