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Healthcare Data Standards Tweetstorm from Arien Malec

Posted on May 20, 2016 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.

If you don’t follow Arien Malec on Twitter, you should. He’s got strong opinions and an inside perspective on the real challenges associated with healthcare data interoperability.

As proof, check out the following Healthcare Standards tweetstorm he posted (removed from the tweet for easy reading):

1/ Reminder: #MU & CEHRT include standards for terminology, content, security & transport. Covers eRx, lab, Transitions of Care.

2/ If you think we “don’t have interop” b/c no standards name, wrong.

3/ Standards could be ineffective, may be wrong, may not be implemented in practice, or other elts. missing

4/ But these are *different* problems from “gov’t didn’t name standards” & fixes are different too.

5/ e.g., “providers don’t want 60p CCDA documents” – data should be structured & incorporated.

6/ #actually both (structured data w/terminology & incorporate) are required by MU/certification.

7/ “but they don’t work” — OK, why? & what’s the fix?

8/ “Government should have invested in making the standards better”

9/ #actually did. NLM invested in terminology. @ONC_HealthIT invested in CCDA & LRU projects w/ @HL7, etc.

10/ “government shouldn’t have named standards unless they were known to work” — would have led to 0 named

11/ None of this is to say we don’t have silos, impediments to #interoperability, etc.

12/ but you can’t fix the problem unless you understand it first.

13/ & “gov’t didn’t name standards” isn’t the problem.

14/ So describe the problems, let’s work on fixing them, & abandon magical thinking & 🦄. The End.

Here was my immediate response to the tweetstorm:

I agree with much of what Arien says about their being standards and the government named the standards. That isn’t the reason that exchange of health information isn’t happening. As he says in his 3rd tweet above, the standards might not be effective, they may be implemented poorly, the standards might be missing elements, etc etc etc. However, you can’t say there wasn’t a standard and that the government didn’t choose a standard.

Can we just all be honest with ourselves and admit that many people in healthcare don’t want health data to be shared? If they did, we’d have solved this problem.

The good news is that there are some signs that this is changing. However, changing someone from not wanting to share data is a hard thing and usually happens in steps. You don’t just over night have a company or individual change their culture to one of open data sharing.

The Real HIPAA Blog Series on Health IT Buzz

Posted on April 8, 2016 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.

If you’re not familiar with the Health IT Buzz blog, it’s the Health IT blog that’s done by ONC (Office of the National Coordinator). I always love to see the government organizations blogging. No doubt they’re careful about what they post on their blog, but it still provides some great insights into ONC’s perspective on health IT and where they might take future regulations and government rules.

A great example of this is the Real HIPAA series of blog posts that they posted back in February. Yes, I realize I’m behind, but I’ll blame it on HIMSS.

Here’s an overview of the series:

It’s a common misconception that the Health Insurance Portability and Accountability Act (HIPAA) makes it difficult, if not impossible, to move electronic health data when and where it is needed for patient care and health. This blog series and accompanying fact sheets aim to correct this misunderstanding so that health information is available when and where it is needed.

The blog series dives into the weeds a bit and so it won’t likely be read by the average doctor or nurse. However, it’s a great resource for HIPAA privacy officers, CIOs, CSOs, and others interested in healthcare interoperability. I can already see these blog posts being past around management teams as they discuss what data they’re allowed to share, with whom, and when.

What’s clear in the series is that ONC wants to communicate that HIPAA is meant to enable health data sharing and not discourage it. We all know people who have used HIPAA to stop sharing. We’ll see if we start seeing more people use it as a reason to share it with the right people at the right time and the right place.

Connected Care and Patient Experience Survey Results

Posted on September 30, 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.

Surescripts recently put out the results of a survey they did on Connected Care and the Patient Experience. If you’re like me, whenever you see a survey, you want to see the questions and raw data from the survey. The good news is that Surescripts has shared the survey result data here.

We could dig into a lot of the data, but this chart was the one that really stood out to me:
Patient Engagemnt and Healthcare Information

No doubt Surescripts has a bit of bias when it comes to wanting to get organizations to share healthcare data. They started with sharing prescription data, but they’re working on sharing much more data. This Surescripts bias aside, aren’t we all biased towards wanting the right information to be shared in the right place at the right time? That’s the nirvana of healthcare data that all of us as patients want.

Put another way, can I please fill out a health history form one time and never have to fill one out again?

This is a feeling that resonates with so many patients. It’s felt particularly strong when you fill out essentially the same paperwork possibly on the same day for 2 specialists that both work for the same company. Brutal to even consider, but it’s the reality of healthcare data sharing today.

I understand many of the reasons why this isn’t happening and it is a very complex problem with no easy solutions. There are a lot of organizations and people involved and many of them aren’t motivated to change. Change is hard when you’re motivated. Change is almost impossible when you’re not motivated.

Back to the graphic above, I love how it frames the issue. The challenge of poor information is bad on multiple levels including: slowing down the patient visit and improper care. The graphic above illustrates so well how much better we can do at getting the right information to the doctor. Doing so will make a doctor more efficient and help them provide better care.

Sharing Medical Records Cartoon

Posted on September 18, 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.

It’s Friday! Time for a little healthcare IT humor courtesy of The New Yorker:

Sometimes reality has to make you laugh even if it’s a sad situation. Or as Health IT Policy wonk Steven Posnack said:

How Do We Balance Improved Outcomes with Protecting Personal Information?

Posted on July 29, 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.

There’s an interesting article by the Pacific Standard (never heard of them before now) about the “hidden market” of medical data that exists. The final paragraph provides a great summary of the challenges we face when it comes to health data:

There is no perfect way to balance the competing priorities of using big data for improved health outcomes and protecting our personal information. Opinions on which interests should come first will differ—and should. But the debate cannot be open, honest, or effective if major companies like Walgreens or Safeway are secretive about what they do. People are often generous when it comes to volunteering personal data for the purpose of advancing medicine. They are less so when it comes to enriching sellers of information. Either way, the proper course of action is disclosure. Simply put, if our medical data is being bought and sold, we deserve to know it—and have a say. Perhaps making our data available to others is as helpful to medicine as IMS claims. But shouldn’t that be up to us?

That’s the best summary of balancing improved outcomes and personal information that I’ve ever read. We all want better outcomes and I think that most of us believe that the right healthcare data will get us to better outcomes. We also all want our data to be protected from people who will use it inappropriately. The balance between the two competing priorities will never be perfect.

The reality is that there’s going to be more and more healthcare data available about all of us. Much of that data is going to be shared with a large number of organizations. Most people are just fine with that sharing assuming they believe the sharing will help them receive better care. However, there does need to be some mechanism of transparency and disclosure about when and how data is used. That doesn’t happen today, but it should happen.

The challenge is that pandora’s already out of the box. The data is already flowing a lot of places and putting in accountability now will be a real challenge. Not that I’m against challenging things, but we’re kidding ourselves if we think that accountability and transparency around where and when are data is shared is going to be easy to accomplish. First, companies are going to be dragged kicking and screaming to make it happen. Some because they know they’re doing some things that are at least in the grey area and some are totally shady. Others aren’t doing anything inappropriate, but they realize the costs to implement transparency and accountability for the health data they share is going to be very high. A high cost project that doesn’t add any more revenue is a hard business proposition.

While I’m not hopeful that we’ll see a widespread transparency about what health data’s being shared where, I do think that some forward thinking healthcare companies could push this agenda forward. It will likely happen with some of the companies who have avoided the grey and shady areas of health data sharing that want to create a competitive advantage over their competitors and build trust with their users. Then, some others will follow along.

What do you think that could be done to make health data sharing that’s happening today more transparent?