AECS Layout Escorts (Bangalore) 9352852248 Women seeking Men Real Service
Families caregivers and health information technology 20141111
1. Danny van Leeuwen, RN, MPH, CPHQ
Vice President, Quality Management
Dvanleeu@AdvocatesInc.org
www.health-hats.com
Mary Fam, MBA
Quality Management Data Analyst
Mfam@AdvocatesInc.org
Families, Caregivers and
Health Information Technology
2. www.AdvocatesInc.org
2
Caregivers
93,000,000
Price tag for informal caregiving
$522 Billion
Replace w minimum wage
$221 Billion
Replace w Skilled Nursing
$642 Billion
Annual LTC cost
$211 Billion
Amazing
Numbers
Pew Research
RAND Corp
7. www.AdvocatesInc.org
7
People at the
Center of Care
Want and Need
1. Quality of Life
2. A Reliable and Effective
Team
3. Common goals
4. The same information in
the hands of the entire
team that they can
understand
5. Affordable and
accessible care
8. www.AdvocatesInc.org
8
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
10. www.AdvocatesInc.org
10
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
11. www.AdvocatesInc.org
11
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
14. www.AdvocatesInc.org
14
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
15. www.AdvocatesInc.org
15
Today’s
Challenges
Technology 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
17. www.AdvocatesInc.org
17
“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
18. www.AdvocatesInc.org
18
“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
19. www.AdvocatesInc.org
19
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
20. www.AdvocatesInc.org
20
“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
Access Track Manage Coordinate Connect Learn
21. www.AdvocatesInc.org
21
Today’s
Challenges
Family
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
23. www.AdvocatesInc.org
23
• 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
24. www.AdvocatesInc.org
24
• 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
Transitio
n
•New Care Setting
•New Phase of
Recovery/Illness
25. www.AdvocatesInc.org
25
• 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
26. www.AdvocatesInc.org
26
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…
33. www.AdvocatesInc.org
33
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
Access Track Manage Coordinate Connect Learn
36. www.AdvocatesInc.org
36
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
37. www.AdvocatesInc.org
37
HIPAA:
Access Rights /
Privacy Rights
Protecting Privacy – Security
HIPAA 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
39. www.AdvocatesInc.org
39
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
40. www.AdvocatesInc.org
40
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
Access Track Manage Coordinate Connect Learn
41. www.AdvocatesInc.org
41
“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
Access Track Manage Coordinate Connect Learn
42. www.AdvocatesInc.org
42
“…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 Connect Learn
43. www.AdvocatesInc.org
43
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
48. www.AdvocatesInc.org
48
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…
49. www.AdvocatesInc.org
49
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
50. www.AdvocatesInc.org
50
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 thoseWeb & mobile resources
• Share what others use & what you
find
• Help medical providers include family
caregivers as key members of the care
team
I am VP, QM. I have MS. I’m a caregiver, a nurse, a leader, an informaticist, a blogger. I’ve been listening to people at the center for more than 40 years.
This is Mary Fam, Data Analyst, at Advocates
Here’s what I’ve learned
pAccording to Pew Research we have 93,000,000 family caregivers in this country. They are the most underutilized resource in healthcare. And voices that need to be heard. Those without caregivers hardest hit.
The price tag for informal caregiving of elderly people by friends and relatives in the United States comes to $522 billion a year, according to a new RAND Corporation study.
Replacing that care with unskilled paid care at minimum wage would cost $221 billion, while replacing it with skilled nursing care would cost $642 billion annually.
Now that I’ve caught your attention - This presentation will be posted on my web site. Pick up a card with the URL. The ppt will have links. No way for anyone person to know all the sites and tools. It changes so fast. If you know of sites and tools, put it on a card and leave it on your chair or there will be a place on my website to email me and let me know
Who are family caregivers? This is a breakdown of the demographics thanks to our friends at Pew Research. They are your neighbors, your colleagues, your friends, your family.
Three out of five caregivers also are in the labor force. Working-age people under the age of 65 provide 22 billion of those 30 billion caregiving hours, and they often lose income due to reduced work hours.
From a mother of a child on the autism spectrum: back of the napkin
MARY: DOES THIS LOOK FAMILIAR TO YOU?
I have MS. I’m a caregiver, a nurse, a leader, an informaticist, a blogger. I’ve been listening to people at the center for more than 40 years. Here’s what I’ve learned
Federal ONC (Office of National Coordinator) Blue Button initiative Standardized mechanisms and language / code for data exchange. Core information – Content subcommittee
Pain: what works and what doesn’t
Scared: what works and what doesn’t
No traction
Fragmented – one entity doesn’t know or won’t tell what another costs/charges
Now let’s address the technology needs of family caregivers…
We’ve divided them into six categories: Access, Track, Manage, Coordinate, Connect, and Learn.
Tried to rank – can’t Most important: Connect - Not alone, Access Information, Coordinate, Learn
When we align the technology needs with the information cycle, we see the following…
What is technology? Paper and pencil, Telephone, Hearing aid, single use syringe, wheelchair
I love technology. I'm an early adopter. But it takes time to learn technology. My grandson learned to use an iPad at 18 months in 45 minutes with no help from me. Soon after he's sitting on my lap with a laptop trying to swipe across the screen. Opa, broken. So interesting to me that when I asked my followers what technology they used as caregivers the answer was decidedly low tech: spreadsheets, conference calls, social media, google, baby monitors, almost no apps or technology linked to apps. Who has time to learn new technology while getting through the busy day of working and caregiving? Often caregivers reported on the frustration of lack of access to information even if they were comfortable with technology. One college librarian had that frustration.
When I needed a new neurologist, it was easy to scratch someone off the list who didn’t use e-mail. Couldn’t function without it.
Here’s the librarian doing what she knows best – finding information she needs to do her job as caregiver. She spends a growing percentage of her professional time, teaching librarian skills to lay people.
A recurring theme from caregivers we know is shock and desperate aloneness. Technology opens the doors to community.
Imagine the excitement when Larry found an apartment for his mom across from his store with the wireless baby monitor working with audio and video.
I started my nursing career as a Home Health Nurse in 1976. Clearly, family caregivers were partners. I could not do my job in the home without the caregivers. I quickly had to speak in a language we all understood. Then I became a caregiver for my grandmother, then my son, my wife, and my grandson. Now family cares for me. I have MS. When I am recognized as a caregiver by the professional team, ours lives are so much smoother. Now I know to pick members of my professional team that readily and easily include my wife, my sons, and other professionals.
Health care is a tower of Babel. It's the extremely rare person who can translate across every part of health care. As a patient, caregiver, a nurse and a leader. I blog regularly about health care. My readers come from all disciplines and include the array of the health team. I struggle every week to be sure my writing is understandable to all. I'm fair at it. Every part of health care is a mystery to someone. Doctors often don't understand the language or culture of their patients. Caregivers often don't really understand the person at the center of care even if they love them. Who really understands another's pain? People in one profession often don't understand other professions. Who understands the wonks? Who understands forms and paperwork of insurance companies. Busy people don't have time to understand each other, nor do they have time to learn new technology.
We’re going to address information first, then move to technology, and then connect the two.
Family caregivers may need different information at different points in time, specific to the phase of caregiving they are in. For example: a caregiver may be dealing with a crisis, assisting a loved one through a care transition, or in maintenance mode -- just trying to navigate day-to-day challenges. We may find ourselves in each phase many times over the course of our caregiving experience.
I’ve described this as the Caregiving Information Cycle.
A crisis could be… an accident, injury, or new diagnosis.
Care transition refers to… a new care setting or new phase of recovery/illness.
Maintenance describes… a chronic condition or permanent disability.
During a CRISIS, family caregivers may need to ACCESS family health history, test results, and medication lists. They may need to CONNECT with family members, and LEARN about a diagnosis or disease.
During CARE TRANSITION, family caregivers may need to ACCESS medical records, MANAGE medication administration and care plans, COORDINATE in-home care and services, CONNECT with providers, and LEARN about a particular treatment.
During MAINTENANCE, family caregivers may need to TRACK a patient’s blood sugar or weight, MANAGE refills, COORDINATE doctor appointments and referrals, CONNECT with other caregivers, and LEARN about the latest research on a particular course of treatment.
We did a quick environmental scan to give you an idea of the tools that are available today in each category…
They range from patient portals to wireless sensors, to devices that determine whether or not a patient has taken their medication, to online appointment scheduling and support communities. We now have countless sources of health and medical information online.
We can’t exhaustively review all examples of HIT for family caregivers in this session. We’ll quickly look at a few. If you know of others, let us know on the cards or let me know on the link we’ve provided to find this presentation
highlight some of the family caregivers that we know and how they use technology to Access, Track, Manage, Coordinate, Connect, and Learn. It may surprise you!
Expertise –My grandson knows about dinosaurs. Herbivore-vegetarian. Expertise is relative – someone who has a 15 minute advantage on you. Vet, trust. Who do you read? Put it on the card and we will share.
So many tools for searching. Just last week a librarian told me that Google/Bing were very weak search engines. I have an email out to her to point me in a better direction.
Twitter can be like drinking dirty water from a fire hose if you’re not careful. I control my Twitter experience finding the hash-tags (#) that connect me to communities that interest me such as #caregivers, #ptexp (patient experience) #epatient, #s4pm (Society for Participatory Medicine), #bcsm (breast cancer social media), #healthliteracy. See what I mean?
On the other hand there are some amazing threads and virtual chats out there. Can you find some from the families you work, explore them and with share with others.
There are many dedicated people, advocates, caregivers, clinicians who blog regularly. They are experts.
I spoke with someone facing increased symptoms also receiving more and more friendly, loving advice about treating those symptoms from professionals, friends and acquaintances. For the person at the center of care, jot down symptoms, what makes it better, what makes it worse, what you tried, what was suggested that you didn’t try, what would you like to try?
Remember Durga’s Toolbox and her caremap. Care coordination, in the eyes of the family caregiver, happens at the intersection of healthcare, social services, and community supports. Without all 3 components working in concert, our jobs become much more difficult, if not impossible.
Calendar, emergency, insurance, legal and financial, medical history
Caregiver’s Touch: $4.99 app, $19.95 /month.
CareSync $19/month, more to get help importing records
MakingCareEasier free. Calendar, emergency plan, lists, care plans, document notes
Balance $.99 app
How can family caregivers access electronic health information of the person they support? Today, I'm with my 87-year old mother. I had her show me the portal she uses at the system where she gets most of her medical care. She wants me to have access to her medical record and wants me to be able to communicate with her doctors as she does. However, the site clearly says that unless the patient is a child under 11 years old that she can't give me my own access to her account for technical and privacy reasons. So she gave me her login and password. This lack of direct access for primary caregivers is the norm. It's NOT a privacy issue if the person give permission. It's a technical issue that has long been solved by Children's Hospitals trying to give access, some full access, some limited access, to parents and guardians of teens and children with blended and disputing parents. Rather it's a matter of will and priorities. Some independent electronic health records, such as Practice Fusion, have mechanisms for primary caregivers to be granted access with permission. Also those health systems involved in the OpenNotes initiative - Beth Israel in Boston, Geisinger, Harborview in Seattle, are exploring giving primary caregivers access to physician's' progress notes. Give us our data!!
How can EHR be used?
Meaningful use is using certified electronic health record (EHR) technology to: Improve quality, safety, efficiency, and reduce health disparities. Engage patients and family. Improve care coordination, and population and public health.
Here’s where I’ve tested apps: none were perfect. From not intuitive, to sort of intuitive
Again antidote to aloneness and connection to community – families, networks, resources.
Over the years, the majority of the issues I’ve experienced as a family caregiver revolve around people and process. The inability of healthcare, social services, and community supports to work together has brought our family to it’s knees on several occasions.
MaryAnne spent 5 months of 2013 navigating the treacherous Medicaid eligibility process on behalf of my 83-yr-old mother so that she could move to the next level of care. This process involves endless paper; countless federal, state, and local agencies that don’t communicate; and (in our case) 3 interventions by our Congressman to move administrative roadblocks placed in our path.
Further, the example that I’ve highlighted on this slide showcases a complete breakdown in communication between mom’s primary care doc and pharmacy that nearly resulted in tragic consequences. Her pharmacy could not refill critical medications, including heart medication, for almost a week -- until those meds were re-authorized by her primary care doc who was completely non-responsive to any and all communication.
These shortcomings in people and process are clearly unacceptable.
One of the benefits of changes to HIPAA and the proliferation of Health Information Highways is electronic access to lab data. MaryAnne…
Sometimes a guide is needed with a roadmap and interpretation
The same information in the hands of the entire team including the people at the center that they can understand. So much easier if you speak English! According to the 2011 American Community Survey from the US Census Bureau, 20.8% - fully one-fifth or 60.6 million people - speak a language other than English in their homes.
Proloquo2Go® is an award-winning symbol-supported communication app providing a voice to over 100,000 individuals around the world who are unable to speak.
OneVoice turns the iPad or iPhone into an augmentative and alternative communication (AAC) device. Building on the simplicity of iOS devices, OneVoice is easy to understand, and designed for usability above everything else. Though OneVoice comes with a pre-populated vocabulary (focused on children) the real value is that you can easily add your own phrases and photos to create a custom experience.
Touch Voice + is a Medical Speaking App which allows speech impaired persons to communicate.
Helping people with speech impaired medical conditions to speak; at home, on the go and now in hospital intensive care, ventilator and stroke wards, for affordable Android tablets and iPad. Buy online to install on your tablet device.
Ability to collect personal health data and share across applications. Not personal goals, pain and scared
Wireless blood pressure monitors hooking into apps with Bluetooth
Lab tests: Info about lab tests
EAP: Diagnostics — Many diagnostic processes can be done with remote monitoring tools. One example is MyM3 (My Mood Monitor) , a self-administered checklist screening tool that can assess the risk for depression, an anxiety disorder, bipolar disorder and post-traumatic stress disorder (PTSD) (see M-3 Information Releases Mobile Mental Health Screening Application ).
Consumer education/decision support — The use of mobile applications for consumer self-management marks another evolution in the health care market. One example is a U.S. Department of Veterans Affairs line of mobile applications (including PTSD Coach and Breathe2Relax) that provides users with self management education about PTSD, a PTSD self-assessment, information on where to find support, and tools that can help users manage the stresses of daily life with PTSD (see Free Mobile PTSD Apps ‘PTSD Coach’ & ‘Breathe2Relax’ on the Market; ‘iHeal’ on the Way ).
Clinical treatment — Computer and mobile-assisted treatment planning and clinical expert systems are delivering clinical services that providers can monitor and support. eCBT Mood is an iPhone/iPod Touch electronic cognitive behavioral therapy application that allows consumers to systematically track daily and weekly depression severity, progress over time, and share those results with support or professional caregivers (see MindApps Releases iPhone/iPod Cognitive Behavioral Therapy Applications ).
Early detection of relapse — Remote monitoring can be used to monitor biological changes, which can then be used to detect relapse of certain conditions. For example, schizophrenia and bipolar disorders are characterized by abnormalities in circadian rhythms. This knowledge is being utilized in the Motionlogger watch, a device that captures both the frequency and intensity of sleep and locomotion and enables consumers to track changes in these key indicators (see the Motionlogger Actigraph).
Relapse prevention — Smartphone-based relapse-prevention systems are helping provide timely monitoring, reminders and alerts for consumers. An example currently in development and set for a clinical launch in the UK in September 2012 is Helius, an “intelligent pill” with a sensor that emits a digital signal detected by a device attached to the skin to monitor medication use, heart rate, respiration, and temperature. These data can then be relayed to a patient’s mobile telephone and shared with caregivers (see British Pharmacy To Sell ‘Smart Pills’).
Remote monitoring of patient health — Advances in consumer health management are helping providers proactively intervene before conditions become acute. The Health Buddy® appliance allows patients to answer a series of questions about their health and wellbeing using, which risk-stratifies the answers and sends them for review by health professionals. Current modules include health management programs for psychiatric disorders: bipolar disorder, schizophrenia, depression, and PTSD (see Veterans Administration Selects Six Vendors for Home Telehealth Devices & Services Contracts ).
When I ask my doctors what worries them the most about my future health, both my neurologist and primary care doc say, they worry that I'll fall. Everybody faces risks - too little or too much medicine, anxious, scared, or melt-down, infection, stranded, lost, jobless, forget something important, accident, heart attack, caregiver or neighbor moves, power goes out, no help when you need it - on and on the list goes. While no one can anticipate or prepare for every risk, couldn't we prepare for likely risks? So for me its the risk of falling. I stay as strong as I can, ride a trike that can't tip over, walk with a cane, strengthen my core, get help for uneven surfaces, pay attention whenever I move, sit down when I'm dizzy, reduce clutter, don't let anyone depend on me for balance.Risks to people can be classified as physical, mental, cognitive, and emotional functioning, behavior issues, or financial. Risks of the space around you can be cleanliness and soundness of the space you live in, or possibility of losing your home. Social risks can be aloneness - no help, lack of physical access, not enough information to make decisions, limited or no access to medical care, no phone, no transportation.
What to do? Consider and write down risks. Then start with those that are most likely (likely is not the same as the most serious). Falling is not as serious as being hit by a car, but falling is more likely. Create a plan to reduce or prevent that risk and then develop a plan to address the risk if it happens. I already listed what I do to prevent falling or reduce the likelihood that I'll fall. Then, what do I do if I do fall? I have an ICE (In Case of Emergency) number on my cell phone screen and an ICE paper in my wallet with all my pertinent contact, diagnosis, and medication info in my wallet.
Do you and your caregivers have a risk plan? Start one now. I haven't been able to find a software or app to help set up a risk plan. Do you know of one? Let me know if you do.
Understanding someone else's experience - oh my, so hard! It's difficult enough to understand my wife's experience. I have to pay attention, let my preconceived notions, and mind rants go. And we've been together more than 40 years, love each other, know each other. One of the most challenging parts of my career has been to understand the experience of people at the center of care: 1:1, informal group chats, formal focus groups, and surveys. An imperfect science at best. The more formal and scientifically rigorous, the less I think I know. The very act of standardized questions means we think we know what's important to ask - what's important to them. I'm not so sure. But what about people with cognitive and communication capabilities different than mine? When I worked at Boston Children's, I wondered about the experience of non-verbal people. Surveys don't help. When my boys were very young, my older son would tell us what his younger brother was saying. I couldn't understand a word. I just knew he was trying to say something very passionately. People together at the center often know first when something is off for a non-verbal person. At Advocates, where I work, we rely on direct care workers to notice something is off. They contact a nurse who does an assessment and can often pinpoint a cause: pain, infection, whatever. We conduct surveys to better understand quality of life of the people we support, but it's tough. Who fills out the survey? The results have some value, but how much? People with different cognitive and communication capabilities than me have an experience with life. What is it? What do they aspire to? How can we know? I want to know!
And now for a reality check… And I want to address each of these points directly.
Technology is an enabler but it’s not enough. Just navigating the healthcare system is a monumental task that would be so much easier if caregivers had access to care navigators or similar people who could assist them through the maze of services, jargon, and red tape.
Widespread adoption of existing family caregiver tech is painfully slow. Simply put, “you don’t know what you don’t know”. Getting the word out to 93 million people is challenging and, right now, not being done in a coordinated fashion.
Information on the web is not curated and written at a high literacy level. It becomes a mine field for caregivers to find, sift through, and comprehend medical information.
Electronic access to your health data is spotty. Blue Button is still in it’s infancy. Providers still make it difficult to obtain medical records. And it’s 2014.
Connectivity/monitoring does not imply “action”. I am often in awe of the monitoring technology that is already available. But it must be coupled with people in the community (in addition to first responders) who can take ACTION when red flags arise.
Patient (and Caregiver) Generated Health Data are not widely accepted and no framework exists for receipt/review/response. Last year, the Patient Generated Health Data Technical Expert Panel convened by ONC and the National eHealth Collaborative laid the groundwork. Now we need to put those recommendations into practice!
And last, but not least, all caregiving challenges cannot be solved with technology.
Changing attitudes is about changing culture. And we have to change attitudes across the healthcare continuum. Start by identifying a champion in your organization to spearhead a family caregiver initiative. Learn about organizations and new technologies that can support family caregivers. Encourage your colleagues to do the same. The return on investment is priceless.
Danny is going to help us focus on technology as an enabler.
Do you hear the theme? Health and care is about people and vibrant, maturing relationships. Treat the caregiver as you would treat the parent, child, friend who will care for you. Anticipate. What tools would you want when you care for someone. Think of health care broadly beyond your familiar walls. Take one step outside and hardwire that link.
Caregivers stich the fabric of our communities together – they are often hidden.
Help these helpers – share what you know, spread tools. They are not alone
