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.

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

20. Planner-Next Edition

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?

29. MATCHMAKING

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

41. Questions? Thank You! sarahkrug@cancer101.org @sarahkrug1 jan@janoldenburg.com @janoldenburg

Innovations & Results: What's Working and What Will it Take?

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