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Accessibility and Usability of Health IT Through the Eyes of the Family CaregiverMaryAnne SterlingCo-Founder, Connected Health Resources@SterlingHITSeptember 17, 2015139%According to Pew Research, 39% of adults in the US are caring for someone.295 MillionThat equates to approximately 95M people who ARE the front lines of healthcare.3522 BillionAnd the cost of informal caregiving just for U.S. elderly, according to RAND, equates to 522B dollars in uncompensated care per year. 4Needs5So what do family caregivers need?5Information Needs

AllergiesTransportationInsurance MedicationsAssisted LivingDiagnosis HospiceDiseasesImmunizationsAppointmentsDoctorsCare PlanSupport GroupTreatmentMedical EquipmentSpecialistsTest ResultsADLs

Home SafetyMedicaidRespite CareFinancial ChoicesAdvocacy ServicesRehabMeals-on-wheelsMedicareMental HealthAdvanced DirectiveHome HealthSenior CenterVisiting Nurse

Social WorkersAssistive DevicesNursing HomeHealth History

2014 Connected Health Resources6Information. There is a complex array of healthcare, social services, insurance and legal information that we have to assimilate in order to support our loved ones. I purposefully made this slide very busy. The photos represent a variety of caregiving situations and the words illustrate the maze of topics that caregivers have to be familiar with to navigate our healthcare and social services systems.6Caregiving Information Cycle2014 Connected Health Resources7A couple of years ago, I began thinking about how to explain my information needs to my colleagues in Health IT, who didnt quite understand the challenges of caring for aging parents. So, I created something I call the Caregiving Information Cycle. My intent was to show that caregiving is not linear, its not static, its always changing.

Typically, a caregiver is either: dealing with a crisis, assisting a loved one through a care transition, or in maintenance mode and we may experience each phase of this Cycle many times over the course of our caregiving journey.

We need different information at different points in time, depending on the phase of caregiving we find ourselves in. 7Crisis (1)Caregivers may need to provide patient information to healthcare professionals, includingAllergies and health historyFamily health historyImmunizations Test results/labs/filmsHealth insurance

Crisis2014 Connected Health Resources8In my world, a crisis is an accident, injury, or new diagnosis. Every time I accompany my mom to the emergency room, I find myself reciting the same things over and over: her allergies, health history, insurance information, has she had a flu shot?

8Crisis (2)Caregivers need to gather information, includingDiagnosis or injury detailsDisease-specific informationCare optionsNext steps

Crisis2014 Connected Health Resources9But Im also gathering information on-the-fly: whats the diagnosis? What options do we have for treatment? What are my next steps? 9Care TransitionCaregivers may need to gather information aboutThe patients 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 activitiesMedical equipmentCare Transition2014 Connected Health Resources10Care transition refers to a new care setting or new phase of recovery/illness. This is where I need a new plan. This may include a different housing situation like rehab -- thats only temporary. It might mean I need to explore options for transportation for my mom to her follow-up appointments. Or perhaps a hospital bed or walker.

10MaintenanceCaregivers may need to gather information about

Long-term care supportsFinancial optionsAssistive devicesMedication regimensRespite careSupport groups

Maintenance2014 Connected Health Resources11Maintenance refers to a chronic condition or permanent disability. This is where we are honing medication regimens, seeking respite from caregiving, exploring financial options, and learning from other caregivers in a support group.

So, the Caregiving Information Cycle was the first step in explaining what information the family caregiver needs and when.

11Family Caregivers & TechnologyCategories of Activities that Technology can Support

AccessTrackManageCoordinateConnectLearn2014 Connected Health Resources12Then I decided it was time to map these information needs to technology. The categories that naturally fell into place were Access, Track, Manage, Coordinate, Connect, and Learn.

Finally, I connected the dots between technology and the phases of the Caregiving Information Cycle. Lets take a closer look!

12CrisisCrisisCategoryInformation NeededAccessallergies, family health history, medical records, test results, medication lists, insurance statements/bills, legal documents such as healthcare proxyTrackimmunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient locationManagemedication administration, refills, care plans, insurance, and financesCoordinatedoctor appointments and referrals, in-home care and services, other family caregivers, transportation, meals-on-wheels, medical equipmentConnectwith other caregivers, providers, family members, friends, and support groupsLearnabout a diagnosis, disease, treatment, or the latest research; community supports, social services, and housing options2014 Connected Health Resources13During a crisis, family caregivers may need to access allergies, family health history, medication lists, and legal documents. They may need to connect with family members, and learn about a diagnosis or disease.

13Care TransitionCare TransitionCategoryInformation NeededAccessallergies, family health history, medical records, test results, medication lists, insurance statements/bills, legal documents such as healthcare proxyTrackimmunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient locationManagemedication administration, refills, care plans, insurance, and financesCoordinatedoctor appointments and referrals, in-home care and services, other family caregivers, transportation, meals-on-wheels, medical equipmentConnectwith other caregivers, providers, family members, friends, and support groupsLearnabout a diagnosis, disease, treatment, or the latest research; community supports, social services, and housing options2014 Connected Health Resources14During care transition, we may need to access medical records, manage insurance and care plans, coordinate in-home care and services, transportation, and medical equipment, connect with providers, and learn about a particular treatment, community supports, and housing options.

14MaintenanceMaintenanceCategoryInformation NeededAccessallergies, family health history, medical records, test results, medication lists, insurance statements/bills, legal documents such as healthcare proxyTrackimmunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient locationManagemedication administration, refills, care plans, insurance, and financesCoordinatedoctor appointments and referrals, in-home care and services, other family caregivers, transportation, meals-on-wheels, medical equipmentConnectwith other caregivers, providers, family members, friends, and support groupsLearnabout a diagnosis, disease, treatment, or the latest research; community supports, social services, and housing options2014 Connected Health Resources15During maintenance, we may need to access test results and insurance statements, track a patients blood sugar or weight, manage medication administration and refills, along with finances, coordinate doctor appointments and referrals, connect with other caregivers and support groups, and learn about the latest research on a particular course of treatment or social services that the patient may qualify for.

15Barriers16Now that we have an information framework, lets talk about barriers.16Usability Barriers (1)Very few tools are designed specifically for family caregivers and their information needsFamily caregivers are not included in usability testing of Health IT toolsInformation on the web is not curated and written at a high literacy level2014 Connected Health Resources17When it comes to usability, we lack Health IT tools that capture the needs of family caregivers, who are not included in the usability testing of anything.To complicate matters, there is a wealth of health information on the web today, but that information is not curated and requires a high level of health literacy to comprehend.17Usability Barriers (2)Uncoordinated technology (e.g. multiple patient portals) may simply create more silosTechnology is often not applicable to real-life caregiving scenarios and not all caregiving challenges can be solved with technology2014 Connected Health Resources18Im going to pick on patient portals because they are neither user-friendly, nor interoperable with anything else on the planet. And frankly, there is not an app that can solve the majority of caregiving challenges.18Accessibility Barriers (1)Availability of Health IT tools does not guarantee access to informationIt is difficult to obtain and aggregate medical recordsElectronic access to your personal health information varies from provider to provider

2014 Connected Health Resources19Access to information is still a problem. Just because you have access to Health IT does not mean that you have access to information AND just because you are using an app to track your own health does not mean that your doctor has the ability to receive, analyze, respond, and store the data that you have generated.19Accessibility Barriers (2)Finding time to incorporate new technology into daily routines is often prohibitiveIf you do not speak English, neither Health IT nor our healthcare system is accessible

2014 Connected Health Resources20It is often very difficult to incorporate new technology into a family caregivers daily routine, where spare time is non-existent. And I want to emphasize that neither Health IT nor our healthcare system is accessible if you do not speak fluent English. 20Basic MathNot equalAccessible Understandable or usable508 or 504 Compliant understandable or Usable

Equal Plain language/ multilingual Information = Understandable and Usable

2014 Connected Health Resources21Since our host today is the Department of Education, I thought a little math would be appropriate! Just because information is accessible, that does NOT mean that it is understandable or usable. I use the same equation when it comes to 508 and 504 compliance. It is not until we begin to embrace plain language and language-of-choice, along with 508 and 504 compliance, do we have information that is understandable and usable.21Health Literacy (1)Facts:1 in 3 Americans dont 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 American2014 Connected Health Resources22Of the foundational issues that are currently preventing us from transforming healthcare, low health literacy is perhaps the biggest. The language of healthcare is NOT the language of the average American.22Health Literacy (2)Example:$290 billion spent annually due to poor medication adherenceIf patients (and their family caregivers) cannot understand how to take their medications, they are not likely to take them correctly

2014 Connected Health Resources23If people do not understand how to take their medications, we will continue to spend 290B dollars a year on issues resulting from poor medication adherence.23Where These Barriers Show Up (1)Family Caregiver TasksCare and services coordinationMedical decision makingMedical records gatheringMedication administrationOnline information searchesProviding hands-on care

2014 Connected Health Resources24These barriers show up when family caregivers are trying to complete the tasks they do every day like coordinating care and services, gathering information, and administering medications.24Where These Barriers Show Up (2)Care TransitionsLacking or inadequate patient & family education on diagnosis, how to provide care, next steps, how/where to find supportInability to understand health needs coupled with limited access to social services and community resources

2014 Connected Health Resources25These barriers show up during care transitions when family caregivers are trying to navigate our healthcare and social services systems.25Opportunities26As we begin to look at opportunities26Observations 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 Resources27I want to highlight a few observations from our pilot project in Montgomery County, Maryland, where we are providing tools and technology to a residence for low-income seniors and the disabled, along with their family caregivers. First and foremost, these folks WANT to be engaged in their health. They CAN use Health IT, with a little assistance.

27Observations 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 Resources28Until now, nobody has taken the time to introduce Health IT to them and help them use it to benefit their health.28Observations From the Field (3)Plain language worksNot 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 Resources29Plain language works! One more time: plain language works! And while everyone may not be comfortable using technology, they are thrilled to have access to information they can understand.29Observations From the Field (4)Typing is prohibitive for many with physical challenges which limits their use of technologyHealthcares missing links to social services and community supports derail patients and families from achieving their health goals

2014 Connected Health Resources30On a mechanical note, typing is the nemesis of many of the folks we work with. But thats ok, because we are honored to type for them. Their other nemesis is the fact that healthcare operates in its own silo so they may not know about services that are available to help them remain independent.30Our Focus Should Be On (1)Providing clinical information in a format that both patients and family caregivers understandCreating simple tools that allow patients and families to easily aggregate their health and social services information

2014 Connected Health Resources31What should our focus be as we move forward? Without question: providing clinical information in a format that patients and family caregivers can understand. Also, creating simple tools that allow patients and caregivers to easily aggregate health and social services information.31Our Focus Should Be On (2)Including patients and family caregivers of all abilities in the creation and usability testing of Health IT toolsEducating our citizens on how to use Health IT to take command of their health and their health information

2014 Connected Health Resources32We must include patients and family caregivers in the creation of Health IT tools. And go back to complete a task that we somehow forgot about: educating people on how to use Health IT to take command of their health and their health information.32Our Focus Should Be On (3) Making healthcare and social services easier to understand and actively participate inCreating a culture of accessible and usable Health IT

2014 Connected Health Resources33We need to break down the healthcare and social services silos. This does not have to be so complicated. And we need to make a culture of accessible and usable Health IT part of the fabric of healthcare as commonplace as the thermometer or stethoscope.

33We need to StopUsing thats 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 Resources34There are also things that we need to STOP doingExcuses like thats not scalable are no longer acceptable. We face complex issues in making Health IT accessible and usable and these require complex solutions. Clearly, we need to abolish stereotypes that exist when it comes to the ability of our most vulnerable citizens to understand and embrace Health IT.34Contact Info

Email: msterling@sterlinghealthit.comWebsite: www.connectedhealthresources.comTwitter: @SterlingHIT2014 Connected Health Resources35Thank you and please feel free to contact me via one of these avenues.35