Danny van Leeuwen, RN, MPH, CPHQVice President, Quality Management
[email protected] www.health-hats.com
Mary Fam, MBAQuality Management Data Analyst
Families, Caregivers and Health Information
Technology
www.AdvocatesInc.org2
Caregivers
93,000,000Price tag for informal
caregiving
$522 BillionReplace w minimum wage
$221 BillionReplace w Skilled Nursing
$642 BillionAnnual LTC cost
$211 Billion
Amazing
Numbers
Pew ResearchRAND Corp
www.AdvocatesInc.org3
ROADMAP•Who are Caregivers•Caregiver wants and needs•Caregiver challenges•Health information Cycle•Apps and web sites•Caregiver experience•What to do next
www.AdvocatesInc.org5
People at the
Center of Care
• Individuals• Consumers• Patients• Clients• Persons
Supported• Guardians• Friends• Family• Network
6
School
Info, Advocacy, Leadership
Recreation, Community
Legal, Financial
Support
Health
Caregiver’s Mapwww.durgastoolbox.com
www.AdvocatesInc.org7
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
www.AdvocatesInc.org8
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
www.AdvocatesInc.org9
Reliable and
Effective Health Team
• Support that works• Professional and
Lay Members -o How to reach them o Ability to reach
themo Helpfulness – for
what?o Understand each
others’ roleso 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
www.AdvocatesInc.org12
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?
• What can I expect from my Health Plan?–What benefits
included?
www.AdvocatesInc.org14
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
Communication crosses all categories
www.AdvocatesInc.org15
Today’s Challeng
esTechnology
as an Enabler
• 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
www.AdvocatesInc.org16
I use spreadsheets to keep
track of everything
Access Track Manage Coordinate Connect Learn
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“We use email with home health care providers so she has a steady team of companion caregivers.”
The Connors Family
Access Track Manage Coordinate Connect Learn
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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
Access Track Manage Coordinate Connect Learn
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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 Track Manage Coordinate Connect Learn
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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
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Today’s Challenge
sFamily
Caregiver as a Partner
• Lack of recognition in the medical world of the family caregiver role and its importance
• Absence of dialogue between medical 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
• Over-rely & Under-rely on caregiver
www.AdvocatesInc.org22
Care Giving
Information Cycle
Crisis• Accident/injury
• New Diagnosis
Care Transitio
n
• New Care Setting
• New Phase of Recovery/Illness
Maintenan
ce
• Chronic Condition
• Permanent Disability
www.AdvocatesInc.org23
• 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
www.AdvocatesInc.org24
• 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
www.AdvocatesInc.org25
• 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, telehealth
• Learn: countless health and medical information sources, blogs
Examples of tools available today in each category…
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Search
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Social Media
• Twitter#caregivers#s4pm#epatient
• Facebook• LinkedIn
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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/
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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
Learn
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Logistics
• Balance (for Alzheimer's caregivers)
• Caregiver's Touch• CareZone• Making Care Easier• CareSync Healthcare
Community
Supports
Social Services
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Electronic Health Record
https://www.practicefusion.com/signup/ http://www.myopennotes.org/
Information Exchange
Blue Button Mass Hiway
• Portals – Access, secure messaging
• People at the Center entering data
• Multiple portals• Open Notes
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Transition of Care
Summary Data
Common Meaningful Use Data Set
• Patient name• Sex• Date of birth• Race • Ethnicity • Preferred language• Care team member(s)• Medications• Medication allergies• Care plan • Problems • Laboratory test(s) • Laboratory
value(s)/result(s) • Procedures • Smoking status • Vital signs
Criterion-Specific Data
Requirements• Provider Name &
Office Contact Information (Ambulatory Only)
• Reason for Referral (Ambulatory Only)
• Encounter Diagnoses
• Cognitive Status• Functional Status• Discharge
Instructions (Inpatient Only)
• Immunizations
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HIPAA: Access Rights / Privacy Rights
Protecting Privacy – SecurityHIPAA Privacy Rule
HIPAA has always provided individuals with the right to access and obtain copies of health information maintained in provider or health plan records.
Access Track Manage Coordinate Connect Learn
www.AdvocatesInc.org38
MEDICATION MANAGEME
NT
MedCoach Medication Reminder Med Reminder PillboxieRxmindMe
• Ease of entry• Pill look up• Actual med photo
displayed• Export schedule and
report• Multiple people can review
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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 Track Manage Coordinate Connect 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
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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
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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
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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 Track Manage Coordinate Connect Learn
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Communication
Translation
• http://touch-voice.com/ $24• https://itunes.apple.com/us/a
pp/onevoice-aac/id412448074?mt=8 $200
• Proloquo2Go $220
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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
Access Track Manage Coordinate Connect Learn
www.AdvocatesInc.org46Copyright © 2014 KGA, All rights reserved.
http://www.kgreer.com/Top10Apps/
Behavioral Health Apps
Access Track Manage Coordinate Connect Learn
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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…
www.AdvocatesInc.org49
For Human
Services Provider
• 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
www.AdvocatesInc.org50
For You
• Be sure you know how the individual wants to involve family caregivers
• Talk with family caregivers about consent and other hurdles to being in the information loop
• Ask family caregivers what HIT they use
• Test those Web & mobile resources
• Share what others use & what you find
• Help medical providers include family caregivers as key members of the care team
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Stay Current
• Society for Participatory Medicine
• #caregivers, #epatients
• mHIMSS Roadmap
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