Tag

storytelling

Share the Stories. Help the Helpers.

By ePatient, Family man, Leader, Podcasts No Comments

Stories are mirrors. It’s really about us. Our stories matter. Tell your story. As much as you can. Meld the stories together. Share the tragedy. Share the silver linings. Honor the caregivers. Help the helpers.

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CEO of Your Health Now

By Advocate, Caregiver, ePatient, Family man, Leader, Podcasts One Comment

Feeling my oats as CEO of my Health! I lead and manage a company dedicated to my health. Let’s pause and gather this frame into our brains and sinew with the help of the past few interviewees. Then we’ll explore more in the next few episodes.  Come aboard and listen or read.

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Stories, Not Noise, for You – the CEO of Your Health

By Advocate, ePatient, Informaticist, Podcasts, Uncategorized No Comments

Chat with Jan Oldenburg, a nationally recognized thought leader on personal health engagement focused on transforming healthcare and the physician-patient relationship through digital tools. In this podcast episode, we spoke about the language of goals and preferences, situational leadership, making a story from the noise of data, contextual education, and drinking from both ends of a fire hose.

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Learning What Works

Learning What Works

By Caregiver, ePatient, Researcher One Comment

One of my passions in life is Learning What Works for people on their health journey. As we travel, we make choices – endless choices.  Should I do A rather than B? Eat the brownie or don’t eat the brownie? Take a walk or don’t? Go to the doctor or wait until I feel worse? Fill the prescription the doctor wrote or don’t? Have surgery or wait and see? Stay home with my dad with dementia or arrange for home care? Or we make no decision at all (a decision in itself). Sometimes people search for help in making these choices. Help from professionals on their care team, from their care partner, from Dr. Google, from their mates or social network.

Learning what works is an experiment.

A person tries something – it worked or it didn’t – for them. To know it worked means that the person has an idea of what they are trying to accomplish (See my post on personal health goals). And that they think there’s a relationship between what they tried and what they accomplished (or didn’t). I have a fever, took an aspirin, and the fever dropped. I have heartburn, stopped eating chocolate, and now less heartburn. My MS symptoms are getting worse. I reduce manageable stress. My symptoms subside. What’s important in all this is that I know what I want, I try something, and I feel better or accomplish what I wanted (or didn’t). Some people, like me, have a written care plan and keep track with lists and spreadsheets. (See my post on planning personal care)  Most don’t. Read More

100th Birthday

By Advocate, Family man 10 Comments

We celebrated a 100th birthday around my Aunt Kikke, born during WWI in the Netherlands. She interrupted medical school and then emigrated to the US when the Nazi’s invaded.  She couldn’t get into medical school here because she was a refugee, a woman, and a Jew. She was finally accepted to Johns Hopkins Medical School on Albert Einstein’s recommendation. Yes, that Albert Einstein. Aunt Kikke, Kato van Leeuwen, practiced as a psychoanalyst through her 90’s. The US has thrived throughout its history from the inspirational careers of refugees and immigrants such as my Aunt.

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Penny Whistle for Father

By Family man, Musician 2 Comments

Who knew he loved penny whistles?  The pianist who accompanied his cello-playing friend on piano for years told a story yesterday at his funeral. At Christmas last year, this father who I knew as awkward, serious, unemotional, religious, conservative, classical music-loving, got the church choir penny whistles and led them in a performance of Good King Wenceslaus. While the story was told, the priest pulled a penny whistle out from the pulpit and tweeted a few notes.  “It’s there to keep me humble.”

I consider myself a good read of people. 50-75% of the time I’m spot on (That’s 25-50% spot off).  It leads me to an occasional empathy-challenged state. A penny whistle can tip the balance.

Happy Father’s Day all you fathers.  I love the father in my sons. Here’s to you, Cliff, a faithful reader of this blog. You’ll be missed!

Bad experience? Now what?

By Advocate, Caregiver, Consumer, ePatient, Leader No Comments

I read a post this week on the Society of Participatory Medicine’s blog about a nightmare attempt to obtain medical appointments as new patients. You’ve faced the poor listening skills, conflicting information about the availability of appointments, lack of sharing information about you within the clinic or insurance company, poor or no follow-up, waiting, waiting, waiting, that the author describes.

I’ve dealt with it, too, as a patient, caregiver, clinician, and quality management leader. So, how do health care clinics and insurance companies know about the challenges their patients/customers live through? The most common is through surveys. Surveys are blunt (not sharp) and fairly useless. Most health plans require clinics to administer the CGAHPS Clinician and Group Survey. Three questions on the survey include:

  1. Patient got appointment for urgent care as soon as needed
  2. Patient got appointment for non-urgent care as soon as needed
  3. Patient got answer to medical question the same day he/she contacted provider’s office

You can answer Never, Sometimes, Usually, Always.

Most health plans survey patients about health plan service:

  1. In the last 12 months, when you needed care right away, how often did you get care as soon as you needed?
  2. In the last 12 months, how often did you get an appointment for a check-up or routine care at a doctor’s office or clinic as soon as you needed?
  3. In the last 12 months, how often was it easy to get the care, tests, or treatment you needed?

See, not very informative. A score might be more than 80% of patients say Usually or Always? That could mean that 19 of 100 people responding are unhappy with their experience. Wow. How can anything be changed based on that result? Read More

Precision Prism

By Advocate, Caregiver, ePatient, Informaticist, Researcher 2 Comments

I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. Read More