Tag

health literacy | Danny van Leeuwen Health Hats - Part 2

Engaged with Sax

By | Advocate, Caregiver, ePatient, Family man, Musician | No Comments

Shopping for a new neurologist I had three screening questions:

  • What’s your response time to emails?
  • Do you use OpenNotes?
  • How would you work with my acupuncturist?

The first doc said, ‘I don’t use email, we don’t have a portal. What are OpenNotes? What do you mean you’re shopping for a neurologist? You either want me or you’re wasting my time.’ 

The second doc said, ‘If you email me, my nurse practitioner or I will get back to you within two business days. If you need us sooner, call my office.

Of course, we have OpenNotes. If I get something wrong, let me know. I know a lot about drugs and therapeutics and how they affect groups of people. But, I don’t know anything about you. My job is to learn more about you, and we’ll test different drugs and therapeutics and see what works for you. You are an experiment of one.

Oh, you use acupuncture? You’ll have to educate me. I don’t know much about that. I’m interested in anything that helps my patients. Seems like everything works for someone. And by the way, how’d I do? We could have some fun together.’
Read More

How many words for pain?

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist | 4 Comments

There are 46 words for snow in Iceland. How many are there for physical pain in English? Googling synonyms: Suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness… I recall sitting with my mom when she was dying of pancreatic cancer, trying to understand what her pain felt like. Ma, is it sharp, dull, aching, constant, ebbing and flowing?  The more descriptors I tried to come up with, the more frustrated she became with me.  No words worked for her. Yet she tried to describe it to the hospice nurse or doctor without success.  Granted, my mom was home bound and bedridden. She was past the place where function didn’t mattered. How does your pain affect your ability to socialize and work? The way I manage my annoying neurological pains is to get to know them intimately. Meditate on the pain. Sensation, location, travel, duration, what makes it better or worse…. It takes the edge off, helps me be less freaked out and I can manage with less medication. I find my professional team intrigued by my desire to describe it in such great detail. I’m a bit of a freak. Turns out that acupuncture and mindfulness help me enough with my short bursts of radiating neurological zapping down my limbs that I don’t need medication and my function isn’t disturbed.  I recommend that you read Rosalind Joffe’s blog this week, Can You Talk About Your Chronic Pain? Read More

Disabled. Looking for Work. Reference

By | Advocate, Consumer, ePatient, Family man | 2 Comments

Here’s the reference I didn’t accept on LinkedIn:

He’s seriously annoyed with his disability, full of himself and his opinions and perceptions about life and health. Blogs every week whether or not he has anything to say. Can’t keep a job.  Has the attention span of a gnat, flitting from one thing to another. Needs significant help focusing and limiting the scope of his work. Moves way too fast, going for the latest shiny thing, tested, proven, or not. A major joiner. Set some limits for Pete’s sake. Sits on expert panels without real expertise in anything. Has to keep lists of books he’s read so he doesn’t read them again, but forgets to check his list. We’ve always done it this way is a red flag for him. He should shut up and listen for a change. Has a loose relationship with the truth. Would rather tell a good story. Needs a fact checker. Loves to say, God willing and the creek don’t rise. Where does he think he is? W Virginia?

OK, he’s sort of disabled. Takes advantage of his get-out-of-jail free handicapped parking placard. After all, he can walk a couple of blocks.   Frantically trying to stay healthy. Massage, acupuncture, chiropractic, counseling, meditation. Give it a rest already. Cut his foot with a chain saw when he was an ED nurse and paramedic. Then he went to his son’s second grade class to teach first aid  Doesn’t know the meaning of safety. A truly strange bird. Was in the movie, Woodstock, when he was 17, calling his mother. Now 63, he’s still a momma’s boy. Was in a Life magazine cover story, You’ve Come a Long Way, Buddy. Men’s Liberation. For real? Can’t lie to save his soul. Don’t know about diversity, he’s prejudiced against stupid people who can’t get anything done. Can’t stop talking about his grandkids. He’s a boring Johnny one-note. Thinks he can play saxophone.  Please!  Loves to dance – in his head. Who is he fooling? Pokémon illiterate. Just ask his grandson. Does laundry and takes out the garbage, but doesn’t cook enough. Leaves the entry way door open when it’s freezing outside.  Appreciates clean running water and weekly garbage pickup. Every week! Give it a rest already. Built a house with his wife without ever having built anything before. Lord, get some experience before you go off halfcocked. Won’t stop correcting lab technicians who ask him to confirm his birthdate that they read to him. Arrogant.  Still hot for the same woman after 40 years – get a life. Balding, needs a hat. Any hat, doesn’t care.

 

I know it’s tough to get a job as a disabled person.  But, hire this guy? Be very careful, count to 10.

Not collected? Not studied.

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist, Researcher | 2 Comments

What do people consider to be clinical data, when they’re not wearing the hat of clinician, academic, researcher, insurer or EHR vendor? We can all agree that pulse, weight, diagnosis, procedure, medication are all clinical data. But what about data that answers questions like:

  • What does feeling worse (or better) look like?
  • What works for me when I’m in pain (or scared)?
  • Where will I sleep tonight?
  • Are my kids safe? Am I?
  • Am I treated with respect?
  • Do I understand what doctors and nurses say to me?
  • Where do I go when I have a question or I forget what I’ve been told?
  • How do I get food from the grocery store?
  • How much can I afford out-of-pocket for my medicine?
  • What are the most important things in my life, for my future, for my health?
  • Can I live with this amount of pain or discomfort or indignity?
  • Do I have access to a computer or a phone?

Read More

What’s Pokeman Got to Do With It?

By | Advocate, Caregiver, Clinician, ePatient, Family man, Informaticist, Leader, Researcher | One Comment

I went to a meeting in Chinatown attended by parents with children on the autism spectrum going to Boston Public Schools. The attendees spoke Mandarin, Cantonese, Vietnamese, English, and Bureaucrat-ese. The parents helped each other advocate for services for their kids. Most only spoke one of those languages. After 2-3 minutes of speaking in one language, someone would raise their hand and there was cross-translation by the 2 or 3 people who spoke more than one language.  This repeated for about an hour.  I went home and my 7-year-old grandson tried to teach me to play Pokémon.  I understood less than I did in Chinatown.  Opa, you don’t understand this at all!! Read More

Health Literacy Month

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Researcher | 2 Comments
Last week I was describing a mutual friend to my son as pathologically optimistic. Overhearing us, my seven-year old grandson asked me what that meant.  I started in with glass half full, glass half empty. Oh, Opa, he interrupted me, I know what optimistic means, what does pathologically mean?  I was using language my grandson didn’t understand and he questioned me. I attend a weekly conference call of OpenID HEART, that I’ve written about here before, and I understand about a quarter of the discussion – very technical.  I am not as ready as my grandson to interrupt and question, even though when I have, my very basic language questions are respected and welcome.  Rather I usually take notes and ask the questions on the list offline. I often facilitate meetings. I try to pay attention to the language people use and explain acronyms or jargon.  If I see a furrowed brow, I ask the furrower if they have a question. As a direct care nurse, I made sure I created teach back moments when helping people at the center of care prepare to manage without me.
Often I have the sense that people consider literacy as a dumbing down – write to the fifth grade level, eighth grade – whatever. Many colleagues in any gig I’ve worked, say, communication sucks! I, however, am continually amazed that we can communicate at all. My friend, Helen Osborne at www.healthliteracy.com tells me that literacy is about language, age, culture, disability, emotion, and cognition (genetic and evolving).  That’s a lot to consider when communicating. My communication usually just falls out of my mouth.

Read More

Health Literacy – a Magic Lever

By | Clinician, Consumer, ePatient | No Comments
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