Saturday, March 6, 2010

Unexpected take aways from the E Patient Movement

This post was started on February 19th and has been updated and reposted on March 6

Over the year and especially in the last several months through my meanderings and activity on Twitter I have crossed paths and have been honored to meet and converse with several people engaged in the "Epatient" movement a.k.a. Patient 2.0, which is really about how patients and patient advocates are partnering with their doctors to design/modify courses of treatments. They often using medical social networking sites such as Patients Like MeACCOR, PUBMed among many many other tools to find alternative treatments that improve the quality of their life, the patient's life, if not save it (as in the case of Dave). This was recently written about in an article in Time Magazine. These activities set in the larger context of the health 2.0 movement, using technology in a variety of forms to help make healthcare better, safe, more accessible, and transparent.

It takes a lot of guts and a special doctor to engage in this progressive new form of patient/doctor relationship. For instance @ePatientDave (Dave deBronkart) attributes his survival of late stage kidney cancer to this method. Dave has become a staunch advocate of patient particiapation and access to their healthdata. You should read his blog. He is funny and adamant about making healthcare more accessible. To Quote a recent comment he made on a post about Roger Ebert. " My task, is to go around speaking at conferences .... to wake people up about the fact that bad news is likely to smack their family in the face someday, and when it does, they'll want healthcare to work really reliably".

The movement includes those like @ePatientDave  and @ReginaHolliday advocating better access to their (your) personal healthcare record (which can often be costly and impossible to get.  Regina's story is poignantly sad. Her husband's death was due to lack of adequate access to her husband's healthcare record because of the patriarchal medical system (including doctors and insurance companies).

Alan Aviars, @Aviars is a computer programmer, who is relatively disgusted with the general inoperability of EHRs and the bureaucratic encumbrances it entails to work with/on them. He is a supporter of Open Source Technology. He has his own story about the struggles of retrieving his father's medical records, luckily things went better for his family.

There are patients who actively reach out to their doctors to create a proactive involved team to address their heatlth concern. I like Christine Kraft's, humor filled yet pointed letter to her doctors about the partnership she needed to have with them to address her care. You can follow her at: @ChristineKraft. Or read her rich blog that parcels out ruminations of all things philisophical.

There are researchers who write about these topics that, I think, really bring it home, like Susannah Fox a.k.a. @Susannahfox, of the Pew Internet Research Center, who wrote a piece at the end of January called What's the point of Health 2.0 , essentially stating that technology is not the only answer, but it can be one of the tools in the toolkit to help patients acheive better outcomes. The trick is to find one or some that work for those that are less than hyper engaged patients. Remember, Felix the Cat, with his bag of tricks.

There are energetic startup folks, like Jen McCabe, @Jensmcabe, who is trying to create better health with micro-movements throughout the day in a game/challenge format, called Get Up and Move. It is a lot of fun, try it. You can do it via Twitter and  Facebook.

And, of course there is Brian Ahier, @ahier, who passionately brings insight and context to the Government meets Healthcare technology debate through his blog http://ahier.blogspot.com/ and Tweets. These issues are especially relevant because the government is spending money via the HITECH Act (Health Information Technology for Economic and Clinical Health Act) under the AARA (American Recovery and Reinvestment Act)  to support the development of EHRs (Electronic Health Care Records) that meet a set of criteria, including "meaningful use". All very complicated. If you want to learn more about this, definitely follow Brian's posts.

Finally, yesterday (now a couple weeks ago), I read a post about a woman who would not take no for an answer.  The post was called:  "Some People Don't take death for an answer" by @ePatientDave on the e-patients.network about Laurie Todd, who basically had to bootstrap her survival of a late stage appendix cancer. Her HMO who said there was no treatment for her condition. She found a source of treatment, had to fight her insurance company to pay for the treatment, and eventually won and underwent treatment and has been recovery so far since 2005.

Her story is what inspired me to write this post. Frankly, right after reading her story, I got deeply depressed. I was so impressed by her accomplishments that it brought out in me my failure to have my experimental procedures overturned.  I looked at her website and looked at the points she made about how to win an appeal. I laid awake at night going over what I missed in my recent failed insurance appeal. One for nearly 30K, I wrote three appeals for a total of 2 reams of paper (including all the supporting literature for my procedure, the procedure is the only know treatment for the condition, and it is  supported by other major insurance companies -- I had the top Aetna insurance....they paid for all other 13 surgeries, I digress). I thought I tackled the definition of experimental treatment according to her method. And, all I could do is think why was she able to make a difference and why am I not.

Then finally, I got to thinking that some of this pity party has to do with battle fatigue. Because, frankly, I am. And, that is why under these times, I try, after I have beaten myself up good, to lift my head up, to look across the horizon to see what others are doing out there. Then, I sit back and give acknowledgement to those who, through their stories, have enriched my life, given me hope, gotten me really excited about healthcare and making a difference. They have embraced a stranger, shared stories, cheered me up, made me laugh so hard, and whom I can and have learned from.  That is when I remind my ego filled self that their successes don't take anything away from me. It is not a reflection on me.

These patients and people make me realize that I am not alone, and that we are all apart and contribute to the matrix of life, inspiration, and in this case better healthcare for all. There is so much to live and fight for.  It is not a time for me to crawl into a corner.  My condition (including the bureaucratic mess) makes things difficult, but I am not going to die, unless something goes wrong in surgery, or whatever. If people who face life ending conditions can fight not only their condition but the bureaucratic machine,and  win, survive, and create transformative experiences from their battles, I should be able to muster the courage and keep on truckin, knocking down what walls I can.

I am humbly reminded that we are all connected, and in the bigger picture we suffer if we denigrate our individual  failures and successes. We need each other to keep sharing, fighting, pushing back, laughing, building a disparate and diverse community of people who deeply care about making a difference for themselves and ultimately for the better good of man.

I can now sit back and say. "It is a good day to die"-- remember that movie line?

1 comment:

Susannah said...

I'm honored to be included in your post - it's people like you who inspire me to crunch my data a little more carefully to be sure I'm getting the story right.

I've been working on a report about chronic disease for about a year that will be released in the next week, so your post is esp. poignant. This is what it's all about: unearthing a nugget of information, sharing with your peers, learning what they know, not giving up the fight, telling your story. I see it in my data and I see it in you.

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