This document discusses challenges and opportunities in electronically engaging patients for clinical care, research, and education. It uses the Athena Breast Health Network as an example of electronic engagement. Key opportunities include interacting with patients through their preferred channels like mobile, web, and email. Challenges include a lack of policies around email use for research/education and not tracking what mobile devices patients have. As mobile technology becomes more ubiquitous, health systems need policies for electronic engagement across roles and should leverage technologies like smartphones and apps to better communicate and provide services to patients.

1. ENGAGING PATIENTS ELECTRONICALLY FOR
RESEARCH AND EDUCATION:
CHALLENGES AND OPPORTUNITIES

2. 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

3. 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’)

4. 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

5. Athena Website (athenacarenetwork.org)

6. Athena Risk Calculator
USPSTF
NCCN
Gail
Claus BRCAPro
Feeds into
Mammogram
TriggersSchedules Athena Health
Questionnaire
Completed
at 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

7. 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

8. Athena Health Questionnaire System
(Athena HQS)

9. Top Level Survey View

10. How many siblings question

11. Leikert Scale Question Type

12. Medication Closet Question

13. Summary Report

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

15. Reports available
in the Electronic
Health Record
System (EHR) in
Chart Review,
Notes

16. Personalizing Breast Cancer Risk

17. Patient-Centered Trial Matching
http://www.breastcancertrials.org

18. caMATCH Pilot Project 18

19. caMATCH Pilot Project 19

20. caMATCH Pilot Project 20

21. caMATCH Pilot Project 21

22. Challenges
• E-mail addresses as acceptable contact
method
• Text Messaging (SMS)
• Smart Mobile
• Apps

23. 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)

24. 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

25. 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

26. 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

27. 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%

28. 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?

29. 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

30. Questions?