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.

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

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

Interactive care

planning

Personalized education

Personal Health

Analytics Social

engagement

Convenience

Cost transparency

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.

Innovation in Healthcare

Sarah Krüg

Partners in Healthcare

Patient Advocacy

Orgs

Health Systems

Pharma

Payors

Patients & Caregivers

IT Vendors

Other

Role of Patient Advocacy in Innovation?

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

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

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

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

.

CANCER101 (C101)

Who We Are

Our Mission

'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:

Empower. Inform. Organize CANCER101 (C101)

Press & Testimonials

C101 Today: Navigator Program Overview

Navigator Distribution

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

We distribute approximately 100,000 requests per year and receive over

300,000 requests for navigators.

‒Facilitating coordinated cancer management between patients, caregivers and the medical community ‒Enabling patients to document

experiences in a way that complements objective healthcare data gathered during the care process

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

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.

Our Reach • Medical Bills & Insurance Tracker • 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

CANCER101 Tomorrow: Addressing Unmet Need

Expansion to more

Diseases

Navigator Program

Research Platform

Medical & Community

Training

Innovation Platform

Expansion to Additional

Groups

Community Building

Personalized Education

Wellness/Prevention

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

Science of Education

Innovation

Personal-ization

Participatory Education

Meaningful Data

Literacy

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

Recommendation engine provides useful resources, and emerging research based on personal patient profile and usage trends

Sensory Mapping

• Track prescriptions and over the counter medications

• Manage expectations and understand medication and potential side effects by receiving information tailored to treatment pathway and specific side effects

• Set text or email reminders to remember to take medications

• Obtain alerts if there are any drug interactions or adverse events

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

Prevention

Diagnosis

Treatment

CT Awareness

Long Term Survivorship

• 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

Interactive care

planning

Personalized education

Personal Health

Analytics Social

engagement

Convenience

Cost transparency

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

32

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

Interactive Care Planning

Done with, not to, patients

Incorporates patient goals

Incorporates family/caregiver

s

Connected devices and

trackers

Updated in real time

Trends and alerting

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 Resistant Passive Informed Empowered Self-

Actualized

Extrinsic Intrinsic Motivation

Partners

Advisors

Authorities

Atti

tude

tow

ard

doct

ors

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

http://www.himss.org/ValueSuite

40 40

Engagement impacts experience and satisfaction

Engaged consumers have better

outcomes

Self-service strategies reduce costs

Questions? Thank You!

sarahkrug@cancer101.org @sarahkrug1

jan@janoldenburg.com

@janoldenburg