Using Data Visualization in Public Health Communications
Innovations & Results: What's Working and What Will it Take?
1. Innovations & Results What's Working and What
Will it Take?
February 23, 2014
Sarah Krüg
CEO, CANCER101, Society for Participatory Medicine
Founder, Krug Global Solutions
Jan Oldenburg
Principal, JanOldenburg.com
DISCLAIMER: The views and opinions expressed in this presentation are those of the author and do not necessarily represent official policy or position of HIMSS.
3. Learning Objectives
• Explain innovations in the field of patient
engagement
• Recognize the hallmarks of successful
innovations
• Identify innovations to invest in
• Design innovation programs for success
.
4. Key patient engagement trends to watch
Gamification
Cost
transparency
Interactive
care
planning
Personalized
education
Convenience
Social
engagement
Personal
Health
Analytics
5. Innovation in Healthcare
Sarah Krüg
DISCLAIMER: The views and opinions expressed in this presentation are those of the author and do not necessarily represent official policy or position of HIMSS.
7. Role of Patient Advocacy in Innovation?
Patient advocacy organizations are a lifeline to patients
and caregivers as they interface with the healthcare system
and can serve as a liaison between clinicians and their
patients
Key influencers disrupting the healthcare
landscape
Impacting strategies, policies, and setting
the stage for patient-centric solutions
Thought leaders influencing the way healthcare
systems think about and interact with patients &
caregivers
8. CANCER101 (C101)
Our Mission
Empower. Inform. Organize
To empower, inform and engage patients and their
caregivers to take control over their diagnoses, navigate
the cancer journey, and partner with their healthcare team
to make informed decisions
.
Who We Are
To fulfill its mission, C101, founded in 2002:
− Meets the cancer patient and caregiver on the front line and turns a chaotic
experience into a calm and organized plan of attack
− Provides innovative tools and resources patients and caregivers need to
manage chronic condition in partnership with the healthcare team
− Creates a comprehensive roadmap for patients by filtering “garbage from
gold”, aggregating best practice content through partnerships
− Personalization of the patient experience - one patient at a time-through
tailored education based on personal profile
9. CANCER101 (C101)
Empower. Inform. Organize
Press & Testimonials
'I am so grateful to have such a wonderful asset to help me along
my cancer journey. The CANCER101 Planner has kept things neat
and orderly. It has helped me know what to expect. It has calmed
my anxieties and fears. This truly is a treasure and I can't think of
any way to make it any better.'
- Norma W., Breast Cancer, Golden, CO
"...the perfect addition to her Personal Health Record and the hospital's
Electronic Health Record since it enables her to document her thoughts and
experiences in a way that complements the objective healthcare data gathered
during the care process." – – John D. Halamka, MD, MS, CIO at Harvard Medical
School & Beth Israel Deaconess Medical Center gives kudos to C101 tool for
bringing order to wife's cancer journey
http://geekdoctor.blogspot.com/2012/01/cool-technology-of-week.html
Cancer101 has been Featured On:
10. C101 Today: Navigator Program
Overview
Cancer101’s Navigator guides patients through the cancer journey by:
‒ Igniting a participatory relationship between patient, caregiver and clinician
at the point of care, encouraging partnership that converges a patient’s
day to day life expertise with a clinician’s medical expertise.
‒ Providing information to understand treatment options
‒ Deploying tools to track and manage symptoms and medications
‒ Arming patients with a platform to keep it all organized
‒ Facilitating coordinated cancer
Navigator
management between patients,
Distribution
caregivers and the medical
community
‒ Enabling patients to document
experiences in a way that
complements objective healthcare
data gathered during the care
process
We distribute approximately 100,000
requests per year and receive over
300,000 requests for navigators.
11. C101 Today: Navigator Program
CANCER101 Today
Navigator Sections
• Tumor Specific Information (22 different Cancer Types)
• myMedical History
• Questions to Ask Doctor
• What is a Clinical Trial?
• Symptom & Medication Tracker
• Medical Bills & Insurance Tracker
Our Reach
• 10 Year Calendar & Appointment
Tracker
• Caregiver Support
• Medical Dictionary
• National Resources
• Understanding the Healthcare System
• My Toolbox (Health Summary
Templates, etc)
• Managing the Costs of Care
We partner with over 1200 cancer centers and
community oncology practices to disseminate our
materials in all 50 states & Canada. We have also
received requests from over 40 countries.
12. CANCER101 Tomorrow: Addressing Unmet
Need
Navigator
Program
Personalized
Education
Innovation
Platform
Medical &
Community
Training
Research
Platform
Community
Building
Expansion to
more
Diseases
Expansion to
Additional
Groups
Wellness/Pre
vention
13. A Case Study: How do we replicate success as
we convert to digital?
14. E-Navigator
• Document and
manage symptoms
to share with the
medical team
• Organize
appointments/ task
lists and set text
/email reminders
• Record
medications and
associated adverse
events/symptoms
15. Building Technology Based on Evidence Based
Needs
Cancer navigation is complex. Education and disease management are an important
component of care
Disease management systems can help bridge the gap in patient: clinician
communications
Oversaturation of self management technology and very little information on the efficacy
of the various tools
Disconnect between explosion of healthcare technology and point of care
Data not collected in a meaningful and standard method for the clinician to integrate
seamlessly
Information overload
Most education is one size fits all
Based on these needs, which tools work within the cancer community and which
don’t?
•
16. Research Assessment
Survey educational and tracking mechanisms that are currently being
utilized by cancer community
Understand which educational & tracking mechanisms are most
beneficial to the patient and caregiver during treatment
Which educational & tracking mechanisms are most beneficial
to the patient: provider relationship?
Test disease management tools with patient/caregiver population
Health literacy assessment
Analyze & evaluate effectiveness
Incorporate assessment into personalized solutions
Build platform based on evidence
17. What is Missing?
Code of
Ethics
Literacy
Science of
Education
Meaningful
Data
Innovation
Participatory
Education
Personalization
19. Health Literacy Assessment
I.
Assembled Health Literacy Committee: Message Content, Text
Appearance, Visuals, Layout & Design, Understandability, Numeracy,
Measurement Systems & Graphs, Readability
II. Patient Focus Groups made up of varied patient profiles accounting for
different age ranges, Ethnicities, Education level, Literacy Levels, Phase in
Journey, Activation Level
III. Caregiver Focus Groups to address specific needs
IV. Analyzed assessment data from patients, caregivers and health literacy
experts
V. New Content & Redesign based on unmet need & feedback
VI. Health Literacy Guidelines on Multi-Media
21. Personalized Education Dashboard
Personalization of the patient experience
…one patient at a time
Interactive disease management system
Tailored education provided to patient
based on personal profile, symptoms
and medications entered
Customized education that builds a
relationship with the learner based on
entry points, symptoms & medications
Manage expectations and understand
medication and potential side effects by
receiving information tailored to treatment
pathway and specific side effects
•
Track prescriptions and over the counter
medications
•
•
Set text or email reminders to remember to
take medications
•
Obtain alerts if there are any drug interactions
or adverse events
Recommendation engine provides
useful resources, and emerging research
based on personal patient profile and
usage trends
Sensory Mapping
22. The Patient Shark Tank®: If you build it, they will come?
The Patient
How do you incorporate the voice of patient into the design,
development or enhancement of innovation being developed by
the healthcare community and move away from the notion: "If
you build it they will come”?
As each innovator pitches their concept, technology, or initiative,
patient panelists will ask targeted questions based on their
experiences to understand how the innovation will reach and uniquely
respond to patient needs.
24. How do we address the patient: clinician
communication gap using technology?
25. How do we solve for information overload,
ensuring the patient has access to credible
resources at relevant phase in journey?
Right information at the Right Time
26. Prescription to Learn
TM
CT Awareness
Long Term
Survivorship
Treatment
Diagnosis
Prevention
• Overwhelming amount of trackers, applications, brochures, books,
websites, videos, tools, support communities that a patient has to
navigate across cancer journey.
• Recommendation engine will provide other useful resources as a
phase II based on search criteria
• Code of Ethics
• Criteria
• Matchmaking
• Request for Solution
27. Prescription to Learn™
A learning platform that facilitates
connections by allowing the
clinician to assess specific needs
of the patient and personalize the
education experience through a
selection of educational
interventions specific to phase in
journey
Emphasizes the need to
prescribe learning at the point of
care-right resource, for the right
patient at the right time
Anchored on patient needs
promoting the inclusion of
patients as vital partners in a
continuously learning care team
28. How do we integrate explosion of
healthcare innovation into point of
care?
30. Key patient engagement trends to
watch
Gamification
Cost
transparency
Interactive
care
planning
Personalized
education
Convenience
Social
engagement
Personal
Health
Analytics
31. Gamification
Providers and payers experimenting with gaming:
Dr. Joseph Cafazzo using BANT to encourage
children to manage diabetes: 49% improvements in
adherence and 87% satisfaction rate
Kids using Zamzee showed 59% increase in
moderate-to-vigorous physical activity, reduced LDL
cholesterol levels, and improved blood sugar
DietBet and StickK enable people to bet on meeting
their weight loss goals
32. Gamification
Insurers investing in gaming for behavior change:
Aetna: “Get active Aetna” and Mindbloom
Cigna links to “Daily Feats” to reward
healthy behaviors
United, “Optimize Me” encourages earning
digital badges with rewards
Wellpoint using Kinect to get kids to
exercise
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33. Interactive Care Planning
Trends and
alerting
Updated in real
time
Connected
devices and
trackers
Done with, not
to, patients
Incorporates
patient goals
Incorporates
family/caregiver
s
34. Personalized education
• Directly linked to patient’s conditions and
issues
• Tailored to patient:
– Learning style
– Education level
– Stage of disease
– Activation level
36. Personal health analytics
• Quantified self data informing clinical
practice
• Recommended treatment plan
incorporating:
– Personal genome profile
– Critical triggers or disease
characteristics
– Personal values and goals
– Previous history
37. Social engagement
• Opportunity to engage
with or compete against
family and friends
• Opportunity to exchange
data with patients like me
• Opportunity to enlist
community in supporting
achievement of health
goals
38. Convenience as loyalty strategy
• Move to self-service
• Investment in moving back office operations
into patient hands
• Focus on location and nature of
consumer/patient needs
• Even convenient billing
can generate loyalty
• Strategy increases
satisfaction while
reducing costs
39. Cost transparency as differentiating
factor
• Incorporating ways to simplify link
between cost estimation, provider
bill, insurance claims information
• Incorporating cost into shared
decision-making discussion
• Recognizing cost as an
“unmentionable” that affects
patient actions
40. Patient engagement affects all
dimensions of the triple aim
Engaged
consumers
have better
outcomes
Engagement
impacts
experience and
satisfaction
Self-service strategies reduce
costs
http://www.himss.org/ValueSuite
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