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Parkinson’s Disease and Health Data: A Personal Story

Posted on March 5, 2015 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

For 20 years, I’ve been writing about clinical data management, analytics and what has now come to be known as Big Data. Like everyone else who follows this sector, I’ve been exposed to many examples of brilliant thinking about leveraging health data, and of late, a growing number of examples where data analytics has improved care and saved lives.

I’ve also reported on dozens of notable case studies in which combing EMRs for telltale signs of disease has resulted in finding dangerous or even life-threatening conditions, including heart disease, diabetes and to a more limited degree cancer. What’s even more remarkable is that we’re likely to see the list of conditions detectable by data analytics expand greatly, particularly if we make smart use of the growing flood of mobile health data.

The problem is, we’re still extremely far from achieving universal health data interoperability, and no amount of inspiring speeches by HIT thought leaders or Congressional bellyachers will achieve this goal on their own. We need a shift comparable to cultural transformation that fueled the astonishing progress of our space efforts. (Maybe someone should claim that the Russians are ahead of us in the interoperability race — we can’t let them Russkys achieve national health data interoperability before we do, durn it!)

And none of this will help me get the last few years of my life back.

You see, while the diagnosis hasn’t been all-out finalized, it appears that I have a case of early-onset Parkinson’s Disease. I won’t bore any clinicians with a detailed description of the illness, but suffice it to say that it’s neurological in origin, potentially disabling and at present, uncurable and unstoppable.  I can probably still live a good life, particularly if I respond well to standard drugs, but all told, this thing is a major buzz kill.

I’ve had signs and symptoms that fit the diagnosis for at least a couple of years, and I dutifully reported them to the caregivers I saw. That included several encounters with doctors associated with the large, high-quality health system which serves the region where I live.  The health system providers entered the symptoms into their jet-fueled Epic EMR, but it seems that despite that, they never put two and two together.  (And as is still the norm, the data gathered at PCP visits has been in no way connected to the data living in the hospital Epic system.)

Fortunately, picking up on the earlier signs of Parkinson’s — if that is indeed my condition — wouldn’t have done anything to slow the progression of the illness. (If I had a malignant cancer, of course, this would be a different story.)  But heaven knows I would have had the clarity I needed to make good self-care choices.

For example, I could have seen physical therapists to help with growing muscle weakness, occupational therapists to help me adjust my work style, joined patient groups to gather support and volunteered for clinical trials. (I live in the DC metro, not too far from NIH, so that may well have been an option.) And most importantly, as I see it, I wouldn’t have had to live with the vague but growing dread that something was Just Not Right for years.

Because I’m not a clinician, I’ll never know how likely it is that I could have been diagnosed earlier if all my caregivers had all of my health data.  But I’m confident that interoperability and the accumulation of population data will help with earlier diagnosis and treatment of many unpleasant, disabling or even fatal conditions.

So when you go about the business  of improving data analytics tools and interoperability, mining population health databases for trends and leveraging mHealth to improve chronic disease management, I invite you to think of me — not a tragic figure by any means, but someone who’s counting on you to keep connecting the dots.  Never doubt that the human value of what you do is extraordinary, but never forget that real people are waiting in the wings for you to supply insights that can give them their life back.

Teddy Roosevelt and Gerald Ford Quotes

Posted on February 16, 2015 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I thought it would be fun to look at some quotes from Presidents on President’s day that might inspire you. I hope you enjoy the following quotes.
Teddy Roosevelt - EMR and EHR

Gerald Ford - EMR and EHR

2014 EMR and EHR Stats Report

Posted on January 20, 2015 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I’m a little late in posting the stats for this blog, but I thought I’d do it now for posterity’s sake. I previously posted a stats report on EMR and HIPAA and will be doing it on other Healthcare Scene blogs including this one. I think it will tell an interesting story about the progression of the Healthcare Scene blog network over time.

So, without further ado, here are some interesting stats I got from a report on EMR and EHR for 2014.

In 2014, we published 273 new posts on EMR and EHR, growing the total archive of this blog to 1,411 posts.

EMR and EHR was viewed about 720,000 times in 2014. The busiest day of the year was February 28th with 1,484 views.

I’m proud that all but one of the top posts are from 2014. I know Carl spent a lot of time creating #2, so I’m glad that it’s been seen by so many people.
1. 4 Things Your Patient Portal Should Include
2. EHR Product Market Shares Rankings: The Envelope Please!
3. Why ICD-10?
4. Rise of the Digital Patient Infographic
5. Improving the EHR Interface and Topol Saves Patient’s Life on Flight Home

The question that Kyle posed in #3 – Why ICD-10? – is a battle that’s still raging. We’ll see if ICD-10 goes forward and that question goes away or whether it’s delayed again and the battle will rage on. #4 and #5 show the power of a great infographic and Topol saving someone’s life.

EMR and EHR has had visitors from 168 countries in all, but the US is far and away the top readership. Thanks to the 785 views that came from Italy (sorry, I have an Italy bias addiction in case you didn’t know).

I hope you enjoyed the stats and thanks for reading! Here’s to a wonderful 2015!

Merry Christmas!

Posted on December 25, 2014 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I hope everyone’s enjoying their Christmas. Here’s a look into mine (with 2 of my beautiful children). Merry Christmas!

wpid-20141225_193231.jpg

Happy Thanksgiving – Family Health History Day Infographic

Posted on November 27, 2014 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Did you know that today is Family Health History Day? I didn’t either, but this infographic spells it out. I hope everyone’s having a lovely Thanksgiving! I have to get back to football my family.

Family Health History Day Infographic

Happy Labor Day!

Posted on September 1, 2014 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Here in the US, today is Labor Day. I’ve got plans to spend the day at a waterpark with the family. I can’t wait since I’ve grown addicted to the water park this summer. As I think about why, I realize that a waterpark is a great mix of thrills and relaxation. You can go catch a waterslide and have some fun and get your heart going or you can go hang out in the lazy river or wave pool shallow area. It describes me really well. I love thrill and excitement, but I also love to just chill and hang out in my own thoughts or with good friends.

That’s my fun plans for today. What’s yours?

Also, I can never celebrate a holiday these days without thinking about all the amazing people in medicine who are working today. My hospital friend recently texted me “The hospital is always open. It’s one of the great and terrible things about working in a hospital.” She’s right. My thanks goes out to all those people who make a sacrifice on these holidays. Your labors are certainly appreciated my millions.

1300 Blog Posts and 3.5+ Million Pageviews

Posted on August 4, 2014 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I need to try and remember to celebrate each blogs accomplishments more often. I just noticed that EMR and EHR just passed 1300 blog posts and 3.5 million pageviews since we started this blog on April 30, 2009 (Note: The full Healthcare Scene network is well over 6000 blog posts). I just came across this tweet and it seemed fitting to describe what I’ve done with EMR and EHR.

I guess one could argue that the Ark was built with help from THE EXPERT, but let’s not get dig into Bible doctrine here. No doubt this is the ark. People ask me all the time if I have a background in journalism. Short Answer: No. Long Answer: I was the guy that avoided any kind of English class in college and so I only took one business writing class my whole college career. After that they also ask me if I have a background in healthcare. Short Answer: No. Long Answer: I interviewed for my first job in healthcare about 9 years ago and when asked about my experience in healthcare I replied, “I’ve been to the doctor.” For those wondering, I do have an IT background. That’s why I’m appropriately @techguy on Twitter.

Why then has EMR and EHR been such a success? I’ll admit that my timing was good. The $36 billion in EHR stimulus money really helped this site grow. Although, this site wouldn’t have the thousands of email subscribers and regular readers that it has if there wasn’t something more.

At the end of the day, I think there are two major things that have made EMR and EHR a success: passion and community.

I love healthcare IT. More specifically, I love the impact of technology on systems. I love how you can use technology to improve something (yes, I know we could argue whether EHR improves something or not, but that’s another post). I have a deeply held belief that technology can improve processes. Luckily that belief is deeply rooted and proved out in millions of ways. Sadly, only a few of those are in healthcare, but to me that just means there’s so much opportunity. This passion is what makes 1300 blog posts possible. Any blogger can tell you that about 50 blog posts in, the low hanging fruit is gone. Passion is what gets you past 50 blog posts and why there’s a never ending well of content that can be written.

While passion is important (especially at the beginning when no one is reading), the real reason EMR and EHR is a success is because of the community behind it. The regular readers who comment publicly and privately make it something special. The readers who forward a post to their colleagues and friends are all apart of the makeup of the blog. The people who tweet and share these posts on social media are what make this blog tick. Thanks to all of you who contribute in some small or large way to the community.

Thanks for letting me muse for a minute about EMR and EHR. I’m looking forward to the next 1300 blog posts and 3.5 million pageviews. I think we’re entering one of the most exciting times for healthcare IT. I see a bunch of grunt work ahead, but the results of that grind are going to provide solutions we would never expect.

Staying Safe (and Healthy) During #GeorgiaSnow

Posted on January 29, 2014 I Written By

As Social Marketing Director at Billian, Jennifer Dennard is responsible for the continuing development and implementation of the company's social media strategies for Billian's HealthDATA and Porter Research. She is a regular contributor to a number of healthcare blogs and currently manages social marketing channels for the Health IT Leadership Summit and Technology Association of Georgia’s Health Society. You can find her on Twitter @JennDennard.

You may have heard about the #Snowmadgeddon taking place in the South this week. As a resident of Georgia who commutes into Atlanta, I can safely say our fair city is in no way prepared to handle driving in such weather. We’re just not cut out for it. I tend to think in Twitter terms, so I’ll call it an #AtlantaFail. But, I must point out that situations like this, thankfully, bring out the best in most people. I saw many good Samaritans attempting to help stranded motorists during the four and a half hours it took me to get from the office park I was visiting to the closest friend’s house I could find. The friend, a fellow #HITchick, graciously opened her home to me and a friend I made at the networking event I attended earlier in the day.

snowtweet

How does this tie into healthcare? I want to say a big thank you on behalf of patients everywhere to the ambulance drivers and EMTs that attempted to drive through the icy conditions last night to help those in need. I saw several ambulances on our drive last night, and heard many more sirens. Like the new friend I made, there were many folks in Atlanta that assumed they’d be traveling to their home states at the end of the workday. For those out-of-state residents that had health incidents during the #Snowpocalypse (another popular euphemism that has popped up on Twitter), I sincerely hope that digital tools helped their caregivers treat them more quickly and more effectively.

I also want to say a huge thank you to the school staff, teachers and bus drivers who did their best to help ensure Georgia’s school children remained safe and warm, even though it meant spending the night at school for some.  As a room mom, my next move will be showering our teachers with gratitude. As has become so evident over the last few years, healthcare starts at home and in our communities, and it definitely does my heart good to think that our kids were being taken care of while many of us were stuck in cold cars on treacherous roads.

I’ll be back on track with healthcare IT-specific topics next week. Stay safe and warm out there, folks!

Off Subject: Black Friday

Posted on November 29, 2013 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

What’s your thoughts of Black Friday? Yes, this post has nothing to do with EMR and EHR, but you should be on vacation and spending time with family. Plus, if you’re at work you could probably use a diversion as well. So, let’s talk about Black Friday.

I ironically posted a Healthcare IT Black Friday post over on EMR and HIPAA today. I’ll be interested to see how many people like the idea of giving the gift of e-learning this holiday season. Nothing like giving the gift of learning. Although, I’m sure many would love chocolate as well. Of course, no reason you can’t do both.

How do you approach Black Friday? Do you brave the stores and find great deals? Are you like me and think that most of the black friday deals aren’t all that big of a deal?

As someone who doesn’t mind crowds, I don’t mind the crowded shopping. In fact, I kind of relish in a packed mall, full of people hustling and bustling around during the holiday season. My wife on the other hand hates it. However, I don’t see any need to get out and do all my shopping on Black Friday.

I don’t see shopping for gifts as a chore, but as a fun time to find something that will brightens someone’s day. I definitely don’t go overboard on gift giving. I try to be thoughtful and provide something of meaning and value to the people who receive my gifts. If I can’t find something that reaches those goals, I usually don’t give a gift.

Since I can’t resist comparison, I think this is a little like healthcare IT. Too often we try to force something that doesn’t make sense. That almost always leads to a failed or defunct project. This doesn’t mean we shouldn’t be creative. This doesn’t mean we shouldn’t push the envelope. This doesn’t mean we shouldn’t create change in our organizations. In fact, I’d argue that it will take extra creativity, pushing the envelope, and change to do what we know we should be doing in healthcare IT.

Either way, I guess you could call this my day off from blogging. I’d love to hear your thoughts. Regardless, I hope you’re having a great holiday weekend.

Fourth of July

Posted on July 4, 2013 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

As usual, I’ve created a Fourth of July post on EMR and HIPAA. Otherwise we’ll be taking the day off. I think you’ll enjoy that post.

Happy Fourth of July to everyone!