Wednesday, January 30, 2013

STEP ASIDE DR GOOGLE: ENTER MEDIVIZOR

We've all done it.  We all DO it.  We've undoubtedly all been ADMONISHED by at least one good friend.  Don't.Do.It.

Something isn't quite right.  I can recall a summer afternoon not so long ago when I tripped or slipped or lost my balance. It didn't happen once.  It wasn't twice.  It was the third time that send me over the edge.  In the first place, I'm lucky my wrist didn't snap like a toothpick.  Mostly, I was petrified.  I was standing and then I was on the ground.  No dizziness.  No blackout.  Nothing.  Just standing and then down.

Instinctively, I grabbed the phone to call my "talk me off the ledge" buddy.  When she jumped into advocacy mode and started talking brain MRI, I very lovingly assaulted her with a barrage of curses that would have made my very colorful grandmother quite proud.  She's a great friend.  She knew to back right off and just hand hold.  "Ok, so we won't schedule an MRI."

In the next sentence, she began talking about a spa.  I want to return to Miraval.  I'm more of a sea person, but the mountains in Tucson were captivating and the grounds are serene.  Plus, I have visions of that zipline.  The conversation began to sound a bit bucket-list-ish and my dear buddy may have heard a change in the tone of my voice.  Or, she may have heard me pecking on the keyboard.

"AnneMarie, Get OFF THE INTERNET."  Voice slightly louder, "Are you listening to me?  There is nothing wrong with you.  Shut the laptop RIGHT this second!"  I see you all nodding in agreement.  You KNOW exactly what I mean.

Enter:  Dr. Google.

And suddenly, things begin to get a bit dicey.  I use the internet responsibly.  Unless I'm having a twitter war, which, incidentally, happened last night and I'm still a bit stunned.  Another day.  Let's just say that I may **think** I know it all, but I **know** that others know their all, too.  I don't impose my will on others and I will never understand how a person can barge into a conversation with a comment and then begin to make remarks that are haughty and utterly ridiculous.  I have about as much patience for comments that fly in the face of logic as I have for those splashy headlines.

I'm way off point.  And yes, there is a point and it's a rather important point.  I was introduced to a new website within the past two weeks.  Here is where I would normally go check my email account to nail down exactly when I first learned of the site because minutiae is what I seem to do best these days but I'm refraining/restraining myself.

This is big picture and I'm quite impressed with this big picture and I'm even more impressed by this website.  Medivizor. There are endless resources on the internet to find medical information.  Used responsibly, the power of the most brilliant minds is at our virtual fingertips.  Breast cancer?  A quick google search for "breast cancer information" yields 220 MILLION hits in two tenths of a second.

That's GREAT stuff but seriously???  How can anyone be expected to sort through that much information?  How much of it is pertinent to my needs?  Is it outdated?  Is it some crazy blogger with a mushy brain who can't get out of her own way?  Is it some researcher at, oh, I don't know, Duke University trying to sell me on some skewed information based upon observations of women treated over twenty years ago?  FYI, in medical years..... telling us about what happened 20 years ago in medicine is akin to deciphering the etchings of a caveman.  Just sayin'

Step aside, Dr. Google:  Enter Medivizor. 

I was intrigued and I decided to take it for a test run.  Or two.  This is a streamlined website that is clean, uncluttered and easy to use.  In less than three minutes, I set up a user name associated with my email account.  Then, I answered a few questions about my present health condition and how I got here.

I was diagnosed with invasive lobular breast cancer in 2006.  I had a bilateral radical mastectomy with reconstruction.  I did chemotherapy and I am presently on hormone therapy.  I am currently NED.  My chemotherapy drugs were cytoxan, methotrexate and fluorouracil.  My hormone therapy is femara.  I don't take anything else.  Except an occasional anxiety medication when, for example, someone tells me that breast cancer treatment is not evidence based, it's "consensus based" or when a medical journal screams that lumpectomy saves lives.  (It's the bit of Sicilian blood infused into my veins from my mom... can't help it..... I'll let it go now....)

Obviously, I'm not altogether too concerned with HIPAA having just outed my medical history in this very public space.  The point .... Medivizor has MY unique health information.  Except they don't know it's ME.  They ARE concerned with HIPAA and my privacy (a lesson I might want to learn one day?).  They only know my user name and the email address I gave them. What happens next?  I receive notifications.  THEY troll through the 220 million hits and THEY find the items that are recent and relevant to MY life.  It's a personal relationship.

Medivizor and me.

An email notification that there are articles that I may find pertinent directs me to my page where I can read the article. No splashy headlines.  Just facts.  Medical facts.  From real medical journals.  I can highlight sections that I find to be of particular interest, make notes on what looks like a post-it and let them know if the article was helpful, or not..... and this is just the beginning.

The site is brand new.  There are plans to include matches to clinical trials.  Clinical trials save lives.  They advance research.  Part of how I came to this point in my life is because of my involvement with Love/Avon Army of Women.  A quick glance at clinicaltrials.gov tells me there are almost 140,000 trials in every state and in 182 countries.  I'm anxious to see the clinical trials function rolled out.  Research matters.  As an advocate, I like to see what in the pipeline.  As a patient with a semi-fried brain, I'd love to see some solution oriented trials nudge my brain back to something just a bit more organized.

I'm impressed.  And they've barely scratched the surface.  I can see endless possibilities.  I've signed up as an "early adopter" and I hope you will consider joining me.  This is not just for the breast cancer crowd.  As of today, in addition to breast cancer, the invitation is also extended to those dealing with prostate cancer, colorectal cancer or diabetes. Melanoma is right around the corner.

I see my friend, Jean Campbell at No Boobs About It is as delighted as I am with her experience on the Medivizor site.  You can read what she has to say, you should read what she has to say.  And then, I would say, just do it.....

Click the link and request an invitation.  Sit back, relax and watch the information begin to flow.  No worries about inundation of information or inbox overflow.  They got this.  It's measured and controlled and for me, this has a Wow Factor on a scale of one to ten?  An eleven.  Easily.  Eleven.

And did I mention?  I'm impressed.

Note to mom:  Medivizor has your back, too.  I said I took it out for a test run or two.  I decided to challenge them with two diagnoses.  Stellar.  Positively stellar.


20 comments:

  1. Love this and am going to try it out now. As always, your post made me laugh with all its feistiness!

    ReplyDelete
    Replies
    1. Thanks, Nancy.... I think it's pretty damn awesome. I love that I got to read the actual PDF from the medical journal beside the synopsis provided by whomever is doing the work of compiling this stuff.

      I hope you like it and I hope you will share if you do!!!

      HUGS...

      AM

      ps-You SHOULD have seen what went on last night on twitter. I will probably have to blog about it..... I NEVER get my feathers ruffled in a conversation. I'm damn respectful. But this was OVER THE TOP!!!

      Delete
  2. QUICKIE correction.... hiring an editor if anyone is interested....

    I had a MODIFIED radical mastectomy...... They don't do that real radical stuff anymore..... I knew I had to correct this last night but chemobrain got in the way.....

    ReplyDelete
  3. I thought I was one of your "talk you off the ledge" buddies!!! Okay ... anyway, thanks for yet ANOTHER site to keep me up past my bedtime (-- as though Eric Brinker coming out of the closet wasn't enough, lol!) Dr. Attai will not be happy with this at all! ; ) ; ) And yes, I think we need to review some internet privacy! xoxo

    ReplyDelete
    Replies
    1. BA...
      You ARE one of my talk of the ledge buddies.... I think this episode happened before we knew each other. In fact, I'm sure of it. Well.. maybe.... it was before I began blogging (I think...)

      Anyway... this site will NOT keep you up. It will enable you to go to sleep because they do all of the searching so you aren't looking at old stuff. It's way different. Not social media. Just your own "search assistant" ....

      xoxox

      Delete
  4. I noticed that you wrote radical mastectomy but thought... she must mean modified radical... LOL! (I was an editor in a former life.) Anyway, thanks so much for the head's up about this site. Looking forward to trying it! xoxo

    PS I am not on twitter but enjoy reading the report with everyone's comments. But I can never remember where to find it. Is there a specific place to go to find this? (I am such a non twitter person! I just don't get it!)...tks!

    ReplyDelete
    Replies
    1. Renn,

      1-You Are Hired.

      2-I hope you do try the site... and I hope you like it enough to share it on your blog, too.

      3-I think you are talking about that Monday night tweet chat? If so... here's the link: not clickable but you can copy and paste!
      http://hashtags.symplur.com/healthcare-hashtag-transcript.php?hashtag=BCSM&fdate=01-28-2013&shour=18&smin=00&tdate=01-28-2013&thour=19&tmin=15&ssec=00&tsec=00&img=1

      Sheesh.. that's longer than I expected!

      Thanks, Renn...

      And thanks for sticking with me from the beginning!!

      xoxox

      Delete
  5. Thank you for this, AnneMarie! I've signed up and I really, really like it thus far. This is fantastic! I had largely given up searching for info on my own and just read material recommended by people on FB or on Twitter.

    ReplyDelete
    Replies
    1. Scorchy...

      Thank you for sharing your thoughts here because I just shamelessly dropped your name on twitter. If it has the Sarcastic Boob seal of approval (I leave it to you to come up with the snark for that....) then many more will head to the site.

      Hugs and love...

      Delete
  6. Ha, ha, ha. Instead of just adding "breast cancer," I thought I'd be extremely thorough and use the entry for "her2-receptor positive breast cancer." I got back nothin'. So I changed it, and indeed, the simple "breast cancer" entry covers it all (and then some), and the information began to flow.

    I'm very impressed by the setup. The current information is not particularly useful to me because I'm done (for now, anyway) except for tamoxifen and a clinical trial with metformin, but there's always something new to learn, and I love the way Medivizor puts it all together. (I hope everyone understands that they're in beta, so the more helpful input they receive, the better the site will become.)

    Great link, AnnMarie. Hope you're well. Good thoughts for your mom every single day. (And remember that I'm not far if you need anything.)

    ReplyDelete
    Replies
    1. Thanks, Rhonda...

      And yes, you are 100% correct... our input is essential to the success and the quality of the information that flows back. I have had some communication with the team, mostly because I wanted to set up a profile for my mom.

      I can see the difference between those of us beyond active treatment and those who are still in treatment.

      You make a great point, too and it's one definitely worth noting. It's not about quantity... it's about the quality of the information.

      Because I made adjustments to my own profile, I have messages on some of the information I was sent. They are noted by Medivizor as no longer relevant based upon the changes in medical information (but they don't remove them from the feed). The person working that part of the site it gonna give that IBM Watson a run for his money.

      Did you put that you were on Metformin in the drugs you are taking section???? I think there was just info in the news about that..... I'm remembering something mentioned in the tweet chat... maybe it's the link I pasted with Renn's comment??

      And thank you for reminding me I can reach out, too.

      xoxox

      Delete
    2. Hi Rhonda,

      This is Ronen from the Medivizor Team.

      First, I need to admit, that we are grateful and excited here in Medivizor and truly hope that our service can be of value.

      I read your comment above and wanted you to know that you should 'challenge' Medivizor. Do not hesitate to answer as much questions as you can. The system might not find a match on the spot but it might be that within days, the system will find a relevant item and send you an email about it.

      And yes, we do want feedback (good or bad).

      If you have any comments, questions, concerns or simply want to add another email address to your contact list - I am here at ronen@medivizor.com.

      regards,
      Ronen.

      Delete
    3. Thanks, Ronen.

      I started an email full of thanks and suggestions yesterday, and--par for the course--I stoppped in the middle. As soon as I finish, it will be in your mailbox.

      I'm going to post a little note about Medivizor at my HER2 support group, so be prepared for a flood.

      No bad feedback, but as I mentioned above, that "HER2-receptor positive" entry is not useful, so you might want to remove it, especially given that the "breast cancer" already entry covers HER2+.

      I love Medivizor. Thanks to you for providing it, and again, thanks to AM for devoting a post to it.

      Rhonda

      Delete
    4. Oh, and when you get around to it, "chemo-induced cognitive dysfunction" or "chemobrain," would be really handy and interesting to many of us.

      Delete
  7. Thanks Rhonda :-)
    Wil indeed be waiting for the feedback.

    ReplyDelete
  8. This is great, AnneMarie - but do you know anything about the brains behind this? And what they are doing with the "data"? I always need to find out who is driving the bus.

    Jody

    ReplyDelete
    Replies
    1. Hi Jody

      Ronen (from Medivizor) here.. (I guess this makes me "the brains"...)

      I left my email adress above. Feel free to send me an email and I would answer ALL your questions. For the sake of those reading - your data is completely safe (we don't even ask you for your name...).

      Delete
  9. I unofficially inherited the Disabled Travelers blog from its previous tenant in November of 2009, starting with a little piece about a handicapped air travel controversy in For more info visit: break

    ReplyDelete