Families caregivers and health information technology 20141111

Danny van Leeuwen, RN, MPH, CPHQVice President, Quality Management

[email protected] www.health-hats.com

Mary Fam, MBAQuality Management Data Analyst

[email protected]

Families, Caregivers and Health Information

Technology

mailto:[email protected]

http://www.health-hats.com/

mailto:[email protected]

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

http://www.pewresearch.org/

http://www.pewresearch.org/

http://www.rand.org/


ROADMAP•Who are Caregivers•Caregiver wants and needs•Caregiver challenges•Health information Cycle•Apps and web sites•Caregiver experience•What to do next

4


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

http://www.durgastoolbox.com/


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


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


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


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


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


Information:

Schedule of events past and future

–Procedures –Hospitalizations–Diagnoses–Appointments•Date and time• Tips, instructions•Directions and Accessibility


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?


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


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


I use spreadsheets to keep

track of everything



“We use email with home health care providers so she has a steady team of companion caregivers.”

The Connors 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



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.”



“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



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


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








Crisis

•Accident/injury•New Diagnosis








Care Transiti

on

•New Care Setting

•New Phase of Recovery/Illness








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, telehealth

• Learn: countless health and medical information sources, blogs

Examples of tools available today in each category…


Search


http://www.webmd.com/

http://www.mayoclinic.org/

http://www.alz.org/about_us_about_us_.asp

http://aaidd.org/

http://www.namimass.org/

http://www.biama.org/index.html

http://www.autismspeaks.org/resource-guide/state/MA

http://www.massresources.org/senior.html

http://psychcentral.com/


Social Media

• Twitter#caregivers#s4pm#epatient

• Facebook• LinkedIn



Blog

• https://wordpress.com/ • https://svbtle.com/ • https://ghost.org/• http://wardrobecms.com

/ • http://postach.io/ • https://medium.com/ • https://roon.io/


https://wordpress.com/

https://wordpress.com/

https://svbtle.com/

https://svbtle.com/

https://ghost.org/

http://wardrobecms.com/

http://wardrobecms.com/

http://postach.io/

http://postach.io/

https://medium.com/

https://roon.io/

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www.health-hats.com

http://www.health-hats.com/

31

http://durgastoolbox.com/



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Psych Central

http://psychcentral.com/


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


http://dayoneapp.com/

http://dayoneapp.com/


Logistics

• Balance (for Alzheimer's caregivers)

• Caregiver's Touch• CareZone• Making Care Easier• CareSync Healthcare

Community

Supports

Social Services


https://itunes.apple.com/us/app/balance-for-alzheimers-caregivers/id609839752?mt=8

http://www.caregiverstouch.com/calendar-appointments

https://carezone.com/home

https://www.makingcareeasier.com/families

https://caresync.lifedash.com/login?hsCtaTracking=b6284057-11c6-4308-88ae-a6e48fb9b3a1%7C24cfe276-5aeb-4eaa-8722-74749b2abc6a&utm_campaign=CareSync%202.5&_hsenc=p2ANqtz--bqqY5u-Ugt23EGT35-julYPe2sierJp8E3YmGDiYdoLulDS3NnuaS9m-kvNztM5nD2XUehUeMITwHjW4xHMs9wgZznA&utm_content=14795252&utm_source=hs_email&utm_medium=email&_hsmi=14795252


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


https://www.practicefusion.com/signup/

https://www.practicefusion.com/signup/

http://www.myopennotes.org/

http://healthit.gov/patients-families/blue-button/about-blue-button

http://mehi.masstech.org/health-information-exchange-0

http://mehi.masstech.org/health-information-exchange-0


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


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.


http://healthit.gov/patients-families/protecting-your-privacy-security

http://www.hhs.gov/ocr/privacy/hipaa/administrative/privacyrule/index.html


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


https://itunes.apple.com/us/app/medcoach-medication-reminder/id443065594?mt=8

https://itunes.apple.com/us/app/medcoach-medication-reminder/id443065594?mt=8

https://www.cardiosmart.org/Tools/Med-Reminder

https://www.cardiosmart.org/Tools/Med-Reminder

http://pillboxie.tumblr.com/

https://itunes.apple.com/us/app/rxmindme-prescription-medicine/id379864173?mt=8


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.”



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



“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



“…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



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.”



Communication

Translation

• http://touch-voice.com/ $24• https://itunes.apple.com/us/a

pp/onevoice-aac/id412448074?mt=8 $200

• Proloquo2Go $220


http://touch-voice.com/

https://itunes.apple.com/us/app/onevoice-aac/id412448074?mt=8



https://itunes.apple.com/us/app/id308368164?mt=8


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


https://itunes.apple.com/US/app/id294754639?mt=8









http://www.padgadget.com/ipad-app-details/447858911/20/2/1

http://www.padgadget.com/ipad-app-details/447858911/20/2/1

www.AdvocatesInc.org46Copyright © 2014 KGA, All rights reserved.

http://www.kgreer.com/Top10Apps/

Behavioral Health Apps






What Haven’t

We Covered?

• TeleHealth• Personal Risk

Management• Legal Tools


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…


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


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


Stay Current

• Society for Participatory Medicine

• #caregivers, #epatients

• mHIMSS Roadmap

http://participatorymedicine.org/



http://www.himss.org/mobilehealthit/roadmap

Family, Caregivers and Technology

Honor the Caregivers, Help the Helpers