Do I need my data ASAP to be an empowered e-Patient?

When I first googled "endocrine" and my symptoms after being told by my PCP that whatever it was I had was thus related, I found the Cushing's Help support group. It was with the input of the members of the support boards there I found out late-night serum cortisol was one way to test for Cushing's Disease. So, I convinced my PCP to order one for me. She did, but with the caveat "I don't know where you will get this done at that time of the night!". I did convince the large hospital lab to do it for me after calling various labs for two days.

When my PCP got the results, her nurse called with a "it's normal" (left on my voice mail). I didn't question them. Long story short, several months later the same CH support folks told me I should get my records because often they contained information I was never told. I had never questioned anything up to this point. So, I requested and paid for my records from this doctor. Close to $50 and almost 30 days later, I went through them. A lot of things surprised me. One more than anything:

What? I had a 9.7 ug/dL serum cortisol at 11:00 PM?

The lab ranges on the report were for 4:00 PM. Serum cortisol ranges have only been established for 8:00 AM, 4:00 PM and around midnight. Midnight serum cortisol should be close to zero. Since few labs ever draw the midnight serum cortisol, they don't put the ranges on the lab reports. My PCP erroneously assumed the range was correct and my test was normal.

You can see by my scrambled notes on my lap, I was anxious to correct this. I faxed a copy of this report to my PCP with my annotations, and also left a message. She did not accept email. She was shocked and nicely ordered more for me to do, and I had a lot more high results after that.

All of this is important to me today because of an ongoing discussion on e-patients.net: Health Sites: Some Are More Equal Than Others . If I had asked for and received my "data" sooner, I would not have wasted months with no testing. I also would not have known to do that as quickly without input from support folks. This brings the question in my mind:

Do I need my data asap to be an empowered e-Patient?

Maybe. We need to be very careful about assumptions we make from our own experiences. Everyone does not have the same experience, nor is every support need the same. It is very hard to be objective in a subjective world. In my world, I believe I do.

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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:

The Power of Online Communities and Support Groups

I witnessed a miracle today. I can't even tell you much about it because it isn't my information to share without permission from the parties involved. I can tell you it is something that would never have happened without the loving, caring, EMPOWERED support of an online community on the Cushing's Help message boards.

You see, people got involved. Real people. People who know the illness, who know the doctors, who know where to turn for help. These folks are empowered on their own, but man, when they come together and work together, miracles are wrought. There is no way a doctor-centered site can give the information and resources the Cushing's community gives. It's simply impossible to do that for everything about which any one site tries to give information.

The body of knowledge that our support group has and shares with each other is so abundant with not one, not ten, but hundreds (maybe thousands) of caring, knowledgeable folks who read and share research, share what the good doctors have told them, and share who these good doctors are, we together know the symptoms/signs of every facet of these incredibly complex endocrine diseases even better than the doctors do (with the exception of a very few).

We know the new trials, the new research, the new methods before most doctors. We know what has worked and what hasn't. We know the side effects, the bad that goes with the good in treatment, and what the options are. We know that if we need to know something, we can post it and someone will know someone who knows. In other words, there is no way one site CAN do what any of the wonderful communities like the Cushing's Help site do. Never. I can't put it all on my blog, no matter how hard I try. But if 100's of us (1000's, actually, of us) post on one site, we CAN be effective. It's the nature of what works. That's the model which works.

I hope I can tell you about this miracle someday soon. I want you to be as blessed as I am with it. This is the hope for the future of empowered e-patients--not doctor-driven, encyclopedic sites, but community-centered, real-patient sites.

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Patients First: Twitter Transcript

From the first tweet by Dr. Val...

Medbloggers and congressman discuss healthcare reform at the National Press Club today 9am-12pm ET. Follow #patientsfirst for live coverage.

....to the multitude of tweets from participants and the audience, it was an intense and vibrant conversation. The tweets of those on Twitter were in the background as those on the panel gave their responses.

I missed it. I was working and couldn't watch. But I wanted to read the thread as it happened, in the order it happened. So I compiled it and here it is for those of you who missed it or want to read what others had to say.

To those who participated and/or tweeted, I want to say a great big "THANK YOU!!"

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UPDATE: Here are some blog posts/links that are pertinent to this discussion. Feel free to email or comment below if there are others which I've missed:

Someone who actually knows how to put patients first

Congressman Paul Ryan's speech

Media piece about Patient's First

Dr. Rob's post about his experience

Dr. Wes' speech

Dr.Wes' wrap-up

When "Putting Patients First" is a matter of perspective

An interesting, vibrant, and on-target discussion took place on Twitter today. Dr. Rob (@doc_rob) and Dave (@ePatientDave) started discussing the event "Putting Patients First" at the National Press, hosted by Dr. Val Jones (@drval).

1. 
   ePatientDave What's wrong w this picture? The event "Putting patients first" has no patients on the panels http://bit.ly/3wc2vh 12 Jul 2009 from TweetDeck
2. 
   ePatientDave Clue: talking *about* pt-centered, w/o pts in the talks, is like Congress talking about suffrage w/o women in the talks 12 Jul 2009 from TweetDeck
3. 
   ePatientDave To be blunt about it, that approach to suffrage took nearly a century (Superb Ken Burns film http://bit.ly/PjuIH) 12 Jul 2009 from TweetDeck
4. 
   doc_rob @ePatientDave What do you want said? 12 Jul 2009 from Tweetie in reply to ePatientDave
5. 
   doc_rob re: Putting Patients First - Women's suffrage is not analogous. People who work with poor and know plight of them are worth listening to. 12 Jul 2009 from Tweetie
6. 
   doc_rob Plus, we are ALL patients in this system. I am a doctor AND a patient. I know MANY patients' hardships, not just one. I love my patients. 12 Jul 2009 from Tweetie
7. 
   ePatientDave @doc_rob Oo oo, the well clued @Doc_Rob is one of the panelists at the (impatient) Putting Pts First! Let's have a blogchat! 12 Jul 2009 from TweetDeck in reply to doc_rob
8. 
   doc_rob Healthcare workers who give a damn and ACTUALLY care for patients have had no voice up to now. I plan on advocating for them. 12 Jul 2009 from Tweetie
9. 
   ePatientDave @doc_rob Seriously, will you host that? Or should e-patients.net host it? You rock! 12 Jul 2009 from TweetDeck in reply to doc_rob

-- this quote was brought to you by quoteurl
Dr. Rob is one of the members of the panel at the event. He has been and still is taking an active interest in representing patients. As you can see below, he continues that.

1. 
   doc_rob @ePatientDave It's what I try to do all the time. I'd love to host a real discussion. Understand that not all docs are deaf to their pts. 12 Jul 2009 from Tweetie in reply to ePatientDave
2. 
   ePatientDave Thinking out loud...continuing suffrage thought: imagine male Congress discussing "impact on our process if women vote" 12 Jul 2009 from TweetDeck
3. 
   doc_rob Read http://bit.ly/MdRZQ
   to understand where I come from and what I will say. 12 Jul 2009 from Tweetie
4. 
   ePatientDave @doc_rob I do understand that. It's the "is a proxy sufficient" question. So, dude, git the party started! I'll bring some peeps. 12 Jul 2009 from TweetDeck in reply to doc_rob
5. 
   doc_rob I'll put up a post on the subject tomorrow with the intent on getting discussion and hearing opinions. 12 Jul 2009 from Tweetie
6. 
   doc_rob Nah. I'll do it today. 12 Jul 2009 from Tweetie
7. 
   ePatientDave @doc_rob btw, since the point is to contribute not rant, in our pre-talk we should include finding out what the audience thinks about 12 Jul 2009 from TweetDeck in reply to doc_rob
8. 
   doc_rob @ePatientDave How about me writing a post that says: "Tell me what you think I should talk about in Washington?" 12 Jul 2009 from Tweetie in reply to ePatientDave

-- this quote was brought to you by quoteurl
As the discussion continued, others became involved also. For the sake of brevity, I didn't include all the tweets that resulted. Dr. Bryan Vartabedian (@doctor_V) posted "We're All Patients" as a response to the tweets.

1. 
   ePatientDave Yikes: @ "Putting pts first" http://bit.ly/3wc2vh, not only no pt spkrs; Policy Expert=pharma front CMPI http://is.gd/1wbok 12 Jul 2009 from TweetDeck
2. 
   ePatientDave YikesX2: The CMPI "policy expert" warned 1/08 "Internet health searches are dangerous to public health" http://is.gd/1waKh 12 Jul 2009 from TweetDeck
3. 
   ePatientDave He's wrong - @Eysenbach did multi-year study to find "death by googling" and found ZERO cases. http://is.gd/1wbJG 12 Jul 2009 from TweetDeck
4. 
   doc_rob @ePatientDave I was nervous about that as well. Made sure we were free to say what WE felt. 12 Jul 2009 from Tweetie in reply to ePatientDave
5. 
   Doctor_V My thoughts for those who feel @drval 's Washington panel doesn't represent patients http://bit.ly/XjDo8 12 Jul 2009 from TweetDeck
6. 
   Doctor_V Hate it when patients feel we're not on their page http://bit.ly/XjDo8 12 Jul 2009 from TweetDeck
7. 
   doc_rob RT: My thoughts for those who feel @drval 's Washington panel doesn't represent patients http://bit.ly/XjDo8 (via @Doctor_V) - Agree. 12 Jul 2009 from Tweetie

Dr. Rob was true to his word, and posted his response, "Speak to Me" .

I posted one comment in Dr. V's post, and will on Dr. Rob's as soon as I have time. Trisha Torrey, a patient advocate, also posted “Putting Patients First” = No Patients (Time to go clean my room now.)". Mary Shomon (@ThyroidMary) had an excellent comment there. And Dr. Val (@drval) responded very honestly about the good intents of her efforts with this panel. (Thank you, Dr. Val).

Now is your time to respond. Go tell Dr. Rob what you want heard. Speak to him. What do you have to say about this? Do you think patients should be represented by patients? Do doctors count since at some point in their lives they will/are patients, too? Should we work as a team, not as antagonists?

What do you think? Say it. Now is the time.

(I will update with other posts on this topic as they occur. I'm sure there will be more.)