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

msterling@connectedhealthresources.com

@SterlingHIT

Danny van Leeuwen

danny@health-hats.com

@healthhats

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