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Professional, licensed caregiver, medical or not such as nurse, physician, technologist, therapist, etc.

Health – It’s All Relative

By Caregiver, Clinician, Consumer, ePatient
One of my first gigs in my nursing career was working at the Detroit Rehabilitation Institute. I was working with a 30-year-old man with quadriplegia from a gunshot wound to the neck practicing driving his motorized wheelchair with a mouth stick. Coming down the hall towards us was a 40-year-old man recovering from a severe stroke learning to maneuver his wheelchair with his right hand and right foot. He was tilting  dramatically to his right and drooling quite a bit. His very young wife, quite dressed up, was following behind him looking bored and a bit disgusted. Out of the corner of his mouth, the man with quadriplegia said, “Glad I’m not him.”

I remember this story as I wonder what is health? Is it being able to do what I want to do? Is it not having a symptom or disability or maybe not having to think about a symptom or disability? Is it tests being negative?  I don’t know, it’s all relative.

Health Partners

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man
Many years ago my wife and I got a letter from Zimbabwe: Dear Mr. and Mrs., I’m your son’s health partner.  He’s fine now, but he had malaria, was in the hospital for several weeks, and almost died. Our son had gone to Zimbabwe as a development aide worker.  During his team’s training, my son asked me to teach a health unit for them. I was a nurse and had been a paramedic.  I essentially suggested they keep it zipped, know where their food and water came from and had them select a health partner in the team.  The idea was that if anything should happen, health-wise, they would have someone who would stick with them as they got the treatment and recovery they needed in this unfamiliar place.  I’m so glad I did.  I’m reminded as many of have children leaving home now for college, do they have a health partner? Who will stick with them if they get sick? Navigating health care when you feel like crap is tough at best. Identifying a health partner before it’s really needed is the key. I don’t think of it much myself. My wife is my health partner.  My sister and my kids will step in if need be. I’m blessed.  Who is your health partner?  Who are your children’s health partners?

What do I Need Electronically to Work With My Health Team?

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader
What do I need (must have) electronically to help me work with my health team?

  1. All team members (including me) operate off the same data set. This means that we know and agree what are the most important pieces of information about me (the minimum data set).
  2. That these pieces of information are collected somewhere, shared, merged, updated and corrected easily as needed.
  3. My health goals and plans to get there are explicitly stated.
  4. Able to track my progress to those goals.
  5. A safe, reliable way to communicate with my team members and my team members to communicate with me that works for me.
  6. A safe reliable way for team members to communicate with each other that gets recorded for me to see.
  7. Able to read, print, and transmit this information anywhere, especially somewhere unexpected outside my usual network-like an Emergency Room.
  8. Able to view notes my team members write about me.

What would I like to have?

  1. A description of how I react to pain and guidance for what works and doesn’t work to relieve pain for me.
  2. A description of how I react when scared and guidance for what works and doesn’t work to calm me down.
  3. Access to recommended places to get more information.
  4. Able to write notes with other team members or write notes myself that other team members can see.
None of these needs and likes are fully available now in spite of many years of effort and money spent on electronic records. The most progress has been made on #1 same data set, #6 safe, reliable communication, #7 read, print, transmit info, and #8 view notes. Many of these items are not even in the realm of discussion. Members of health team still mostly means doctors, nurses, and other acute care medical professionals, not community health or behavioral health providers. Still beating the drum for these magic levers of best health.

Health Literacy – a Magic Lever

By Clinician, Consumer, ePatient
How do I take two tablets twice a day? What did the lab work show? I don’t want to take that kind of medicine. I just want to walk daughter down the aisle. My shoulder hurts when I’m trying to sleep. Can I believe what I read on the web? When do I go back to this doctor? How much will the ER visit cost? So much information and so many people join us in our journey of best health. Information can be heard or be written on paper or on the web. We could be sharing information about ourselves. Questions are asked and answered – or not. People who care about each other and very familiar with each other can struggle to communicate. Their experience, skills, language, ways of thinking and speaking are different, are diverse. Is it any wonder that sharing health information can be so hard?  Some people refer to this communication challenge as health literacy. For a long time I thought that health literacy was about being as simple as possible and I used Microsoft Word’s Readability Statistics to see what grade level my writing was. Goal: 8th grade, 5th grade. (This post scores at a 9.3 grade) As my vision deteriorated I noticed that color and white space affected me. Design made a difference. As I exercise my listening muscles, I find that active listening affects the speaker and the listener.

My colleagues from the Society of Participatory Medicine, Peggy Zuckerman and Kathy Kastner have been orienting me to the vast world of health literacy. They tell me that the US Department of Health and Human Services defines health literacy as:

“The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”

The report continues:

“Health literacy includes the ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, doctor’s directions and consent forms, and the ability to negotiate complex health care systems. Health literacy is not simply the ability to read. It requires a complex group of reading, listening, analytical, and decision-making skills, and the ability to apply these skills to health situations.

 Health literacy varies by context and setting and is not necessarily related to years of education or general reading ability. A person who functions adequately at home or work may have marginal or inadequate literacy in a health care environment. With the move towards a more “consumer-centric” health care system as part of an overall effort to improve the quality of health care and to reduce health care costs, individuals need to take an even more active role in health care related decisions. To accomplish this people need strong health information skills.

What are the skills we need for Health Literacy?

ePatients are often faced with complex information and treatment decisions. Some of the specific tasks people are required to carry out may include:

* evaluating information for credibility and quality,

* analyzing relative risks and benefits,

* calculating dosages,

* interpreting test results, or

* locating health information.

 In order to accomplish these tasks, individuals may need to be:

* visually literate (able to understand graphs or other visual information),

* computer literate (able to operate a computer),

* information literate (able to obtain and apply relevant information), and

* numerically or computationally literate (able to calculate or reason numerically).

 Oral language skills are important as well. [People] need to articulate their health concerns and describe their symptoms accurately. They need to ask pertinent questions, and they need to understand spoken medical advice or treatment directions. In an age of shared responsibility between physician and ePatient for health care, people need strong decision-making skills. With the development of the Internet as a source of health information, health literacy may also include the ability to search the Internet and evaluate websites.

Health literacy is a magic lever of best health.

Photo by Markus Winkler on Unsplash


By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man
Let me tell you about our family’s experience as a team, talking, supporting, and coordinating during the terminal phase of our son, Mike’s death from metastatic melanoma. Mike was living near Buffalo with his girlfriend, going to school, my wife and  I lived in Albany, and my other sons lived elsewhere. Mike’s girlfriend’s parents (I’ll call them in-laws here – it’s shorter) also lived in Buffalo. We struggled with logistics, emotions, practicalities, money, clinicians, treatment, life. One day when my wife and I were in Buffalo at the in-law’s we realized we all cared about Mike and needed to coordinate, support, communicate regularly. We also realized that while Mike was the central, principal person, the whole expanded family was hugely impacted and impactful. We set up a weekly conference call-this was before smart phones, Skype, other media. During these calls we addressed everything: pain relief, bowel problems, transportation to appointments, where and whether to get a specific treatment, test results, which clinician, where Mike lived, fund raising, relationships among us, fear, grief, grief counseling, humor, location of and caregivers during Mike’s post surgical care, school, equipment, whether and when to start hospice, the weather (travel). While we didn’t include clinicians, we learned together more about what treatment was available and what kind of clinicians fit in with Mike’s outlook and our system. Found a radiation oncologist who especially fit in and connected with Mike and he became our lead clinician. We systematically went around to each person on the call, starting with Mike, everyone shared their issues, information, whatever. Everyone was heard, we got much better at active listening, we felt included, supported, loved. We knew what was going to be done during the week: assignments, appointments, travel. Sibs joined when possible. A moment for me was when Mike’s girlfriend was upset with me, because I told her mom the result of a test before she could tell her mom. It seems so small in the scheme of dying, but it helped set a tone, removed an annoying pebble in her shoe. These calls (and in person when possible) continued through to after Mike died. The day after he died, we went around the room, with all of both our family and the in-law family recounting how Mike died, where everyone was, how we came to the place of being together at that moment. Before he died, Mike told me that his last year was the best year of his life. He was in love and he was loved. Open dialogue amongst us made a difference. No unfinished business. The grief felt clean.  I’m telling you this story now because I attended a symposium yesterday sponsored by the Massachusetts Department of Mental Health about a treatment for psychoses from Finland being tested at Advocates, Inc. called Open Dialogue.  Once I get permission to share details with you from the presenter, Mary Olson, PhD, I will. It reminded me of our experience with Mike dying and beautifully reflected the values often spoken about at the Society for Participatory Medicine and in this blog. Open Dialogue – a magic lever for best health.  More to come.

Are We Safe?

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader

Sometimes our health journey seems fraught with peril. So much can go wrong. Unexpected danger lurks around every corner. Yet, team members (caregivers, loved ones, professionals) accompanying us on our health journey all seek a safe ride for us and themselves. Safety is complicated. It begs many questions.

  • What kind of safety – emotional, physical, or cultural? Personal, team or organizational safety? Absence of error, mishap or tragedy?
  • What about the dynamic tension between risk and rights? We could feel absolutely safe with a trusted Big Sister always watching and protecting. How much of our human rights would we give up for that absolute safety?
  • What role do we ePatient drivers play in our own safety? What role do our leaders organizations play in our safety?
  • How is safety demonstrated? Surely part of safety is perception.  Read More

Peace with Aloneness

By Caregiver, Clinician, Consumer, ePatient, Family man
All humans have at least two things in common, they experience tragedy and aloneness. Aloneness features prominently in the health journey. We fortunate ones have supportive, often present health teams. Still it’s our journey to travel – often alone – as an ePatient, caregiver, or professional.  What is aloneness? This past week  I’ve asked many.  Some refer to loneliness, some to being alone. Loneliness is being apart, excluded or by choice. Loneliness feels like less – less than wanted or expected or experienced – the down next to the up. Less fun, less love, less power, less inclusion, less function, less help, less future, less control. Aloneness is not with others. People mostly speak of aloneness as a respite – relief from humdrum, pressure, worry, relationships, routine.

Sensitivity by other members of the health team to loneliness or aloneness challenges. How do we listen for loneliness or aloneness in others? Either its worn on the sleeve or its buried. If we’re empathetic enough to see it, how do we react? Respect it, pull or push, silent presence, distract, hug? The hardest challenge as a member of health teams – distinguishing between aloneness and loneliness and responding. For myself, I appreciate those who notice something’s off, are present, open a door, stand at the threshold, and don’t expect me to walk through it. I relish my aloneness from time to time. Peace with loneliness and aloneness is a magic lever of health.

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

Shared Decision Making Month

By Advocate, Caregiver, Clinician, ePatient, Leader
According the Informed Medical Decisions Foundation shared decision making (SDM) is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences. March is Shared Decision Making month.

I have written extensively about the relationships and behavior among a person’s health team as it impacts the course and experience of the health journey. The team – patient, caregivers, clinicians, loved ones, and helpers – set goals, research options, select treatment, share information, coordinate, celebrate, grieve, and wait  together. Shared decision making is part of team work. Read More

Managing medications: Experience of empowered & engaged partners

By Advocate, Caregiver, Clinician, Consumer, ePatient

Managing medications – the most frequent interaction between health team members – includes both the clinical aspects of our health journey and the behavior of health team members. Medication management that works depends on empowered, informed patients and their caregivers prepared for clinician visits, and engaged, collaborative clinicians skilled at working with activated patients. Unfortunately, current management is often haphazard, disorganized, time-consuming, and frustrating with a heavy dose of paternalism in complaints about lack of “patient adherence.” If managing medications worked better we could see better patient safety, improved health outcomes, and a positive impact on life flow and work flow. The challenge is so widespread and so fundamental. How can we systematically approach the opportunities in medication management to find the right tools and methods?C:\Users\Dvanleeu\AppData\Local\Temp\enhtmlclip\Image.gif

First we need a framework for analysis, then a list of relevant activities that would benefit from tools and methods, and finally, we need to recognize success. So jump in: Read More