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Families, caregivers and health information technology 20141020
- 1. www.Advocates.or g Families, Caregivers and 1 Health Information Technology 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
- 2. www.Advocates.or g 2 93,000,000
- 3. 3
- 4. Caregiver’s Employer Interpret Discharge Instructions Identify Patient Risk Signs Interpret Medication Labels/ Administer Meds 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 4
- 5. www.Advocates.or g 5 People at the Center of Care • Individuals • Consumers • Patients • Guardians • Friends • Family • Network
- 6. 6 School Info, Advocacy, Leadership Recreation, Community Legal, Financial Support Health Caregiver’s Map www.durgastoolbox.com
- 7. www.Advocates.or g 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.Advocates.or g 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
- 9. www.Advocates.or g 9 Health Team • Support that works • Members - professional and lay people • How to reach them • Ability to reach them • Helpfulness – for what? • Treated with Respect
- 10. www.Advocates.or g 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.Advocates.or g 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 11
- 12. www.Advocates.or g 12 Information: Schedule of events past and future – Procedures, –Hospitalizations, – Diagnoses, –Appointments • Date and time • Tips, instructions, • Directions and Accessibility
- 13. www.Advocates.or g 13 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? 13
- 14. www.Advocates.or g 14 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
- 15. www.Advocates.or g 15 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
- 16. www.Advocates.or g 16 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
- 17. • New Care Setting • New Phase of Recovery/Illness Maintenanc www.Advocates.or g 17 Care Giving Information Cycle Crisis Care Transition • Accident/injury • New Diagnosis e • Chronic Condition • Permanent Disability
- 18. •Accident/injury •New Diagnosis www.Advocates.or g 18 • 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
- 19. •New Care Setting •New Phase of Recovery/Illness www.Advocates.or g 19 • 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
- 20. •Chronic Condition •Permanent Disability www.Advocates.or g 20 • 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 20 Maintenance
- 21. www.Advocates.or g 21 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…
- 22. www.Advocates.or g 22 Social Media • Twitter • Facebook • LinkedIn Connect Learn
- 23. www.Advocates.or g 23 Blog • https://wordpress.com/ • https://svbtle.com/ • https://ghost.org/ • http://wardrobecms.com/ • http://postach.io/ • https://medium.com/ • https://roon.io/ 23 Connect Learn
- 26. www.Advocates.or g 26 Journaling Coordinate Connec t • 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
- 27. www.Advocates.or g 27 Logistics Coordinate • Balance (for Alzheimer's caregivers) • Caregiver's Touch • CareZone
- 28. www.Advocates.or g 28 Electronic Health Record • https://www.practicefusion.com/signu p/ • http://www.myopennotes.org/ Blue Button • http://healthit.gov/patients-families/ blue-button/about-blue-button Access Track Manage Coordinate Connect Learn
- 29. www.Advocates.or g 29 HIPAA: Access Rights / Privacy Rights • http://healthit.gov/patients-families/ protecting-your-privacy- security Access 29
- 30. www.Advocates.or g 30 End-of-Life • Practitioner Orders for Life-Sustaining Treatment (POLST) in MA • MOLST (Medical Orders for Life- Sustaining Treatment) in some states. • In Massachusetts POLST here. • In California, it's here. • A map with state-by-state links is here. Learn
- 31. www.Advocates.or g 31 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 Track Manage
- 32. www.Advocates.or g 32 Behavioral Health Apps • DSM-5 Diagnostic Criteria by Connect Manage American Psychiatric Association • Big White Wall • T2 Mood Tracker Track
- 33. • http://www.kgreer.com/Top10Apps/ www.Advocates.or g Copyright © 2014 KGA, All rights reserved. 33
- 34. www.Advocates.or g 34 Remote Monitoring
- 35. www.Advocates.or g 35 Communication Translation • http://touch-voice.com/ $24 • https://itunes.apple.com/us/app/on evoice-aac/id412448074?mt=8 $200 • Proloquo2Go $220 Access Track Manage Coordinate Connec t Learn
- 36. www.Advocates.or g 36 My wife, has been diagnosed with Frontal Temporal Dementia. She has very regressive mobility and speech issues. We have provided her with an IPAD which we are both learning to use. I would have to say that my largest challenge – thus far - as a care giver has to do with getting my wife, Diane, on Medicaid. It has been a very tedious process which required hiring a lawyer to go through the maze of paper work and regulation. Obviously, the next largest family challenge – as it is with all families facing this challenge - is to stay ahead of the curve. As the disease regression continues, our primary family goal is to keep her in her home surroundings. My wife is a very private person and never liked to have pictures taken of her – although she is a very beautiful person. Diane Access Manage Coordinate Connect Learn
- 37. www.Advocates.or g 37 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 Manage Coordinate Connect
- 38. www.Advocates.or g 38 I use spreadsheets to keep track of everything
- 39. www.Advocates.or g 39 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 Coordinate Connec t
- 40. www.Advocates.or g 40 Sarah’s Family “…our biggest challenge was when the Neurologist gave us the diagnosis and walked out of the roomtelling, 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 Coordinate Connect Learn
- 41. www.Advocates.or g 41 For the Medical Team Healthcare is a Team Sport What • Include family caregivers as key members of the person’s care team How • Allow the person 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
- 42. What www.Advocates.or g 42 For the Medical Team Include the Family Caregiver in the Conversation • Listen • Educate • Train How • Pay attention to the information they have to share • Add their observations to the person’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 LET Family Caregivers Help…
- 43. www.Advocates.or g 43 Help Change Attitudes What How • Make it everyone’s responsibility to assist the family caregiver in coordinating both healthcare and support services • 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
- 44. www.Advocates.or g “…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…” 44 Kathy’s Family Access Track Manage Coordinate
- 45. www.Advocates.or g 45 Gail’s Family Access “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.”
- 46. www.Advocates.or g “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...” 46 The Mazza Family Track
- 47. www.Advocates.or g “We use email with home health care providers so she has a steady team of companion caregivers.” 47 The Connors Family Coordinate
- 48. www.Advocates.or g 48 “We communicated via the internet to keep everyone up-to-date” Connect Danny’s Grandson
- 49. www.Advocates.or g “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.” 49 The Hultz Donahue Family Learn
- 50. www.Advocates.or g 50 What Haven’t We Covered? • Quality of Life • Personal Risk Management • Understanding Someone Else’s Experience
- 51. www.Advocates.or g 51 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…
- 52. www.Advocates.or g 52 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
- 53. www.Advocates.or g 53 And Aspire to Get Here Caregiver Generated Health Data (CGHD)… 53 CGHD via cell/smart phone or Google Glass Triggers clinical workflow Results in clinical intervention
- 54. www.Advocates.or g 54 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 54
- 55. www.Advocates.or g “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.” 55 The Conroy Family Access Coordinate
- 56. www.Advocates.or g 56 “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 Coordinate
- 57. www.Advocates.or g …to re-engineered workflows • Capture of family caregiver information • Seamlessly coordinated care • Alignment of all aspects of care (including social services and community supports) 57 Technology Needs a Little Help… • Collaboration with the community …from a re-aligned health workforce • Patient educators • Navigators • Local care and services coordinators • Care managers
- 58. www.Advocates.or g 58 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
- 59. www.Advocates.or g 59 Break Down Care Coordination Silos What • Align communit y 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 Healthcare Community Supports Social Services
- 60. www.Advocates.or g 60 Do • Include family caregivers as key members of the 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 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
- 61. www.Advocates.or g 61 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
Editor's Notes
- 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.
- 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.
- This is what we face… a maze of obstacles that are completely silo’d today. So let’s begin our look at solutions. Danny will get us started with a look at the family caregiver as a partner.
- 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.
- 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.
- Now let’s address the technology needs of family caregivers… We’ve divided them into six categories: Access, Track, Manage, Coordinate, Connect, and Learn. When we align the technology needs with the information cycle, we see the following…
- 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. Danny is going to 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!
- 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?
- 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 gve 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 physcians' progress notes. Give us our data!!
- How do people at the center of care make decisions when they approach the end-of-life? Some people focus on Advanced Directives, Do Not Resuscitate, Health Care Proxies. Another document is Practitioner Orders for Life-Sustaining Treatment (POLST), called MOLST (Medical Orders for Life-Sustaining Treatment) in some states. From Wikipedia: Unlike advance directives, a POLST summarizes the patients' wishes in the form of physician orders for end-of-life care.[3] POLST provides explicit guidance to health professionals under predictable future circumstances.[1] POLST can build on an advance directive but can also function in the absence of an advance directive. If the individual lacks decisional capacity, a surrogate can engage in the conversation and the consent process that forms the basis of the POLST process. The challenges that patients, families and their healthcare professionals face at the end of life can be daunting. Caring and sensitive communication can elicit patients' wishes which can then be documented in an advance directive. To put these preferences into actionable orders requires an additional tool, the POLST form. Healthcare professionals and their organizations can overcome the myriad barriers to communication across systems of care by developing a POLST program, creating a method that respects some of the most deeply held values of patients.[7] In Massachusetts where I live you can find POLST here. In California, where my mom lives it's here. A map with state-by-state links is here. Once decisions are made, communication can be tricky. Will the decisions be available at the point of care when the decisions are important? Some people's documents are in one medical record, some in many. Some people send the documents to their children or their proxies. Some people tell everyone they can think of and give them copies of the documents. My mom and I were advised to tape the documents to the refrigerator or inside of the front door so the EMT's would see them. My Health Care Wishes is an app from the American Bar Association to manage and store your Advanced Care Plan documents including Advanced Directives, DNR orders, POLST, and Anatomical Gift. Making decisions is necessary, but not sufficient. They must be communicated. What experience have you had with this challenge?
- 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 ).
- 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.
- Sometimes a guide is needed with a roadmap and interpretation
- A recurring theme from caregivers we know is shock and desperate aloneness. Technology opens the doors to community. MaryAnne…
- The stories that Danny highlighted emphasize the importance of including family caregivers as key members of the patient’s care team. Providers should encourage patients to identify the person or persons who actively participate in their health decisions. Remember, these are the people doing the “heavy lifting” behind the scenes. You likely know the active family caregivers in your community. They frequently call to make medical appointments and accompany their loved one to those visits or show up in the ER when a family member is in need. Are they comfortable with the care they are being asked to provide? Find out. Do they know where to find support services? Ask them.
- Listen/Educate/Train: “LET” family caregivers help. They can be your greatest asset if you take the time to engage them and share information with them. For example… don’t assume that family caregivers know about your patient portal, how to use it effectively, or how to navigate the next steps in their loved ones care. This does not come naturally to most people – but it MUST be a skillset that we engrain into our population moving forward. Patient outcomes depend on it.
- 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.
- One of the benefits of changes to HIPAA and the proliferation of Health Information Highways is electronic access to lab data. MaryAnne…
- Again antidote to aloneness and connection to community – families, networks, resources.
- 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.
- 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.
- This my grandson. He had a tough start. Doing well now! Our family is international.
- 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.
- People at the center reflect often about quality of life. Sometimes in relation to decisions about medical care as in, I’d rather have quality of life than chemotherapy or for the disabled, we value individuals experience and quality of life. What does quality of life mean? Whose quality of life? I find it hard to separate quality of life of the individual and their family caregivers – so intertwined and mutually dependent. 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.
- Where do we start? I might disappoint everyone in this room when I say “with humans”! We need care navigators and lots of them. And we need the ability to communicate with our loved one’s providers, to organize and interpret information, to monitor our loved ones condition (even when we are not with them!), to coordinate care and services.
- But let’s aspire to get here! Our vision for the future includes caregiver-generated health data that is as readily accepted as data that comes from other sources; where family caregivers know that there are people, processes, and technology ready to support them seamlessly in their caregiving efforts – no matter how large or small. With this in mind, Danny is going to shift our focus to people and processes as the glue.
- Communication with and between health professionals remains, for me, the greatest challenge. Technology can help - but only for those who already prioritize communication. If you're good at communicating, technology is a wonderful adjunct. If both parties aren't good at it, technology is no help at all. The main dish of caregiving is person-to-person. Technology is the cutlery and the dessert.
- Caregivers need a guide and a translator. My Conroy friend works in Managed Care and knows the ropes. Still they needed a lawyer. MaryAnne is going to give us a few examples from her own experience…
- 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. Like the Conroy family, I 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.
- I have a new favorite quote that I heard for the first time last week: “Your solution is not my problem.” Let’s face it: technology, in order to deliver on the promise of better healthcare, needs a little help from a re-aligned workforce and re-engineered workflows. We often overlook the basics, because we are so concerned about “who will pay”. But common sense tells us that we need to insert those who can help navigate, those who can educate, those who can coordinate, into the healthcare workforce. And we need collaboration on a whole new level.
- 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.
- Care coordination is truly a “community sport”! Organizations that provide these support services are eager to partner with healthcare providers. Identify a care coordination champion in your organization and start connecting the dots in your community. Leverage the knowledge of existing partners who know the social services and community supports landscape well. And while you are busy engaging family caregivers, Danny is going to tell us about the do’s and don’ts of interacting with them.
- 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.
- When you go home continue to act like your attending a conference. Be curious. Explore. Get to know one caregiver next week and another one next month. Let them guide you for 5 minutes around their world. Then return the favor and be their guide and translator. Hang on, it’s a ride