New PHR technology too much for my parent's generation? I don't think so!

I was reading and responding to Regina Holliday's latest post, Rosa Parks in Health Care, when I read this:

The paper transfer has been used for years. The poor, the illiterate and elderly were comfortable with the current system and would not be able to understand a new electronic version. Those favoring change pointed out the favorable outcome of less wait time, faster processing and ability to aggregate data. All these argument fluttered around us, as we said goodbye to the paper version of the National Capital Metrobus transfer and hello to the Metro Smartrip Card.

It occurred to me that my parent's generation have adapted to a lot of technology over the years.  My parents were born in 1937. I decided to see if I could list just some of the things they have adopted and adapted to during their lives since then:

1. electricity and all that came with it
2. light bulbs
3. ball point pen
4. ViewMaster
5. fiberglass
6. electric tools
7. vacuum cleaner
8. indoor plumbing
9. indoor toilets
10. home cameras
11. polaroid camera
12. modern refrigerator (they used the spring house until then)
13. electric washer and dryer (I remember my mother using a wringer washer and hanging clothes on the line)
14. widespread use of the telephone
15. jukebox
16. record player
17. electric skillets, mixers, and more
18. television
19. communications satellites
20. color television
21. 8-track players
22. cassette player
23. DNA sequencing/typing
24. video cameras
25. walkman
26. use of x-ray and CD imaging
27. Magnetic resonance imaging
28. credit cards
29. air travel
30. crockpots
31. electric (home) hair dryers, curling irons, etc.
32. bar codes
33. calculators
34. scientific calculators
35. batteries
36. rechargeable batteries
37. solar powered chargers and calculators (and more)
38. digital thermometers
39. super glue
40. post-it notes
41. velcro
42. integrated circuits
43. turbo-charged engines
44. jet engines
45. riding mowers
46. leaf blowers
47. edge trimmers and weed eaters
48. pacemakers
49. typewriter
50. electric typewriter
51. remote controls
52. word processors
53. electric dishwashers
54. home air conditioning (window units and central air)
55. video games
56. disposable camera
57. medical imaging of all sorts
58. computer
59. microchips
60. VCR (and even the BETA players)
61. camcorders
62. cable tv
63. satellite tv
64. PDA's
65. CD's and CD players
66. digital cameras
67. self-cleaning ovens
68. icemakers
69. microwave oven
70. ATMs and ATM cards
71. DVDs and DVD players
72. mp3 players
73. cell phones
74. smart phones
75. Wii (I can't forget that!)

And that's just to start.  For all that is listed above, we could all add a lot more, I'm sure.  What I'm trying to say is my parents' generation CAN adapt to PHRs/EMRs if they wish, especially if the technology is developed to work with the cell phone users*. They've adapted to and adopted a whole lot more than we have.   My parents can even tether a phone to their laptop while traveling in their RV.  They know where/how to find the best hot spots, too. 

We must remember that in 10 years there will be a whole new, technology-savvy group moving into the 65+ demographic.   Are we prepared for that?

*According to research done by PewInternet, 83% of adults have cell phones. 

Two easy ways to blog without (almost) any technical skills!

For those of you who have said, "I'd like to blog about...." but think you don't have the skills to set up a blog, I have some suggestions:

1. Try a photoblog:  One of the simplest ways to tell your story is through pictures.  One of the easiest ways to do this is to use http://365project.org/ .  Pictures are easily uploaded and you can caption them plus describe what is happening.  Another option is to use a flickr account.
   
2. Use Posterous:  Posterous is as simple as emailing.  You email what you want to say to your posterous blog. There are some easy choices of style and color for you when you set up your blog, but you can just leave "as is" for a neat, professional-looking site. 
   
   

Some nice examples of posterous blogs are rlbate's posterous and MaryO's posterous.

You CAN blog!  Start your own, and show me. I can't wait to see it.

My picks for the top 10 e-Patients you should be following on Twitter

In no particular order:

1. @ePatientDave:  Dave deBronkart said "Gimme my damn data" and hasn't shut up since.  Seriously, he was talking a long time before that, but for some reason, folks really listened when he posted about his experience trying to get his own data.  (He's also on the editorial team for the new Journal of Participatory Medicine)
2. @TrishaTorrey:  Every patient's advocate, she has written a new book entitled "You Bet Your Life! The 10 MistakesEvery Patient Makes" which you can find on her blog.  Trisha's story about her own experiences echo so many.
3. @thyroidmary:  Mary Shomon is THE foremost patient advocate for those of us with thyroid problems.  She has kept all of us who use the dessicated T3/T4 combos for thyroid replacement in the loop with the shortages and how to find/get it.
4. @accarmichael: Co-founder of Cure Together and a chronic pain survivor, Alexandra Carmichael and her partners are making huge strides documenting patient data and tying it all together.  YOU can make a difference by joining and entering your data.  And you will learn something from it, too, I promise.
5. @cushings:  If you want to keep up with what is happening in the "Cushing's Help" world, and with everything anyone is doing related to Cushing's, Mary O'Connor is the woman to follow.  Founder and owner of the cushings-help.com website and message boards, this woman has done more for Cushing's awareness, support, and education than anyone.
6. @SusannahFox: Susannah keeps up with what is happening with technology and healthcare. A PewInternet researcher, she tweets very valuable information. I'm not sure she is technically an e-patient, but close enough! Everyone is at some point in life.
7. @gfry:  Gilles Frydman is not a prolific tweeter.  But boy, when he has something to say, it's worth hearing.  ACOR founder and on the editorial board of the new Journal of Participatory Medicine, he is a strong advocate for patients.
8. @jensmccabe:  I can't keep up with her because she runs circles around the rest of us, but Jen is an up-and-coming entrepreneur/e-patient eager to solve new problems that we deal with as patients, and taking a new look at old problems. She also has an interesting perspective on numerous health issues. Although I give her a hard time on her numerous blogs/posts, I have the utmost admiration and respect for her.  Keep an eye on her. She's going to effect change.
9. @ReginaHolliday:  Regina's bio on twitter "Regina Holliday is a medical advocate muralist. She is using paint and brushes to promote health reform and patient's rights" does not do justice to who she really is.  To really understand, read her story.  I hope to meet her some day.  She is telling the world how it really is.
10. @carlosrizo:  MD turned e-patient and entrepreneur, Carlos is first and foremost an e-patient. In fact, I often forget he is a doctor.  I think he does, too,  when tweeting things such as "Rehearsing my health's "elevator pitch" for my doctor's appointment today. When 15 min is all I have (sadly) every minute counts."  He gets it. 

If you aren't familiar with the term "e-Patient" then http://e-patients.net/ has a lot of wonderful information.  The wikipedia definition says, "e-patients are increasingly active in their care and are demonstrating the power of the Participatory Medicine or Health 2.0 / Medicine 2.0[1]. model of care. They are equipped, enabled, empowered, engaged, equals, emancipated and experts."  My favorite definition comes from @gfry, though:

Revisiting "Bariatric surgery: Not the answer for obesity and "hidden" Cushing's Syndrome"

In February 2009, I posted Bariatric surgery: Not the answer for obesity and "hidden" Cushing's Syndrome .  There are several really good comments below the article, but this one is new, and I think anyone considering bariatric surgery should read what this person has to say: 

Anonymous said...


On Oct 23, 2009 I had Gastric RouxEnY Bypass surgery because all of my doctors: my general dr/my pain mgt dr/my spinal fusion (2) dr/ my chronic pain therapist ALL told me that Cushings Syndrome was soooo RARE that I just needed to lose this excess weight and ALL of my symptoms would disappear or improve. So, like a good patient, I had the bypass.

It is 10 weeks post-op and I have lost 40 lbs (230 to 190, 5'7" tall, 39 yrs old)-this could be considered slow by some RNY patients. On Nov. 11, 2009 (only 2 weeks post-op) my new doctor, a young, female endocrinologist got my dexamethasome (1mg) results (finally) and loosely diagnosed me with Cushings. I have since had another 1mg test and an 8mg test, these also suggesting Cushings. I am scheduled for a MRI 2 days from today to see if we can see the size/location of the tumor on my pituitary.

For more than 2 years I have self-diagnosed my Cushings. I had EVERY symptom, and MORE, except the straie (SP?)(horrible red stretch marks). So, each time a 24hr urine-free cortisol test came back in the 'normal' range, I began to agree with my Dr's- my worsening symptoms must be due to growing obesity. I decided that I just needed to 'move on' with my life and accept the fact that I ate bad and did not exercise (due to my 4 back surgeries in 4 years, and my severe depression).

Well, if I have my way, my tomb stone will read: I told you I was sick!

I do not know if I will regret the bypass surgery down the road because I am not certain what that 'road' will entail yet.

At my one month gastric check up, upon hearing my news, my Dr was upset that I had never mentioned the word Cushings to him. (Again, I was having the gastric b/c Cushings was too RARE for my overweight self to have, so, it never occurred to me to mention it to him...) He also said "I would have never operated on you if I had thought you had Cushings". Later in our conversation he told me of his concern that once my Cushings was under control, that I would be too skinny because I had gastric.

I hope this comment helps someone out there.

Bless you, Anonymous.  I sure hope things work out for you.  Thank you so much for sharing with us.

Most Read Posts for 2009

Although not all were written in 2009, listed below are the most read posts in this past year with a brief excerpt from each. To read the entire post, simply click on the title of each one.  Thank you for reading and sharing with me this year.

1. Vitamin D:  "Normal isn't normal anymore:   Dr. Bruce Hollis' latest published research on Vitamin D questions the definition of "normal". Since many of us with Cushing's Disease and/or other endocrine problems suffer with extremely low Vitamin D ranges, defining a normal range is very important.
   
   Vitamin D is not really a vitamin. It is a steriod and exists in two forms, D2 (ergocalciferol) and D3 (cholecalciferol). D3 is the more active form and is found naturally in the human body. D2 is derived from radiating fungi and is only found in very small amounts in the body. Most over-the-counter (OTC) supplements use the D2 form rather than D3. Also, there are two prescription forms of it: Drisdol and Calciferol. D3 may be purchased without a prescription. (This is a Research Blogging post)
   
   
2. Martha's Story: (Martha died in 2008 due to complications from Cushing's Disease.)  Stacey and Martha had been together for 11 years. During most of those years Martha struggled with IBS and acid reflux. About 6 years ago, they noticed her cheeks were getting "bigger" but her legs and arms were very thin. In fact, until the last 5 years she was a thin/normal woman. Stacey said she would squeeze Martha’s cheeks saying "look at those chipmunk cheeks".
   
   Five years ago her health started dramatically changing. She had an ovarian cyst burst, then after problematic periods she had a fibroid tumor removed and a D&C performed. After that she never had her period. Her GP told her she was going through early menopause. Her strength was never the same. Stacey and Martha thought it was because she was pushing herself too hard with a long commute and getting up very early in the morning....
   
   
3. Dynamic MR Imaging of the Pituitary:  Same tools, different technique (but wow, what a difference!): Those of us who have suffered or still suffer with pituitary adenomas have heard way too many times "your MRI is normal". I did, for years. Yet, I ultimately did have a proven adenoma which caused my Cushing's disease. If the MRI had shown even an inkling of the tumor to the trained eye, perhaps a doctor would have taken my symptoms more seriously....
   
   ...What makes a dynamic MRI different from any MRI using contrast?
   Typically, a series of images are taken prior to contrast and then the MR imaging is stopped while contrast is injected. Once that is finished...
   
   
4. Grand Rounds Volume 6, Number 4:  When I chose the theme for this week's Grand Rounds, I chose it because it is near and dear to my heart. Before I knew what it was called, I was looking for a "participatory medicine" model. Long before I heard the term "ePatient", I was one.
   
   Since the Society for Participatory Medicine is the next evolution of the group at http://e-patients.net/, it makes sense to start by having them spell it out. Their new Journal of Participatory Medicine is launching next week at Connected Health, and Co-Editors-In-Chief (a physician and a patient, of course) explain the purpose clearly on the Society's blog, in Why the Journal of Participatory Medicine?
   
   
5. Stars Go Blue: "Sam[antha] lay dying for 13 hours with Seattle CHildren's endocrinologists standing around watching and wondering why the continual 15 mg [of cortef] they were giving her wasn't working."
   
   
6. Central Hypothyroidism:  A Cushing's Disease problem, too: Since approximately 80% of Cushing's Disease/Syndrome is caused by a pituitary adenoma, other hormones produced by the interaction of the hypothalamic-pituitary-adrenal (HPA) axis are often deficient. This includes thyroid-stimulating hormone (TSH).
   
   
   Primary hypothyroidism is often detected by elevated TSH values. This is due to the normal feedback-loop of the HPA axis. Central hypothyroidism (CH), however, is not typically detected by measuring TSH which is low due to a disruption of the pituitary's stimulus and is not produced as needed. The most common cause is a pituitary adenoma.
   
   
   In Mechanisms Related to the Pathophysiology and Management of Central Hypothyroidism, the authors state, "Given that the prevalence of pituitary adenomas in the general population is greater than 10%, the true prevalence of CH might be much higher than that reported". When speaking of the method of measuring TSH levels alone, they say this "approach works, however, only if the hypothalamic-pituitary-thyroid axis is normal. Conversely, the strategy of first-line TSH measurement can miss patients with CH." (This is a Research Blogging post)
   
   
   
7. Cushing's:  An invisible illness, too:  We are zebras, but our stripes remain hidden behind loose clothing and no one peeks beneath....
   
   
8. My health care records:  My property:  I want my health records. I believe they are mine. And I want to be able to access them electronically. Frankly, I'd like to access them, amend them (or at least notate and comment on them), and share them with those I choose.
   
   Recently, Dr. Rob posted about how this made him feel...
   
   
9. We need an elephant specialist! :  He walked into the exam room, introduced himself, and as he sat down,
   he asked, "Has anyone ever suggested you might have Cushing's disease or Cushing's syndrome?"
   
   My name's Kim, and I'm 49 years old. I have two children, two grandchildren, and two full-time jobs. On the weekdays, I'm a writer and editor specializing in education issues; evenings and weekends, I'm marketing director at an international and arthouse movie theater. I had to pick up this second job to pay for the medical expenses not covered by my health insurance. And, as you may know, there are a lot of medical expenses involved in this
   disease/syndrome....
   
   
10. Bariatric surgery: Not the answer for obesity and "hidden" Cushing's Syndrome: Although I'm posting this as research (which it is), this is also personal for me. I was told by multiple doctors to have bariatric surgery. This included endocrinologists. I even went as far as making an appointment with a bariatric surgeon, going through the pre-surgical "talk" and consult, and asking a lot of questions. I didn't find him cognizant of the endocrine problems that might hinder recovery with bariatric surgery. Frankly, he dismissed my questions and walked out on me.
    
    I'm glad I did my research. And now, the medical community is looking at the repercussions of bariatric surgery to control weight without first testing for endocrine-related causes, especially Cushing's Syndrome.... (This is a Research Blogging post)

Actually, the "Testing 101" series is read more than all the others, but those are very old posts, so I didn't include them in my list.  Also, the group of posts dealing with radiosurgery are read a lot. 

Happy New Year to all....