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Thursday, June 28, 2012

SWBAT Get Their Darn Data

Some of you have already met my daughter, Abigail (aka, @amaltheafairy on Twitter).  For others, this will be your first introduction to her.  What follows is her first guest post on this blog.  The words are her own, with a little editing help from dad.


Once upon a time there was a girl whose father worked on healthcare standards. He told her allllll about the problems and ways he thought they could be fixed.

“People are having medical issues because they don’t know to ask for their records, and when they do, they don’t understand what they’re looking at!” Said her father. 
“Well, daddy, how are we supposed to know to do something if we’ve never been taught to do it? I couldn’t do anything without help until I figured it out by myself, and you taught ME to ask for my records. If people have never been taught, why not put it in a school class to teach them?”

That’s something like how it went.

As long as I can remember my dad’s always been teaching me about his job, and what he does, and what it means to be a “standards geek”. He gets to meet these amazing people and work with them. People like Regina Holliday and Dr. Farzad Mostashari. These amazing people and my father were called to a “SECRET WHITHOUSE MEETING” to discuss Meaningful Use Stage 3, problems with Stage 2, and the advances different companies are making to make it easier for people to access their records. At one point, we got to the question of why we are trying to make it easier for people to access their records, but not telling them they can?

It is a fair question. If people aren’t asking for them, and aren’t looking at them then, shouldn’t we work on making sure that they know how to look for them, and know how important understanding their records can be? With that understanding comes better knowledge on how to help themselves. Why not try to put this knowledge into our high school health and wellness curriculum, or better yet put it in a class of its own?

When we are taught something in school, it tends to be something we’ll use. We have a civics class to teach us how to be good citizens, and a class on child care and life science for parenting, all are useful classes for our future. We were never taught to ask for our records, we were never taught that knowing your records could change the way your doctor treated you. We need to know this before it becomes too late. For some, they couldn’t insure their family because they had a preexisting condition. No one told them, that they wouldn’t get insurance because they needed some treatment or medication as a teen or young adult. When were you taught that understanding your records could prevent that and many other situations like that? Even with this understanding, when were you told that a doctor could make mistakes you could catch? Such as, something copied down wrong in your record, something that didn’t happen or a surgery that never took place…

If such a class could be taught in the high schools or maybe even the junior highs and middle schools, the generation to come could learn this. We would take it home, this knowledge, to our parents, who could bring it into caring for our grandparents. It would start a chain reaction with us, tomorrow’s children. What we need to teach in our own schools are some of these major issues with healthcare. Give us the knowledge and the power and I know from experience we will want to act for our own good!

I’ve already discussed this with my dad, Motorcycle Guy, and I’ve even discussed it with my State Representative, Walter Timilty. I’ve told him my idea and I’ve told it to everyone at that “Secret Whitehouse Meeting”, and I’ve even asked some of my friends from school about what they would think of a class like that. So far almost all have thought it was a good idea.

A concern my friends had, like all typical middle-schoolers, soon high-schoolers, was “how hard would a class like that be,” and “how hard would the questions and tests be?” As I was thinking on that, it occurred to me that I don't have the slightest idea as to what the questions would be. Mainly it would be the students’ main rights under HIPAA, and what each part of their records meant, as well as what could be in each part of their records, but I don't know enough to dictate every question on a test or even what could be discussed in class each day.

In my state, the law states that there has to be a curriculum framework for each class.  Would we have to create a whole new curriculum for a class on something related to health and wellness or could we just add it to the health and wellness curriculum already in place?

The Massachusetts Comprehensive Health Curriculum Framework, already has what should be covered in 6th--12th grade.  I think these are important points:
12.7 Evaluate both the physical effectiveness and cost effectiveness of health care products.
12.12 Identify information needed to select and maintain relationships with health care providers to meet the needs of individuals and family members.
12.17 Describe the individual's responsibility to be a wise and informed consumer, including how to plan a budget that includes a spending and savings plan.
12.19 Identify procedures for making consumer complaints, such as determining if/when a complaint is warranted, gathering relevant information, and identifying the appropriate agencies to contact.
I rewrote them the way my teachers for my core subjects used to do it.  SWBAT means "Students will be able to".
12.7 SWBAT evaluate both physical effectiveness and cost effectiveness of health care products.
12.12 SWBAT identify information needed to select and maintain a relationship with health care providers to meet the needs of individuals and family members.
12.17 SWBAT describe the individual’s responsibility to be a wise and informed consumer, including how to plan a budget that includes a spending and savings plan
12.19 SWBAT identify procedures for making consumer complaints, such as determining if/when a complaint is warranted, gathering relevant information, and identifying the appropriate agencies to contact.
The standards for this curriculum could easily be used to include lessons on

  • Access to your health record, 
  • Understanding and reading your health record, 
  • Fixing any mistakes in your health record and 
  • The use of your health record. 

Everything we need is already in front of us. Why don't we give it a shot and try for a better health care experience!  That would be another Epic Win.

^.^ #SWBAT

8 comments:

  1. You are a great asset to your cause. Well written and clearly you are going to make progress. I hope you will continue to keep us informed. Your Dad will need to improve his writing to continue to standout.

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  2. Bravo! I would add to your curriculum "Understanding the risks and benefits of sharing your health information by participating in electronic Health Information Exchange".

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    1. I would agree with two small changes: One of the great comments during the "Secret White House" meeting that my daughter and I attended was about how we over-emphasize risk to the detriment of benefit. Also HIE is but one way to share, there are also ways in which you can share information, e.g., online communities.

      So it would become:
      SWBAT understand the benefits and risks of sharing health information in any fashion.

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  3. Outstanding, Abigail! Keith, you must be extremely proud of her maturity, initiative, and articulateness. Only in middle school? That's pretty amazing. This is a great example of "patient and family engagement" to borrow a phrase from meaningful use. This is an example where "push" (of technology or standards) seems to have been the approach thus far, but where I think "pull" (consumer demand) could do a lot more, and what better place to start than with the younger generation, so that it starts a "chain reaction?"

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    Replies
    1. Just finished Middle School, headed to High School next year, and yes, extremely proud.

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  4. Fantastic! CWBAT...consumers will be able to, or PWBAT...patients...
    Thanks for a great idea and a needed revolution.
    Keep. On. Blogging.

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  5. Also on the patient engagement front, see this article by an Information Week senior writer, with some worthwhile comments.

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