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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.
Conflict of Interest Disclosure
Jan Oldenburg, FHIMSS and Sarah Krug have no
real or apparent conflicts of interest to report.

© 2014 HIMSS
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
.
Key patient engagement trends to watch
Gamification
Cost
transparency

Interactive
care
planning

Personalized
education

Convenience

Social
engagement

Personal
Health
Analytics
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.
Partners in Healthcare

Other

Patient
Advocacy
Orgs

Health
Systems

IT Vendors

Patients &
Caregivers

Pharma

Payors
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
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
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:
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.
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.
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
A Case Study: How do we replicate success as
we convert to digital?
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
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?
•
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
What is Missing?
Code of
Ethics

Literacy

Science of
Education

Meaningful
Data

Innovation

Participatory
Education

Personalization
What is Missing?

How do we account for health literacy needs?
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
Planner-Next Edition
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
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.
Patient Shark Tank® Scorecard
How do we address the patient: clinician
communication gap using technology?
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
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
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
How do we integrate explosion of
healthcare innovation into point of
care?
MATCHMAKING
Key patient engagement trends to
watch
Gamification
Cost
transparency

Interactive
care
planning

Personalized
education

Convenience

Social
engagement

Personal
Health
Analytics
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
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
32
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
Personalized education
• Directly linked to patient’s conditions and
issues
• Tailored to patient:
– Learning style
– Education level
– Stage of disease
– Activation level
Personalized education and activation
Attitude toward doctors

Resistant

Passive

Informed

Empowered

SelfActualized

Partners

Advisors

Authorities
Extrinsic

Motivation

Intrinsic
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
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
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
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
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

40

40
Questions?
Thank You!

sarahkrug@cancer101.org
@sarahkrug1
jan@janoldenburg.com
@janoldenburg

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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.
  • 2. Conflict of Interest Disclosure Jan Oldenburg, FHIMSS and Sarah Krug have no real or apparent conflicts of interest to report. © 2014 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.
  • 6. Partners in Healthcare Other Patient Advocacy Orgs Health Systems IT Vendors Patients & Caregivers Pharma Payors
  • 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
  • 18. What is Missing? How do we account for health literacy needs?
  • 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.
  • 23. Patient Shark Tank® Scorecard
  • 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 32
  • 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
  • 35. Personalized education and activation Attitude toward doctors Resistant Passive Informed Empowered SelfActualized Partners Advisors Authorities Extrinsic Motivation Intrinsic
  • 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 40 40