1. INNOVATION, BIG DATA, AND THE FAMILY CAREGIVER MaryAnne Sterling Co-Founder, Connected Health Resources @SterlingHIT April 29, 2015

2. 93,000,000

3. 522Billion

4. 2014 © CONNECTED HEALTH RESOURCES 4 INFORMATION NEEDS Allergies Transportation Insurance Medications Assisted Living Diagnosis Hospice Diseases Immunizations Appointments Doctors Care Plan Support Group Treatment Medical Equipment Specialists Test Results ADLs Home Safety Medicaid Respite Care Financial Choices Advocacy Services Rehab Meals-on-wheels Medicare Mental Health Advanced Directive Home Health Senior Center Visiting Nurse Social Workers Assistive Devices Nursing Home Health History

5. CAREGIVING INFORMATION CYCLE 2014 © CONNECTED HEALTH RESOURCES 5 Crisis Accident/injury New Diagnosis Care Transition New Care Setting New Phase of Recovery/Illness Maintenance Chronic Condition Permanent Disability

6. CRISIS 2014 © CONNECTED HEALTH RESOURCES 6 Caregivers may need to provide patient information to healthcare professionals, including…  Allergies and health history  Family health history  Immunizations  Test results/labs/films  Health insurance Caregivers need to gather information, including…  Diagnosis or injury details  Disease-specific information  Care options  Next steps Crisis Accident, injury, or new diagnosis

7. CARE TRANSITION & MAINTENANCE 2014 © CONNECTED HEALTH RESOURCES 7  The patient’s care plan  Housing/caregiving options (i.e. rehab, home health, nursing home, hospice)  Community resources (i.e. meals on wheels, transportation)  Instructions for performing caregiving activities  Medical equipment Care Transition new care setting or new phase of recovery/illness  Long-term care supports  Financial options  Assistive devices  Medication regimens  Respite care  Support groups Maintenance chronic condition or permanent disability Caregivers may need to gather information about…

8. FAMILY CAREGIVERS & TECHNOLOGY 2014 © CONNECTED HEALTH RESOURCES 8 Categories of Activities that Technology can Support

9. CRISIS 2014 © CONNECTED HEALTH RESOURCES 9 Crisis CategoryInformation Needed Access allergies, family health history, medical records, test results, medication lists, insurance statements/bills, legal documents such as healthcare proxy Track immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location Managemedication administration, refills, care plans, insurance, and finances Coordinate doctor appointments and referrals, in-home care and services, other family caregivers, transportation, meals-on-wheels, medical equipment Connectwith other caregivers, providers, family members, friends, and support groups Learnabout a diagnosis, disease, treatment, or the latest research; community supports, social services, and housing options

10. CARE TRANSITION 2014 © CONNECTED HEALTH RESOURCES 10 Care Transition CategoryInformation Needed Access allergies, family health history, medical records, test results, medication lists, insurance statements/bills, legal documents such as healthcare proxy Track immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location Manage medication administration, refills, care plans, insurance, and finances Coordinate doctor appointments and referrals, in-home care and services, other family caregivers, transportation, meals-on-wheels, medical equipment Connect with other caregivers, providers, family members, friends, and support groups Learnabout a diagnosis, disease, treatment, or the latest research; community supports, social services, and housing options

11. MAINTENANCE 2014 © CONNECTED HEALTH RESOURCES 11 Maintenance CategoryInformation Needed Access allergies, family health history, medical records, test results, medication lists, insurance statements/bills, legal documents such as healthcare proxy Track immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location Manage medication administration, refills, care plans, insurance, and finances Coordinate doctor appointments and referrals, in-home care and services, other family caregivers, transportation, meals-on-wheels, medical equipment Connect with other caregivers, providers, family members, friends, and support groups Learnabout a diagnosis, disease, treatment, or the latest research; community supports, social services, and housing options

12. TECH CHALLENGES FOR FAMILY CAREGIVERS  Very few tools are designed specifically for family caregivers and their information needs  Availability of these tools does not guarantee access to information  Finding time to incorporate new technology into daily routines is often prohibitive, along with the applicability of technology to real-life caregiving scenarios  Uncoordinated technology (e.g. multiple patient portals) may simply create more silos  The language of healthcare is not the language of the average American  Not all caregiving challenges can be solved with technology 2014 © CONNECTED HEALTH RESOURCES 12

13. DATA BARRIERS  Electronic access to personal health data is spotty. Blue Button is still in its infancy. It is difficult to obtain medical records.  Information on the web is not curated and written at a high literacy level. It becomes a mine field for caregivers to find, sift through, and comprehend medical information.  Patient (and Caregiver) Generated Health Data is not widely accepted and no framework exists for receipt/review/response of PGHD by providers 2014 © CONNECTED HEALTH RESOURCES 13

14. BLUE BUTTON?  Lead by the Office of the National Coordinator for Health IT (ONC)  A way you can access your health records electronically so you can:  Share them with your doctor or trusted family members or caregivers  Check to make sure the information, such as your medication list, is accurate and complete  Plug your health information into apps and tools that help you set and reach personalized health goals  Healthcare providers or health insurance companies may offer you the ability to view online, download, and share your health records via Blue Button – but not everyone participates yet  More info: http://www.healthit.gov/patients-families/blue-button/about- blue-buttonhttp://www.healthit.gov/patients-families/blue-button/about- blue-button 2014 © CONNECTED HEALTH RESOURCES 14

15. CONNECTED HEALTH RESOURCES 15

16. CONNECTED HEALTH RESOURCES Who we areThe services we offer 2014 © CONNECTED HEALTH RESOURCES 16  Women-owned start-up led by veterans in healthcare and caregiving  Team comprised of leading technology and service providers  Addressing health literacy, social determinants of health, and care transitions  Community Health Gateway: Personalized health platform that addresses health and social services needs across the care continuum  Tools to help patients more easily understand their health information and the healthcare system  One platform for providers, patients, and family caregivers

17. 2014 © CONNECTED HEALTH RESOURCES 17 PERSONAL HEALTH PLATFORM One platform for providers, patients, and family caregivers

18. CLINICAL TRANSLATION 18 Low Health Literate Clear, simplified discharge instructions in patient’s language and English Plus patient-specific medication regimen summary 2014 © CONNECTED HEALTH RESOURCES English, Spanish, Mandarin, Cantonese, Korean, Haitian, Creole, Italian, French, Arabic, Russian, Bengali, Polish, Karen, Burmese, Somali, Swahili, Vietnamese, Yiddish Coming soon: Farsi, Brazilian Portuguese, Tagalog

19. 2014 © CONNECTED HEALTH RESOURCES 19 COMMUNITY RESOURCE FINDER 1) Think about your family’s needs 2) Learn about available services 3) Find service providers in your community

20. CHR “FIRSTS” (AKA INNOVATION)  First to develop a shared platform where health and social service providers, patients, and family caregivers ALL contribute information to support the patient’s health goals  First to use SureScripts pharmacy data via the Maryland HIE to support medication therapy management  First to tackle a plain-language consent process 2014 © CONNECTED HEALTH RESOURCES 20

21. WHAT IF…  Google maps showed us where an Assisted Living facility was located and if they had a Medicaid bed available  CMS made timely prescription drug information available to patients and their caregivers online in all federally supported programs – Medicare, Medicaid, and Marketplace  CMS enabled identification/authorization of family caregivers through Medicare.gov and providers queried to know who represents health proxy, advocate and spokesperson for patients when needed  The industry moved beyond Blue Button and portals to support easy data aggregation by patients along with tools for translation  Patient Generated Health Data became part of the fabric of healthcare and clinical research 2014 © CONNECTED HEALTH RESOURCES 21 CMS = Centers for Medicare and Medicaid Services

22. 2014 © CONNECTED HEALTH RESOURCES 22 Healthier Community Easy access to coordinated healthcare, social services, community supports Care planning and daily living support for patients and families in health crisis Patients and families engaged thru plain language and multilingual information BIG DATA SHOULD ENABLE… Healthcare happens in the community

23. CONTACT INFO 2014 © CONNECTED HEALTH RESOURCES 23 Email: msterling@connectedhealthresources.com Website: www.connectedhealthresources.com Twitter: @SterlingHIT