1. ACCESSIBILITY AND USABILITY OF HEALTH IT THROUGH THE EYES OF THE FAMILY CAREGIVER MaryAnne Sterling Co-Founder, Connected Health Resources @SterlingHIT September 17, 2015

2. 39%

3. 95 Million

4. 522 Billion

5. NEEDS 5

6. 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 2014 © CONNECTED HEALTH RESOURCES 6

7. CAREGIVING INFORMATION CYCLE Crisis Accident/injury New Diagnosis Care Transition New Care Setting New Phase of Recovery/Illness Maintenance Chronic Condition Permanent Disability 2014 © CONNECTED HEALTH RESOURCES 7

8. CRISIS (1) 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 Crisis 2014 © CONNECTED HEALTH RESOURCES 8

9. CRISIS (2) Caregivers need to gather information, including…  Diagnosis or injury details  Disease-specific information  Care options  Next steps Crisis 2014 © CONNECTED HEALTH RESOURCES 9

10. CARE TRANSITION Caregivers may need to gather information about…  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 2014 © CONNECTED HEALTH RESOURCES 10

11. MAINTENANCE Caregivers may need to gather information about…  Long-term care supports  Financial options  Assistive devices  Medication regimens  Respite care  Support groups Maintenance 2014 © CONNECTED HEALTH RESOURCES 11

12. Family Caregivers & Technology Categories of Activities that Technology can Support  Access  Track  Manage  Coordinate  Connect  Learn 2014 © CONNECTED HEALTH RESOURCES 12

13. CRISIS 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 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 2014 © CONNECTED HEALTH RESOURCES 13

14. CARE TRANSITION 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 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 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 2014 © CONNECTED HEALTH RESOURCES 14

15. MAINTENANCE 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 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 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 2014 © CONNECTED HEALTH RESOURCES 15

16. BARRIERS 16

17. USABILITY BARRIERS (1)  Very few tools are designed specifically for family caregivers and their information needs  Family caregivers are not included in usability testing of Health IT tools  Information on the web is not curated and written at a high literacy level 2014 © CONNECTED HEALTH RESOURCES 17

18. USABILITY BARRIERS (2)  Uncoordinated technology (e.g. multiple patient portals) may simply create more silos  Technology is often not applicable to real-life caregiving scenarios and not all caregiving challenges can be solved with technology 2014 © CONNECTED HEALTH RESOURCES 18

19. ACCESSIBILITY BARRIERS (1)  Availability of Health IT tools does not guarantee access to information  It is difficult to obtain and aggregate medical records  Electronic access to your personal health information varies from provider to provider 2014 © CONNECTED HEALTH RESOURCES 19

20. ACCESSIBILITY BARRIERS (2)  Finding time to incorporate new technology into daily routines is often prohibitive  If you do not speak English, neither Health IT nor our healthcare system is accessible 2014 © CONNECTED HEALTH RESOURCES 20

21. BASIC MATH Not equal…  ACCESSIBLE ≠ UNDERSTANDABLE OR USABLE  508 OR 504 COMPLIANT ≠ UNDERSTANDABLE OR USABLE Equal…  PLAIN LANGUAGE/ MULTILINGUAL INFORMATION = UNDERSTANDABLE AND USABLE 2014 © CONNECTED HEALTH RESOURCES 21

22. HEALTH LITERACY (1) Facts:  1 in 3 Americans don’t have the ability to understand and act upon their health information  50M Americans do not speak English at home The language of healthcare is not the language of the average American 2014 © CONNECTED HEALTH RESOURCES 22

23. HEALTH LITERACY (2) Example:  $290 billion spent annually due to poor medication adherence  If patients (and their family caregivers) cannot understand how to take their medications, they are not likely to take them correctly 2014 © CONNECTED HEALTH RESOURCES 23

24. WHERE THESE BARRIERS SHOW UP (1) Family Caregiver Tasks  Care and services coordination  Medical decision making  Medical records gathering  Medication administration  Online information searches  Providing hands-on care 2014 © CONNECTED HEALTH RESOURCES 24

25. WHERE THESE BARRIERS SHOW UP (2) Care Transitions  Lacking or inadequate patient & family education on diagnosis, how to provide care, next steps, how/where to find support  Inability to understand health needs coupled with limited access to social services and community resources 2014 © CONNECTED HEALTH RESOURCES 25

26. OPPORTUNITIES 26

27. OBSERVATIONS FROM THE FIELD (1)  Our dual-eligible citizens are the most costly members of our healthcare system. They WANT to be engaged in their health and care. They CAN use Health IT to help manage their health – but sometimes need others to assist. 2014 © CONNECTED HEALTH RESOURCES 27

28. OBSERVATIONS FROM THE FIELD (2)  Nobody takes the time to engage patients/family caregivers with technology to support their health – especially our older citizens or those who are disabled 2014 © CONNECTED HEALTH RESOURCES 28

29. OBSERVATIONS FROM THE FIELD (3)  Plain language works  Not everyone is comfortable using technology, but they clearly grasp the benefits of having their health information in one place and access to medication information they can understand 2014 © CONNECTED HEALTH RESOURCES 29

30. OBSERVATIONS FROM THE FIELD (4)  Typing is prohibitive for many with physical challenges – which limits their use of technology  Healthcare’s missing links to social services and community supports derail patients and families from achieving their health goals 2014 © CONNECTED HEALTH RESOURCES 30

31. OUR FOCUS SHOULD BE ON… (1)  Providing clinical information in a format that both patients and family caregivers understand  Creating simple tools that allow patients and families to easily aggregate their health and social services information 2014 © CONNECTED HEALTH RESOURCES 31

32. OUR FOCUS SHOULD BE ON… (2)  Including patients and family caregivers of all abilities in the creation and usability testing of Health IT tools  Educating our citizens on how to use Health IT to take command of their health and their health information 2014 © CONNECTED HEALTH RESOURCES 32

33. OUR FOCUS SHOULD BE ON… (3)  Making healthcare and social services easier to understand and actively participate in  Creating a culture of accessible and usable Health IT 2014 © CONNECTED HEALTH RESOURCES 33

34. WE NEED TO STOP…  Using “that’s not scalable” as an excuse for NOT improving the accessibility and usability of Health IT and our healthcare system  Perpetuating the stereotypes associated with the ability of our most vulnerable citizens (and their caregivers) to understand and embrace Health IT 2014 © CONNECTED HEALTH RESOURCES 34

35. CONTACT INFO Email: msterling@sterlinghealthit.com Website: www.connectedhealthresources.com Twitter: @SterlingHIT 2014 © CONNECTED HEALTH RESOURCES 35