families, caregivers and health information technology 20141020
DESCRIPTION
Family Caregivers and Health Information TechnologyTRANSCRIPT
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Danny van Leeuwen, RN, MPH, CPHQVice President, Quality [email protected] www.health-hats.com
Mary Fam, MBAQuality Management Data [email protected]
Families, Caregivers and
Health Information Technology
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93,000,000
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4Caregiver’s Employer
Interpret Discharge Instructions
Interpret Medication Labels/Administer Meds
Identify Patient Risk Signs
Balance Absence from Work/Impact on Job Performance
Health Plan
Manage Health Insurance Issues
Hospital
Physicians
Communicate with Clinicians
Health Monitoring
Obtain Test Results
Medical Records
Find Providers and Services/Make Appts
Medical Information
Pharmacy
What does this mean?
Where do we get help?Caregiver
Patient
Caregiver Landscape
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People at the
Center of Care
• Individuals• Consumers• Patients• Guardians• Friends• Family• Network
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School
Info, Advocacy, Leadership
Recreation, Community
Legal, Financial
Support
Health
Caregiver’s Mapwww.durgastoolbox.com
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People at the
Center of Care
Want and Need
1. Quality of Life2. A Reliable and
Effective Team3. Common goals4. The same
information in the hands of the entire team that they can understand
5. Affordable and accessible care
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Quality of Life
• Quality of life for the whole team
• Control of their life – Real choices
• Peace of mind• Rest - A break• Treated respectfully• Recognized and
appreciated• Relief from pain and
worry • Reduction
in controllable stress• Connection to others -
not alone
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Health Team
• Support that works• Members -
professional and lay people
• How to reach them • Ability to reach them• Helpfulness – for
what?• Treated with Respect
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Common Goals and
Plans
• Common goals for the health journey
• Developed with the person at the center
• Known by the entire health team
• Plans to attain those goals
• Progress and challenges attaining
• An understanding of real and potential risks • A plan of how to manage
those risks when they occur
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The same information in the hands of the entire team that they can
understand
• Current medications and treatments, – Intended Schedule–Actual schedule–How affects the taker
• History of medications and treatments–What worked–What didn't–For what symptoms /
challenges
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Information:Schedule of events past and future
–Procedures, –Hospitalizations, –Diagnoses, –Appointments
• Date and time• Tips, instructions, • Directions and Accessibility
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Affordable and
Accessible Care
• What will it cost?• Who pays?• What will it cost us?• Who will bill us?• Who will accept our
payment and respect us?
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Technology as an Enabler
Today’s Challenges
• Few tools designed specifically for family caregivers
• Caregiver knowledge of available tools
• Applicability of technology to real-life caregiving scenarios
• Finding time to incorporate new technology into daily routines
• Availability of tools does not guarantee access to information
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Family Caregive
r as a Partner Today’s
Challenges
• Lack of recognition of the family caregiver role and its importance
• Absence of dialogue between providers and the family caregiver
• Lack of training/education to familiarize the family caregiver with next steps in recovery or how to perform caregiving tasks
• Use of complex medical terminology that nobody is willing to translate into “normal-human-speak”
• Misinterpretation of HIPAA impeding family caregiver support for a loved one
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Categories of Family Caregiver
Technology Needs
• Access: family health history, medical records, test results, medication lists, insurance statements/bills
• Track: immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location
• Manage: medication administration, refills, and care plans
• Coordinate: doctor appointments and referrals, in-home care and services, other family caregivers
• Connect: with other caregivers, providers, family members, and friends
• Learn: about a diagnosis, disease, treatment, or the latest research
Access Track Manage Coordinate Connect Learn
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Care Giving
Information Cycle
Crisis• Accident/
injury• New
Diagnosis
Care Transitio
n
• New Care Setting
• New Phase of Recovery/Illness
Maintenance
• Chronic Condition
• Permanent Disability
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• Access: family health history, medical records, test results, medication lists, insurance statements/bills
• Track: immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location
• Manage: medication administration, refills, and care plans
• Coordinate: doctor appointments and referrals, in-home care and services, other family caregivers
• Connect: with other caregivers, providers, family members, and friends
• Learn: about a diagnosis, disease, treatment, or the latest research
Crisis
•Accident/injury•New Diagnosis
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• Access: family health history, medical records, test results, medication lists, insurance statements/bills
• Track: immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location
• Manage: medication administration, refills, and care plans
• Coordinate: doctor appointments and referrals, in-home care and services, other family caregivers
• Connect: with other caregivers, providers, family members, and friends
• Learn: about a diagnosis, disease, treatment, or the latest research
Care Transiti
on
•New Care Setting
•New Phase of Recovery/Illness
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• Access: family health history, medical records, test results, medication lists, insurance statements/bills
• Track: immunizations, vital signs, blood sugar, weight, food intake, mood, rest, patient location
• Manage: medication administration, refills, and care plans
• Coordinate: doctor appointments and referrals, in-home care and services, other family caregivers
• Connect: with other caregivers, providers, family members, and friends
• Learn: about a diagnosis, disease, treatment, or the latest research
Maintenance
•Chronic Condition•Permanent Disability
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Environmental Scan
• Access: personal health records, patient portals
• Track: wireless sensors, i.e. mats in the bathroom and kitchen that indicate if mom has fallen; GPS safety devices, health and exercise apps
• Manage: medication reminders, devices that determine whether or not patient has taken their medication (and provide the correct dose), care planning tools
• Coordinate: online appointment scheduling, apps to help coordinate multiple family caregivers
• Connect: on-line support communities, secure email
• Learn: countless health and medical information sources, blogs
Examples of tools available today in each category…
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Social Media
• Twitter• Facebook• LinkedIn
Connect
Learn
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Blog• https://wordpress.com/ • https://svbtle.com/• https://ghost.org/• http://wardrobecms.com/ • http://postach.io/ • https://medium.com/ • https://roon.io/
Connect
Learn
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Journaling
• Record the health journey experience:
• Where you started, what you dealt with, how you felt, who you met, what worked, what didn't.
• Try Day One Journaling - Apple
Coordinate
Connect
Learn
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Logistics• Balance
(for Alzheimer's caregivers)• Caregiver's Touch• CareZone
Coordinate
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Electronic Health Record
• https://www.practicefusion.com/signup/
• http://www.myopennotes.org/
Access
Track Manage Coordinate Connect Learn
Blue Button• http://healthit.gov/patients-fami
lies/blue-button/about-blue-button
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HIPAA: Access Rights / Privacy Rights
• http://healthit.gov/patients-families/protecting-your-privacy-security
Access
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End-of-Life
• Practitioner Orders for Life-Sustaining Treatment (POLST) in MA
• MOLST (Medical Orders for Life-Sustaining Treatment) in some states.
• In Massachusetts POLST here. • In California, it's here. • A map with state-by-state links
is here.
Learn
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Personal Health Data
• Glucose Buddy - Diabetes Logbook Manager w/syncing, Blood Pressure, Weight Tracking
• Blood Pressure Monitor - Family Lite
• HIV Testing Sites & Care Services Locator
• Lab Tests Online
Track Manage
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Behavioral Health Apps
• DSM-5 Diagnostic Criteria by American Psychiatric Association
• Big White Wall• T2 Mood Tracker
Track
Manage
Connect
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33Copyright © 2014 KGA, All rights reserved.
• http://www.kgreer.com/Top10Apps/
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Remote Monitoring
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Communication Translation
• http://touch-voice.com/ $24• https://
itunes.apple.com/us/app/onevoice-aac/id412448074?mt=8 $200
• Proloquo2Go $220
Access Track Mana
geCoordinat
eConne
ct Learn
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My wife, has been diagnosed with Frontal Temporal Dementia. She has very regressive mobility and speech issues. We have provided her with an IPAD which we are both learning to use. I would have to say that my largest challenge – thus far - as a care giver has to do with getting my wife, Diane, on Medicaid. It has been a very tedious process which required hiring a lawyer to go through the maze of paper work and regulation.
Obviously, the next largest family challenge – as it is with all families facing this challenge - is to stay ahead of the curve. As the disease regression continues, our primary family goal is to keep her in her home surroundings.
My wife is a very private person and never liked to have pictures taken of her – although she is a very beautiful person.
Diane
Access
Manage Coordinate Conne
ct Learn
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Every Friday at 7pm the health team had a conference call to check in with everyone, deal with issues of death, dying, care coordination, life…. We were so spread out. We created a Terence and Caesar Yahoo group (Terence the lung tumor and Caesar the brain tumor. Mike named ‘em)
Danny’s Son
Manage Coordinate
Connect
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I use spreadsheets to keep
track of everything
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Stan’s Family
“…sometimes I had difficulty convincing my Mom's doctors/nurses that I need to accompany her on all her appointments due to her limited English proficiency.”
Access
Coordinate
Connect
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Sarah’s Family
“…our biggest challenge was when the Neurologist gave us the diagnosis and walked out of the room telling, as an after thought, to make an appointment for another test that afternoon. I was in shock. I did not know whether to start crying or screaming. My children were young and I was pretty sure that would be Ernie's last day of work. I felt afraid and terribly alone. There were no words of encouragement about gleaning help or time for asking questions and getting answers about Alzheimer's disease.”
Access Coordinate Connect Learn
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For the Medical TeamHealthcare is a Team Sport
What• Include family
caregivers as key members of the person’s care teamHow
• Allow the person to identify their active family/friend caregiver. This is the individual they rely on to help sort out health related issues.
• Begin a dialogue with the caregiver• Enable them to reach you via
secure messaging• Make sure they are comfortable
with the care they are being asked to provide
• Refer them to resources in the community and online that can help support them as caregivers
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For the Medical Team Include the Family Caregiver
in the Conversation
• Listen• Educat
e• Train
What
How• Pay attention to the information
they have to share• Add their observations to the
person’s medical record• Make them aware of tools such
as patient portals, Blue Button, online resources and support communities
• Assist them in navigating the next steps in care
• Provide hands-on training for any medical tasks they will be performingLET Family Caregivers Help…
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Help Change
Attitudes
• Make it everyone’s responsibility to assist the family caregiver in coordinating both healthcare and support services
What How
• Raise awareness with your staff
• Establish key person(s) within your organization to take the lead in a caregiver initiative
• Actively engage and partner with local organizations who can assist family caregivers
• Be proactive: learn about new technologies (including mobile apps) that can support family caregivers
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“…the inability to get access to information I need to manage my mother’s low sodium, specifically inability to get lab results electronically and in a timely manner…”
Kathy’s Family
Access Track Manage Coordinate
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Gail’s Family“One daughter, far away.One caregiver close at hand.One mother lost to Alzheimer’s.Using technology to stitch together the fabric of care.”
“I lived far away, and Barbara was my lifeline. She did the day to day caregiving and I used technology to save time chasing down answers from doctors to share with her, making my visits more about visiting my mom and less about managing care.”
Access
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“A few years ago, we cared for my mother, who was in an apartment across the street from my music store. We couldn't leave her alone because of Alzheimer's, but after she went to bed I had a wireless baby monitor system that allowed me to see if she got up. I could watch from my instrument repair workbench across the street and get my work done...”
The Mazza Family
Track
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“We use email with home health care providers so she has a steady team of companion caregivers.”
The Connors Family
Coordinate
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“We communicated via the internet to keep everyone up-to-date”
Connect
Danny’s Grandson
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“So while the (hip replacement) surgery and recovery went very well, it certainly could have been a much smoother, more informed process. I did spend time on the web looking up reactions to drugs, finding supply companies for stockings, etc.”
The Hultz Donahue Family
Learn
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What Haven’t
We Covered?
• Quality of Life• Personal Risk
Management• Understanding
Someone Else’s Experience
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Reality Check
• Technology is an enabler but not enough. Family caregivers need access to a trained navigator or guide who speaks in the same way they do
• Widespread adoption of existing family caregiver tech, i.e. personal health records, is painfully slow
• Information on the web is not curated and high literacy level
• Electronic access to your health data is spotty
• Connectivity/monitoring does not imply “action”
• Patient (and Caregiver) Generated Health Data not widely accepted and no framework exists for receipt/review/response
Not all caregiving challenges can be solved with technology…
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Let’s Start Here
• Care Navigator (human) to support caregiver because data does not mean action and technology does not mean connected care
• Secure messaging with patient’s providers
• Electronic access to patient’s medical records and test results
• Blue Button capability across providers so we can aggregate these records into one place
• Widespread use of *affordable* sensor technology and remote monitoring
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And Aspire to Get Here
Caregiver Generated Health Data (CGHD)…
CGHD via cell/smart phone or Google Glass
Triggers clinical workflow
Results in clinical intervention
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People and
Process as the Glue
Today’s Challenges
• Communication paralysis• Processes that don’t
incorporate the family caregiver
• Lack of care and services coordination
• Near absence of collaboration between providers
• Silo’d resources healthcare, social services, community supports
• Usability of the healthcare system is poor
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“My wife has been diagnosed with Frontal Temporal Dementia. I would have to say that my largest challenge – thus far – as a care giver has to do with getting my wife on Medicaid. It has been a very tedious process which required hiring a lawyer to go through the maze of paperwork and regulation.”
The Conroy Family
Coordinate
Access
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“The idea that mom’s primary care doc, cardiologist, and pharmacy are even close to working as a team and exchanging information to improve her healthcare is a work of fiction. Frankly, I would be happy if these three critical components of her healthcare ecosystem would simply exchange phone numbers!”
MaryAnne’s Family
Coordinate
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Technology Needs a
Little Help…
…from a re-aligned health workforce• Patient educators• Navigators• Local care and services
coordinators• Care managers
…to re-engineered workflows• Capture of family caregiver
information• Seamlessly coordinated care• Alignment of all aspects of care
(including social services and community supports)
• Collaboration with the community
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Redefine Care Coordination
Healthcare
Community Supports
Social Services
Family Caregiver definition of “care coordination”:
• Coordinating care across providers is only the beginning!
• Social services and community supports are often more important to both the patient and the family (meals, respite care, transportation)
• These components must work seamlessly together
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Break Down Care
Coordination Silos What
• Align community supports and social services with healthcare
How• Identify care coordination
champions in your organization
• Actively engage and partner with local organizations who can assist family caregivers, i.e. Area Agencies on Aging, ADRCs, Alzheimer’s Assn, Autism Speaks, faith-based groups, social services, adult day centers…
• Take advantage of the knowledge of your existing partners in home health or long-term care about local service providers
• Assist family caregivers in finding resources in the community that can help support them
Healthcare
Community Supports
Social Services
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Do
• Include family caregivers as key members of the care team
• Capture the family caregiver’s name and role in caring for the patient in the medical record
• Talk with family caregivers about consent and other hurdles to being in the information loop
• Listen, Educate, Train• Make it everyone’s responsibility to assist
the family caregiver in coordinating healthcare and support services
• Break down care coordination silos by aligning community supports and social services with healthcare
• Help family caregivers navigate Web and mobile resources
• Encourage family caregivers to ask questions and share information
• Treat the family caregiver as a partner and the patient/family caregiver as a team
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Don’t
• Don't ignore your most valuable asset in a patient's recovery, treatment and overall health - the family caregiver
• Don't evaluate the intelligence and commitment of the family caregiver by their degrees (or lack of)
• Don't assume that family caregivers know how to navigate the healthcare system on behalf of the patient
• Don't underestimate the relevance of health information that family caregivers have to share
• Don't assume that family caregivers know where to find the resources/services they will need at home to assist in caring for the patient