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Fear on the Health Journey

By Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist
Fear – an unwelcome, yet familiar, occasional companion on the health journey. A sinking feeling in the pit of your stomach. Your mind racing, reliving dreaded possibilities. Anxious panting with dreams of careening out of control. What helps? A certain companion, prayer, a drug, meditation, comedy, music, time. When I’m afraid, my family’s reassurance, a loving, lingering embrace, belly laughs, imagining my son, Mike, his arm around me, sitting with our feet dangling on the bridge to our WV home, listening to the creek rush below. The human condition contains fear – it’s inevitable. Knowing what works and what doesn’t when scared is more likely needed than your blood type or diagnoses. Why doesn’t the health team routinely keep track of this? It should be on a card in your wallet.

EHR Access for the Family Caregiver

By Advocate, Caregiver, Consumer, ePatient, Informaticist

We’re looking at technology that can help the primary caregiver support someone’s health journey. Access to the electronic health record (EHR) impacts seven of the fifteen needs described in a previous post:

    1. Common goals for the health journey developed with the person at the center, known by the entire health team
    2. Plans to attain those goals
    3. Current medications, schedule of taking, how they affect the taker
    4. History of medications, what worked and what didn’t
    5. Members of the health team, professional and lay people, how to reach them and the ability to reach them
    6. Schedule of events past and future – procedures, hospitalizations, diagnoses, appointments
    7. The same information in the hands of the entire team including the people at the center that they can understand

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 physicians’ progress notes. Gives your data!!!

Photo by rawpixel on Unsplash

Access to your health team – Asynchronous communication

By Caregiver, Clinician, Consumer, ePatient, Informaticist
Much of health care depends on relationships. What do people at the center of care and professionals in health care look for in their relationship? Much as with any relationship – access when needed, exchange of information, listening, respect, speaking the same language, understanding each other’s values and priorities, follow through.  Relationships depend on access to each other – particularly tough in health relationships. Little natural about it with very different lives, different patterns, different circles, different priorities. In our personal lives we take access for granted. We know family habits and patterns. On the job we work in teams and routinely meet, our paths cross. In health relationships, not so much. Professional serve lots of people and people work with lots of health team members, many of them strangers – hence appointments and leaving messages. Kind of amazing that health relationships depend on direct connection. Why don’t we depend on asynchronous communication (NOT connecting in person or by voice, NOT in real-time). Examples include emails sent and read when each person has time; open notes (professional narrative entries into the medical record that people at the center of care can read via portal), and taping appointment and phone conversations for review after the fact with other health team members.

Technology can support asynchronous communication if people on both sides of the relationship are comfortable. Some are exceedingly uncomfortable. Especially challenging may be the change in skill set and habits. Some people at the center of care and professionals  struggle with new technology or  have no time to learn new technology – sometimes, but not always its generational. Changing habits can be tough for anyone.  Why change? I don’t want anyone looking over my shoulder! This app makes no sense, I don’t have time to learn it. I’ve learned to use it, but it doesn’t contain information important to me.
How do you use asynchronous communication for your health?

Kissing the Boo Boo

By Advocate, Caregiver, Consumer, Informaticist
Health care is a tower of Babel. It’s the rare person who can translate across every part of health care. Some part of health care is a mystery to someone. Doctors often don’t understand the language or culture of the people they support.  Caregivers often don’t really understand the person who they care for even if they love them. Who really understands another’s pain? People in one profession often don’t understand other professions. Few professionals or people at the center of care understand technology, policy, or insurance speak.

Here’s a stark example of the divide between the health industry (professionals, consultants, and information technology) and people at the center of care (patients and caregivers): For several years I have talked with anyone I can about a basic piece of information needed when a person has an unexpected health emergency in an unexpected place (an emergency room visit). What works for me when I’m in pain and what doesn’t?  What works for me when I’m scared and what doesn’t? Every caregiver I’ve discussed this with says, Oh yeah. Absolutely. Almost no professional, consultant, or technology person has even understood the question. It’s like I’m speaking Klingon. As a parent you know when kissing the boo boo works and when it doesn’t. When they’re scared some want to be left alone, others want you to hold their hand, others respond to specific music. Some people react badly to a particular medication, some react well to very small doses.
I’m trying to understand this divide. Aren’t people in the health industry also people at the center of care? Why doesn’t the Continuity of Care Record (CCR) and Blue Button Plus include this basic information? (The CCR document is used to allow timely and focused transmission of information to other health professionals involved in the patient’s care – medications, allergies, previous surgeries, diagnostic history). It would be a challenge to figure out how to do this, but isn’t it worth it? How can we bridge this gap?

Making a difference for caregivers!

By Caregiver, Consumer, Informaticist
MaryAnne Sterling (@SterlingHIT) and I were honored to discover that we had been invited to give the first presentation to the Health Information Management Systems Society (HIMSS) about caregivers-Supporting Family Caregivers on the Front Lines through Health Information Technology link. 40,000 people attended the conference last week and about 200 attended our presentation. HIMSS is waking up to the 93 million unpaid caregivers in this country. What would happen to the cost of health care if 1% could no longer provide care? We urged health care professionals to actively partner with the family health team, provide ready access to health information about the person at the center of care to caregivers, and treat caregivers as you would the person caring for you.  This beachhead was made possible by several years of work of a small but active group of members of HIMSS’ Connected Patient Committee and the Society for Participatory Medicine. Thanks to many of our readers who contributed to our material. Making a difference is so cool.

Technology is the cutlery and the dessert

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist
I’m preparing a presentation about Caregivers and Health Information Technology to be delivered in a month at the HIMSS14 conference in Orlando with MaryAnne Sterling. So many challenges as caregivers, as persons in the center of care, as health professionals, as administrators, and as developers. First, there are different levels of caregiving. There’s the caregiving of life partnerships: partners, spouses, parents, children, friends.  That’s different from caregiving for someone who has challenges with activities of daily living and different from caregiving someone who has diminished mental capacity, is acutely, gravely ill, or is dying. The value of technology for caregivers and the person in the center is to enhance information access, communication, tracking and scheduling. The farther along the continuum of intensity the lonelier it gets and the harder it is to carve out time for anything else, especially technology. What did we do before video links like Skype or FaceTime, before tweets, chat rooms, and social media?  They’re easy to learn, easy to execute, immediate gratification – limit  loneliness. Tracking and scheduling on paper and spreadsheets has been forever-apps have a learning curve. Searching the web is easy, but getting your personal health information is hit and miss and takes maintenance to keep accurate and up-to-date. 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.

Book Review: Engage! Transforming Healthcare through Digital Patient Engagement

By Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist, Leader
As a member of the HIMSS eConnecting with Consumers Committee that sponsored the book, Engage! Transforming Healthcare through Digital Patient Engagement I knew in advance how good it was going to be. My colleagues, the editors (Jan Oldenburg, Dave Chase, Kate Christensen, and Brad Tritle), have that valuable rare mix of profound knowledge, humility, and practicality. The expert, the novice, the lay person, and the clinician will find value here. It’s up-to-date, timely, spiced with foundational material that will be relevant well into the future. I learned something new in each section, but found the case studies most enlightening.

Each chapter ends with Why is patient engagement….good for patients; good for providers; and good for the system overall? The answers cover the spectrum from communication, to preventing mishaps, to meeting health goals, to understanding, to increasing loyalty, to reducing cost, etc.  Read More

Good Government – Office of the National Coordinator

By Consumer, Informaticist, Leader
I frequently write here about access to health information – necessary to just-in-time decision making, tracking status in meeting health goals, coordinating care among your health team – heavily weighted to individual action and team relationships. Effective communication within your finely honed health team is necessary, but not sufficient. You and your team still needs to access and share health information from all sources to coordinate your care. Much of health information sits in electronic tools: electronic medical records (EMR), personal health records (PHR), on the web, in smart phone applications (apps), and medical devices. We can share this information in emails and in the EMR, PHR and apps. Unfortunately, the tools often don’t link. They exist in different languages, requiring expensive translators (interfaces). In industry jargon, they lack interoperability. Often tools within one provider – a hospital, health care system, clinic needs these interfaces to work together. The problem is compounded when you see many clinicians in different systems, as I do. Multiple towers of Babel.  Read More