Supporting Family Caregivers on the Front Lines Through HIT€¦ · Gail Embt @kinergyhealth Regina...
Transcript of Supporting Family Caregivers on the Front Lines Through HIT€¦ · Gail Embt @kinergyhealth Regina...
Supporting Family Caregivers on the Front Lines Through HIT
February 26, 2014
MaryAnne Sterling/Co-founder/Connected Health Resources @SterlingHIT
Danny van Leeuwen/Vice President, Quality Management/Advocates,Inc. @healthhats
DISCLAIMER: The views and opinions expressed in this presentation are those of the author and do not necessarily represent official policy or position of HIMSS.
Conflict of Interest Disclosure
MaryAnne Sterling, CEA
Has no real or apparent conflicts of interest to report.
© 2014 HIMSS
Conflict of Interest Disclosure
Danny van Leeuwen, RN, MPH, CPHQ
Has no real or apparent conflicts of interest to report.
© 2014 HIMSS
Learning Objectives
• Examine where to begin in defining how to incorporate the family caregiver into the patient's care team.
• Discuss how to work with the family caregiver as a partner and incorporate technology into the process.
• Explain how to re-think existing personnel and processes to incorporate support of the family caregiver.
• Identify the do's and don'ts of interacting with the family caregiver.
Agenda
• Family caregiver town hall meeting
• Who are family caregivers?
• Family caregiver as a partner
• Technology as an enabler
• People and process as the glue
• Do's and don'ts of interacting with the family caregiver
Our Biggest Caregiving Challenges…
Gail Embt
@kinergyhealth
Regina Holliday
@ReginaHolliday
MaryAnne Sterling
@SterlingHIT
Danny van Leeuwen
@healthhats
93,000,000
Caregiver’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
Family Caregiver 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
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.”
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.”
What
• Include family caregivers as key members of the patient’s care team
How
• Allow the patient 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
Healthcare is a Team Sport
What
•Listen
•Educate
•Train
How
• Pay attention to the information they have to share
• Add their observations to the patient’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 performing
Include the Family Caregiver in the Conversation
LET Family Caregivers Help…
What
• Make it everyone’s responsibility to assist the family caregiver in coordinating both healthcare and support services
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
Help Change Attitudes
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
“…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
Caregiving Information Cycle
Crisis • Accident/injury
• New Diagnosis
Care Transition
• New Care Setting
• New Phase of Recovery/Illness
Maintenance
• Chronic Condition
• Permanent Disability
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
• 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
• 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 Transition
• New Care Setting
• New Phase of Recovery/Illness
• 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
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…
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
“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
“I even used excel to make a
spreadsheet that helped me fill
up the weekly dispenser in a way
that was more accurate and made
the task faster to do.”
“I use excel to create records that
captured the data I needed over
time, to keep up with all of Dad’s
medications (ordering them,
making sure the prescriptions
were right and up-to-date, and
keeping track of what I gave him)”
The Nelson Family
Manage
“We use email with
home health care
providers so she
has a steady team
of companion
caregivers.”
The Connors Family Coordinate
“We communicated via
the internet to keep
everyone up-to-date”
Connect
Danny’s Family
“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
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…
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
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
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
“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
“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
…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
Technology Needs a Little Help…
What
“Family caregivers should be identified in the individual’s EHR, especially when they are a part of the care plan. With the individual’s permission, family caregivers should have full access to the patients records and care plan.”
--Commission on Long-Term Care Recommendation
How
• Capture the family caregiver’s name and role in caring for the patient
• Make this the first step in developing the patient’s care plan in which the family caregiver is a key contributor and participant
• Participate in Blue Button and help make medical information useable and accessible
Identify the Family Caregiver
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
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
Break Down Care Coordination Silos
Healthcare
Community Supports
Social Services
Do's and Don'ts of Interacting with the Family Caregiver
Do
• Include family caregivers as key members of the patient’s 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 both 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
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
Don’t De-humanize Healthcare
Bottom Line
Family caregivers become your most effective care delivery resource when you LET them.
Questions? Thank You!
MaryAnne Sterling
@SterlingHIT
Danny van Leeuwen
@healthhats
www.health-hats.com - Blog