Wednesday, May 17, 2017

Patient Experience = Yours - Coffee Break


I got this on Twitter, retweeted by someone I follow:
We'll be talking about for all of May. Tweet us your stories using !

hashtag #TreatThePerson
I Googled Advisory Board, got a pile of things.  If you're on Twitter or can get a minute on someone's, you might use the hashtag, tell it like it was.     
                          




Sunday, April 30, 2017

SEE, DOCTOR? This is Where It Hurts


Once, I was referred to a doctor who just did not like me.  He did send me to Pth, but at the end of our awkward hour, he informed me that:


"You're not good at saying what's wrong with you."

I thought he was supposed to tell me what's wrong with me.  But I think I know what he meant; Describe some pain, something that will tell me where to start, something you want to do but can't.

When I was tutoring, I remembered a girl I knew in college who drew muscles and whatever on her own skin as a study skill.  I suggested at a tutor training that there might be a place for that when the tutor and the client didn't speak the same language,


 Now I found this article  thru Twitter. 

Show, don’t tell: how visuals improve healthcare visits
By Katie McCurdy and Chethan Sarabu, MD,    (BYLINED Katie McCurdy.)


The banner of the article was just very simple line drawing, like a smart kid could draw (of a doctor's office.  BINGO.  I wanted to draw too-tall waiting room chairs and how they cut off my circulation.  But the bylined author, Katie McCurdy is not about furniture, she's sharing how pictures can give a trainload of our information to the doctor - and in a picture of how one symptom, one day, one weather change may cross-affect other ills, other tests.

 McCurdy has drawn an elaborate time line chart; symptoms, felt or diagnosed, overlaid on each other day by day   I see this as valuable for so many reasons - each day shows a relationship of symptoms, so if there's an effect between two symptoms, it shows.   I hope you can find the article to see how this looks: with one major problem in pale color, the others can be line drawn on top of it.  Tests and other affecting factors can be written in the margin.

     If I could learn to do this with my colored pencils - 
 it might take the place of even an hour of talking to the doctor. 
 He could see for himself what aggravated a pain, affected a  test.

    
A help for people like me - a lumbar fusion that affects arthritis and circulation and more...   a dermatitis affects my eye infection; and do my sinuses also affect my eyes. 


Dr. Sarabu, the other author,  is a pediatrician.  He understands dealing with a kid's vocabulary, including scared vocabulary.  We might be surprised how kids can draw the hurt times and place -  just what  doctor needs to know.  

And Yes, adults have scared vocabulary days.  I sometimes do,  and did when that voice on the phone said "cancer."

He also mentions how visuals can help the doctor.  (So we don't feel funny bringing in these charts and pictures.)

 There is so much more covered here.  Including a reference to " a long history of surgeons adding paper drawings to the chart to better describe the details of the surgery they performed."

Even if we don't chart (I don't,) McCurdy shows us her very simple "paper doll views" that we can do.  One front view sketch can show where it hurt Monday, one for Friday. a different one for Wednesday.  Could show ailments like Arthritis that stab  Tuesday morning, then disappear for days.

She has a photo of how she arranged those paper doll  "day" sketches in order before the doctor even got into the office.    Did this work for Katie and the doctor?

"I felt that she heard me, 
and she ordered a bunch of tests
 based on the symptoms I was having."   

 There is even a worksheet you can copy to start your own "record."

   I see this as a way to "engage" our doctors and to show that we are and have been engaged.


(Medium) @Medium  https://medium.com/@katiemccurdy/show-dont-tell-how-visuals-improve-healthcare-visits-1b994f7fd90e





Saturday, April 29, 2017

COFFEE BREAK - From Kaiser Health News


Have you seen/read this?

Widespread Hype Gives False Hope To Many Cancer Patients

 
For me, the interesting thing about this article is: 
 just reading and comparing what doctors say versus what medicine manufacturers say.

Saturday, April 22, 2017

RIGHT NOW, Even if you hate science, READ THIS COFFEE BREAK

At least read part of it.  Do.

Five reasons blog posts are of higher scientific quality than journal articles via


With her opening shot at glittering generalizations and the case she makes against other journal no-noes,,, how could I resist this article?

Friday, April 21, 2017

FRAILTY -Your mom doesn't need it. Let's prevent it. - MIDNIGHT SPECIAL


 Frailty is probably defined differently by just about every one.  Someone I know whose arthritis is limited even some small pleasures has been considered frail.  Perhaps among many doctors it's when too many things stop working at once, enough to limit our getting around and taking any care of ourselves.

British Geriatric Society had an article on the 21st...

"Frailty is the most problematic expression of population ageing”

In which a geriatrician talked of what we must do.  The approach seemed very general and low on avoidance or prevention, to me.

OK, since it's my blog, I also need to say (again) when I was in college, glittering generalizations (as in not supported with facts) would get you an F.  No do overs..   I'm seeing articles on my pet subjects (aging is one, of course) that are loaded with generalizations and leave me knowing nothing new and nothing to do.

So I'm taking the liberty of sharing my reply to that geriatrician's article:

 Margaret Fleming on 22/04/2017 at 1:40 am said:W



Your comment is awaiting moderation. 

I need more of an overview, more specifics on what is frailty, and on why we have not been acting earlier (I’ve had two courses of PTh in the four years since lumbar fusion.) How we should be acting to prevent every bit as much as to treat.

Your comments to my thoughts here are welcome.
I wish you health.

Thursday, April 13, 2017

US NEWS: FALSE NEGATIVES, ...Not Whole Story

With all possible respect, must say I'm disappointed in the US News "False Negatives, False Positives" article. today.

This positive/negative issue has been discussed by leaders in the field.  US News could have called on more of them instead of starting by quoting Komen.

Then, only one doctor from a college health center (UF).   Dr. Shah's list for next steps from bad mammo “after an abnormal mammogram, the next step is a sonogram, a physical exam and eventually they may need an excisional biopsy” does not reflect practice everywhere.

Instead of ultrasound (the test that produces a  sonogram,) OR excisional biopsy, I was  persuaded to have a

stereotactic needle biopsy.  It uses image guidance
 to tell the "needle" where to take a small sample.

 The tech providing the images to the doctor had recently worked to teach others to use the image technology.  I wasn't delighted by it, but it was better than traditional "knife" biopsy.  It did detect a cancer, and made me feel okay to meet the cancer surgeon.  


 The uspreventiveservicestaskforce.org. was one place quoted as having changed
 their recommendations for screening.   I don't know a lot about them, I admit.

The main benefit I see from the article is:  It made me wonder why no other hospitals are included.  Are they all pushing screening?  Or are more hospitals than realized in controversy on what to do after DCIS diagnosis.  If anything.

As one who had surgery, radiation, and now tamoxifen for DCIS,  I'm still looking up what hospitals do what.  My surgeon said I could do nothing if I chose!  At that time, as far as I knew, that was a radical stand.  He then recommended I meet a certain radiation oncologist who, I feel, pushed me (or downright pressured me) into radiation.  I had, however seen some figures from one hospital that later led me to think the radiation might be good, especially after I saw my path report from surgery.
(Have I told you that story way too many times?)

Would be interested in your feedback if you read the US News article.

I wish you health.

Tuesday, April 4, 2017

SK CANCER BASKET STUDY REPORT






#AACR17: Basket Trial for Experimental Drug Shows Promising Early Results


First, at this week's press conference: David Hyman, MD, from presented data from a phase II basket trial.

I'm going to quote heavily here from the article's intro to the story of SUMMIT phase 2 study.:

"Neratinib,  an experimental drug developed to target certain mutations that drive cancer growth, is showing promise for treating several types of cancer. The findings from a phase II study were presented at the 2017 AACR Annual Meeting."

" Basket trials are based on the idea that cancers originating in different parts of the body may carry the same genetic mutations.


  • Neratinib, the drug in this study, targets mutations in a protein called HER2. 
  • Researchers think the drug will work even better if it’s combined with other therapies".

  • (Not the same HER2 we've been thinking of in breast cancer.)




  • Breast Cancer, cervical cancer, and biliary cancer showed the best results - some tumors shrunk, some stopped growing.  Which leads us to a story from Dr. Robin Gillespie, a scientist who has taken the drug for two years!

    After chemo and having a lung removed, she had no other conventional choices.  She was tested for mutations that might qualify her for a clinical trial, she came to SK. 

    Metastatic since 2011:


    Her tumors have stopped growingShe has almost no side effectsShe can take the medicine as pills You might enjoy her study - and have a look at the whole article.
    I wish you health.


    https://www.mskcc.org/blog/aacr17-novel-trial-experimental-drug-shows-promising-early-results?utm_source=Twitter&utm_medium=Organic&utm_campaign=040217PhotoAACRHyman&utm_content=Research&sf67394656=1