Free EMR Newsletter Want to receive the latest news on EMR, Meaningful Use, ARRA and Healthcare IT sent straight to your email? Join thousands of healthcare pros who subscribe to EMR and EHR for FREE!

Hard Doc’s Life – Fun Friday Video

Posted on July 31, 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.

We’ve regularly written about physician burnout and physicians’ frustration with EHR software. It’s a real issue that needs to be dealt with on so many levels. So, it seems appropriate for this Fun Friday post to share a video ZDoggMD posted from the Wisconsin Med Society where ZDoggMD pulls out a live performance of a Hard Doc’s Life. Enjoy the video below:

Tell us about your Hard Doc’s Life in the comments.

Where’s the Health IT Innovation?

Posted on July 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.

Becker’s Health IT’s Akanksha Jayanthi, has put together an article which outlines the 11 most interesting developments in health IT this year. Here’s the list:

1. Data breach overload.
2. Meaningful use forges on.
3. Epic gets vocal.
4. Telemedicine takes off.
5. The talent gap widens as a need for IT leaders emerges.
6. Mayo Clinic pick makes Epic more epic.
7. IBM ventures into health IT.
8. ICD-10 upheaval.
9. EHR-related lawsuits skyrocket.
10. Hospitals and health systems shift IT priorities.

I won’t argue about what’s missing on the list since when it’s “most interesting”, then that has a lot of personal bias. However, as I read through the list I was saddened by how few things were really interesting. In fact, most of them were big negatives (ie. breaches, meaningful use, lawsuits etc). Our industries most interesting items are government regulations and purchases?

Does it make anyone else sad to consider that this is the interesting part of our industry? Unfortunately, many of these are interesting, because they’re such a massive part of our industry. They’re so massive that we don’t get to hear the many interesting, exciting and positive things that are happening in healthcare IT.

I’d love to hear other people’s lists or things that they’d put on their most interesting health IT happenings. Where’s the healthcare IT innovation happening?

The Power of Saying “I Don’t Know”

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.

Somewhere in our culture we decided that you were incompetent if you said “I Don’t Know.” It’s unfortunate, because it’s created a society that often fakes it when they shouldn’t. That can lead to dire consequences. There’s a real power in saying “I Don’t Know” and we should embrace it. This is true for everyone, but particularly doctors. Here’s an excerpt from an article that talked about this phrase:

As physicians, we aim for perfection. We want to have all the answers. All the time. Especially standing at the front of a room full of more junior learners. But that’s not real life. Every day, we see patients that give us cause to look up something or consult a colleague. This uncertainty and life-long learning needs to be built into, and even explicitly role-modelled in teaching. Not only is it not feasible nor realistic to be prepared for every clinical teaching session, it frankly looks pretty fake when it’s attempted. Sure, every medical resident should have the management of common life threatening problems like seizures and hyperkalemia at their fingertips (which no chief resident would need to prepare in advance), but the diagnostic criteria for rare diseases can (and should) be looked-up rather than portrayed as something that people should just know.

Often, one of the most powerful teaching points that can be made during clinical teaching is to say, “I don’t know.” Not only will it make people appreciate you for your honesty; but it also permits the more junior learner to feel less anxious and less alone.

I still remember my first real job out of college. I was hired to essentially be a backup to everything that my boss did. They wanted her to be able to take a vacation and so I needed to be able to do anything that she could do (sounds a bit like what doctors are required to do when they enter the field). On one of my first days someone came in with a major problem and I had no idea how to solve it. I turned to my boss and asked her how to solve it. I was a bit stressed and worried about getting it fixed. She calmly told me, “John, I don’t know how to fix it…but we’ll figure it out.”

That one moment taught me a great lesson in life. You don’t have to know everything. It’s ok to say I don’t know and you can work to find a solution to the problem.

We should have this expectation from our doctors. They may not know the answer right off the top of their head. We should be ok with that and ok with them making sure they give us the best answer possible. I remember a doctor once telling me that the body of medical knowledge is so big that it’s impossible for the human mind to know it all. What does that mean? It means that there are plenty of cases where the doctor should say that they don’t know and we should be ok with that. It also means that we should leverage technology to help doctors find the answers to those challenging questions.

As the article states, being able to say “I Don’t Know” shouldn’t let doctors (or us in our own lives) not know how to handle common problems. We need a baseline of understanding and not knowing some things is incompetence and you can’t shield yourself from incompetence with the phrase “I Don’t Know.” If you do, that will definitely catch up to you.

It’s a powerful thing to say “I don’t know, but I’ll figure it out.”

What Are You Doing To Protect Your Organization Against Your Biggest Security Threat? People

Posted on July 28, 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.


This was a great tweet coming out of the HIM Summit that’s run by HealthPort. I agree with the comment 100%. Sure, we see lots of large HIPAA breaches that make all the news. However, I bet if we looked at the total number of breaches (as opposed to patient records breached), the top problem would likely be due to the people in an organization. Plus, they’re the breaches that are often hardest to track.

What’s the key to solving the people risk when it comes to privacy and security in your organization? I’d start with making security a priority in your organization. Many healthcare organizations I’ve seen only pay lip service to privacy and security. I call it the “just enough” approach to HIPAA compliance. The antithesis of that is a healthcare organization that’s create a culture of compliance and security.

Once you have this desire for security and privacy in your organization, you then need to promote that culture across every member of your organization. It’s not enough to put that on your chief security officer, chief privacy officer, or HIPAA compliance officer. Certainly those people should be advocating for strong security and privacy policies and procedures, but one voice can’t be a culture of compliance and security. Everyone needs to participate in making sure that healthcare data is protected. You’re only as strong as your weakest link.

One of the attendees at the session commented that she’d emailed her chief security officer about some possible security and compliance issues and the chief security officer replied with a polite request about why this HIM manager cared and that the HIM manager should just let her do her job. Obviously I’m summarizing, but this response is not a surprise. People are often protective of their job and afraid of comments that might be considered as a black mark on the work they’re doing. While understandable, this illustrates an organization that hasn’t created a culture of security and compliance across their organization.

The better response to these questions would be for the chief security officer to reply with what they’ve done and to outline ways that they could do better or the reasons that their organization doesn’t have the ability to do more. The HIM manager should be thanked for taking an interest in security and compliance as opposed to being shot down when the questions are raised. It takes everyone on board to ensure compliance and security in a healthcare organization. Burning bridges with people who take an interest in the topic is a great way to poison the culture.

Those are a few suggestions about where to start. It’s not easy work. Changing a culture never is, but it’s a worthwhile endeavor. Plus, this work is a lot better than dealing with the damaged reputation after a security breach.

Medical Tourism Infographic

Posted on July 24, 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 wonder how many healthcare organizations are thinking about medical tourism. I know there’s quite a bit of discussion about it in Las Vegas where I live. I know some practices that make a killing off of medical tourism. As you can imagine, the biggest medical tourism in Las Vegas is around your appearance (plastics, bariatrics, spas, etc). Vegas happens to be a great thing for all of those with some of the leading experts. It doesn’t hurt that it has cheap flights from everywhere and great hotels to stay in while you recover.

The medical tourism topic is unique to each locale. However, what does apply everywhere is that patients are seeking out the best and cheapest care they can find. That often includes travel out of state or out of country.

With this in mind, I was intrigued by this Medical Tourism Infographic put together by PreTaxHealth. It offers some interesting insights into the medical tourism industry.
Medical Tourism and the Cost of Healthcare Technology

Are We Short Sighted in Ambulatory?

Posted on July 21, 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 was recently having a conversation with Susan Clark from eHealthcare Consulting and we were talking about the ambulatory world and what makes it unique. I commented to her that many in ambulatory are just trying to survive and so they want the simplest, cheapest solution possible. She then commented that many of them make very short sighted decisions.

I thought the comment was fascinating since I’ve seen this happen over and over again in the ambulatory world. There are some exceptions, but for the most part I’ve seen many in the ambulatory environment want the quick, dirty, easy solution as opposed to making a long term decision that will pay long term benefits.

Since I live in the EHR world, that’s where I’ve seen it most. In fact, I think it’s why we’re heading into the next generation of EHR switching. Many doctors chose the cheap and easy way out with their EHR (which wasn’t always that cheap) and now they’re paying the price as they have to switch EHR vendors.

The sad part is that many of them actually spent a lot more on their EHR thinking that it was a great long term investment when in fact the great long term investment would have been to spend more time evaluating, planning, and implementing the right EHR in the right way. Instead they just threw money at the most expensive EHR with the idea that if it costs more it must be better. Sadly, many of the high end EHR brands haven’t lived up to their high end price tag. In fact, many doctors would have been much happier to go with the less expensive mid-tier EHR vendor that worked better with their practice and their workflow.

This brings up a key point in an ambulatory practices decision making. Long term decision making doesn’t mean that you always have to pay more money for something up front. However, it almost always means you have to spend more time and energy up front evaluating the decision. That extra time and energy has a cost, but it pays big dividends long term. However, I think Susan Clark’s right that there’s far too many ambulatory practices who are short sighted and don’t want to make that kind of investment.

Crazy ICD-10 Codes? Let’s Put Them In Perspective

Posted on July 16, 2015 I Written By

The following is a guest blog post by Jennifer Della’Zanna, medical writer and online instructor for Education2Go.
Jen HIM Trainer
Exhibit A: W55.21XA Bitten by a cow, initial encounter

Exhibit B: Y92.241 Hurt at the library

Exhibit C: Y93.D1 Accident while knitting or crocheting

Exhibit D: W56.22 Struck by Orca, initial encounter

These are the kinds of codes trotted out to “prove” how ridiculous moving the ICD-10 coding system is. What do we need these codes for? Everybody seems to be asking this question, from congressmen to physician bloggers to—now—regular people who have never before even known what a medical code was.

Here are a few things you should know about these codes. Some of you actually should know this already, but I’ll review for those who have been sucked into the maelstrom of ridicule swirling about the new code set.

  1. You’ll notice that all those crazy code examples start with the letters V, W, X and Y. These are all “external cause codes,” found in just one of ICD-10’s 21 chapters (Chapter 20). In my version of the manual, that encompasses 76 pages. Out of 848.

    External cause codes are the only ones ever trotted out as ridiculous. Do the math. They make up 9% of the codes. They are used mainly to encode inciting factors and other details about trauma/accident situations. There are some other uses, but not many. Do most people use them in everyday coding? No. That’s not going to change with the new system. If you’re a coder who is not already using external cause coding on a day to day basis, you will likely not have to start now. Most people never look in this chapter—ever.

  2. The reason there are such funny codes is the system allows you to “build” a code using pieces, which is what makes the book so easily expandable in all the right places (which is the point of the entire code change—the external cause codes just came along for the ride). Let’s look at Exhibit A: Bitten by a cow, initial encounter:
    The first three characters of the code indicate the category. Each additional character adds some detail.W55 is the category “Contact with other mammals”The 4th character 2 indicates contact specifically a cow (although included in this code is also a bull). You can change the animal to a cat by using 0 or a horse by using 1. You get the idea, right?

    The 5th character 1 indicates that the injury is a bite. A 2 would mean the patient was struck, not bitten.

    The 6th character X is a placeholder because this code requires a 7th character extension to indicate what encounter this visit was.

    The 7th character A indicates that this was an initial encounter. You could change this to a D if the patient has returned for subsequent visits or an S if the patient ends up with another problem later that could be attributed to this original cow—or bull—bite.

  3. We can code most of those same ridiculous codes with ICD-9, although most times not quite to the same specificity. I’ll match the ones below to the exhibits we have at the top:
    Exhibit A: E906.3 Bite of other animal except arthropod

    This is what we would currently have to use for “bitten by a cow.” There is no way in the current code set to indicate whether this is an initial encounter or a follow-up encounter for this accident, however. Since the code is so vague, this code could actually also be used to mean “bitten by a platypus” or “bitten by a pink fairy armadillo,” so yes, you can still code that in ICD-9, but not as well.

    Exhibit B: E849.6 Accidents occurring in public building

    Do you consider a library a public building? I do. Yep, you can code that with ICD-9, but not as well.

    Exhibit C: E012.0 Activities involving knitting and crocheting

    This is what we call a one-to-one mapping. A specific code for this already exists in ICD-9 with exactly the same description. Next.

    Exhibit D: E906.8 Other specified injury caused by animal

    This is the code we would have to use to indicate an attack by an Orca. Again, no indication of what encounter it is, but this time there is actually no reason to even use this code because, really, what information is it giving you? The patient was injured by an animal. We have no idea what kind of injury or what animal caused it. I’m all for going to a useful code for those rare occurrences of attacks by Orcas (which, as we all know, do occur from time to time!).

The real point is not what kinds of crazy things are now able to be coded, it’s what critical things can be coded with ICD-10 that could not be coded with ICD-9. The most newsworthy one is Ebola. In ICD-9, we have to use 065.8 Other specified arthropod-borne hemorrhagic fever. In ICD-10, we have A98.4 Ebola virus disease. But there are other reasons to go to the new system. There are new concepts in ICD-10 that didn’t exist in ICD-9, like laterality. We now have the ability to indicate which side of the body an injury or other condition occurs. This inclusion is one of the biggest reasons for the book’s code expansion. Each limb and digit has its own code (but, again, it’s the changing of one number in the overall code that indicates left or right, and which digit is affected). With all the complaints about the increased documentation required for the new code set, one would hope that most physicians already document which hand or arm or leg or ear or eye or finger is affected. As I mentioned above with the seventh-character extension, there is the ability to indicate the encounter and, more importantly, to link a prior condition with a current one with the use of the S character that indicates “sequela.”

There’s much evidence that the ICD-10-CM will help make patient records more accurate and reporting of conditions more precise. This will lead to improved research abilities and a healthier worldwide population. And the ridiculing of ICD-10 codes, which I’m sure will continue long after this blog post has disappeared from your newsfeed? Well, they always say that laughter is the best medicine!

About Jennifer Della’Zanna
Jennifer Della’Zanna, MFA, CHDS, CPC, CGSC, CEHRS has worked in the allied health care industry for 20 years. Currently, she writes and edits courses and study guides on medical coding and the use of technology in health care, as well as feature articles for online and print publications.  You can find her at www.facebook.com/HIMTrainer and on Twitter @HIMTrainer.

Can We Now Officially Say that ICD-10 Is Going to Happen?

Posted on July 15, 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.

With the announcement that came a little over a week ago about CMS and AMA working together on ICD-10, does that mean that we can officially say that ICD-10 is going to happen? The ICD-10 Watch blog has a good summary of what CMS committed to do in the announcement:

  • CMS is creating an ICD-10 Ombudsman to deal with healthcare providers’ ICD-10 problems. More on how this will work later.
  • Without using the words “safe harbor” or “grace period,” CMS promises that Medicare will not deny any medical claims “based solely on the specificity of the ICD-10 diagnosis code as long as the physician/practitioner used a valid code from the right family.”
  • Quality reporting programs such as Physician Quality Reporting System (PQRS), Value Based Modifier (VBM), or Meaningful Use 2 (MU) will suspend penalties that may result because of lack of specificity.
  • There will be advance payments available if the Medicare system has problems.

The second and fourth items have gotten all the buzz. Most have interpreted that the second one means that CMS won’t deny ICD-10 claims that weren’t done correctly. That’s an overstatement, but it does decrease the number of denied claims that will occur with the switch to ICD-10. The fourth item listed above was a major concern that I raised, but it applied to all payers and not just CMS. So, it’s nice that CMS has addressed the cash flow challenges that slow claims processing of ICD-10 claims will cause, but that still leaves all the other payers.

With the “peace treaty” signed between AMA and CMS, can we finally say that ICD-10 will not be delayed again? One person suggested to me that it just leaves the AHA as a possible opponent that could stop it. However, I also heard it suggested that they weren’t looking for a delay.

While usually avoiding trying to predict the unpredictable Washington, I’m going to say that we can safely assume that ICD-10 will not be delayed again. We might see an overture or two still that tries to delay it, but if I were putting my money down in Vegas I’d put it all on No ICD-10 Delay in 2015. Are you putting your organization’s “bet” in the same place?

I Have Seen The Portal, And It Is Handy

Posted on July 14, 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.

After writing about EMRs/EHRs and portals for many years, I’ve finally begun using an enterprise-class portal to guide my own care. Here’s some of my impressions as an “inside” (EMR researcher) and “outside” (not employed as a provider) user of this tool. My conclusion is that it’s pretty handy, though it’s still rather difficult to leverage what I’ve learned despite being relatively sophisticated.

First, some background. I get most of my care from northern Virginia-based Inova Health System, including inpatient, primary care, imaging and specialist care. Inova has invested in a honking Epic installation which links the majority of these sites together (though I’ve been informed that its imaging facilities still aren’t hooked up to core medical record. D’oh!) After my last visit with an Inova doctor, I decided to register and use its Epic portal.

Epic’s MyChart has a robust, seemingly quite secure process for registering and accessing information, requiring the use of a long alphanumeric code along with unique personal data to establish an account. When I had trouble reading the code and couldn’t register, telephone-based tech support solved the problem quickly.  (Getting nearsighted as I move from middle- to old-aged!)

Using MyChart, I found it easy to access lab results, my drug list and an overview of health issues. In a plus for both me and the health system, it also includes access to a more organized record of charges and balances due than I’ve been able to put together in many years.

When I looked into extracting and sharing the records, I found myself connected to Lucy, an Epic PHR module. In case you’ve never heard of it (I hadn’t) here’s Epic’s description:

Lucy is a PHR that is not connected to any facility’s electronic medical record system. It stays with patients wherever they receive care and allows them to organize their medical information in one place that is readily accessible. Patients can enter health data directly into Lucy, pull in MyChart data or upload standards-compliant Continuity of Care Documents from other facilities.

As great as the possibility of integrating outside records sounds, that’s where I ran into my first snag. When I attempted to hook up with the portal for DC-based Sibley Memorial Hospital — a Johns Hopkins facility — and integrate the records from its Epic system into the Inova’s Lucy PHR, I was unable to do so since I hadn’t connected within 48 hours of a recent discharge. When I tried to remedy the situation, an employee from the hospital’s Health Information Management department gave me an unhelpful kiss-off, telling me that there was no way to issue a second security code. I was told she had to speak to her office manager; I told her access to my medical record was not up for a vote, and irritated, terminated the call.

Another snag came when I tried to respond to information I’d found in my chart summary. When I noted that one of my tests fell outside the standard range provided by the lab, I called the medical group to ask why I’d been told all tests were normal. After a long wait, I was put on the line with a physician who knew nothing about my case and promptly brushed off my concerns. I appreciate that the group found somebody to talk to me, but if I wasn’t a persistent lady, I’d be reluctant to speak up in the future given this level of disinterest.

All told, using the portal is a big step up from my previous experiences interacting with my providers, and I know it will be empowering for someone like myself. That being said, it seems clear that even in this day and age, even a sophisticated integrated health system isn’t geared to respond to the questions patients may have about their data.

For one thing, even if the Lucy portal delivers as promised, it’s clear that integrating data from varied institutions isn’t a task for the faint of heart. HIM departments still seem to house many staffers who are trained to be clerks, not supporters of digital health. That will have to change.

Also, hospitals and medical practices must train employees to enthusiastically, cheerfully support patients who want to leverage their health record data. They may also want to create a central call center, staffed by clinicians, to engage with patients who are raising questions related to their health data. Otherwise, it seems unlikely that they’ll bother to use it.

Adapting Hospital Records to the Needs of Transgender People

Posted on July 13, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://radar.oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

More than just about any other institution, hospitals and clinics have to deal with the unexpected. People with the most unusual characteristics and problems drop in all the time. But electronic records, being formal documentation, like regularity. The clash between diversity and computerization explodes into view when a transgender or gender-queer person walks in.

I have written about the strains that transgender people put on an EHR earlier as part of my family’s encounter with the medical system. Recently I got a chance to talk with a leader who has taken some of the necessary steps to fix systems: Scott MacDonald, MD, working in the health system of University of California at Davis.

A thrust to improve UC Davis’s handling of LGBT clients preceded Dr. MacDonald’s arrival. A group of staff and clinicians interested in providing better care to LGBT people decided to take steps to address the needs in that area. The institution made an ethical commitment to reducing disparities in care. The group recognized that the information in the record was deficient–they often didn’t even know who identified as LGBT.

The first step in this information gathering is training health providers to ask for the information in ways that are sensitive to patients’ feelings, and to become comfortable with it. The next step is deciding what to do with that information, and the third is figuring out how to store it in a structured way.

As MacDonald says, “The first priority is to train providers to understand why this data collection is important, explaining that they cannot care for a person whose life situation they don’t understand. Research (especially for reducing disparities) is a close second priority. An electronic means to capture the data needs to be created along with these efforts. Once the data is available in a formal, structured way, we can encourage and train clinicians to ask the pertinent questions and respond to the information sensitively.”

When MacDonald joined the organization, he brought technical expertise with working on disparities in ethnicity and language. He started two surveys: one of the patient population and another of the staff.

The patient survey showed that for the most part, patients were glad to be asked about their sexual orientation (which is different from sexual behavior, although related). They were particularly open to the question if their primary care provider was the one holding the discussion. Naturally, some expressed privacy concerns and wondered who might have access to the information once it was recorded.

Health care providers also showed a willingness to learn more about LGBT issues and be listed in the UC Davis registry as an LGBT-welcoming provider. Over time, without an explicit mandate from leadership, the information collected on the sexual preference of patients increased. UC Davis also provided resources for training in LGBT issues via a web site.

Before starting, UC Davis interviewed the clients of a local clinic specializing in gender issues, in order to flesh out their understanding of patient needs and sensitivities.

Now we get to the heart of the IT issues. Any record system used by a health care institution needs at least the following to handle transgender and gender non-conforming patients:

  • A way to list their preferred name and gender, along with the name and gender that appear on their insurance cards and other official documents. Transitions can take years, and patients often have insurance with the old name and gender long after they have made the determination to be known in a new way. Gender can also be a fluid and evolving concept for some patients.

  • Ways to record the factors that affect gender, such as what surgeries they have had for gender dysphoria and what hormones they are taking. Someone who identifies as male may still need to have a regular Pap smear. A male-to-female transgender person may have a very different normal range on a blood test from someone born female (cis-female).

UC Davis had licensed an Epic EHR, but at that time Epic had only a few suggestions to offer. For instance, they suggested adding a special flag for transgender patients, but this would be too limited a way of handling the range of gender issues encountered, and would not provide adequate clinical information. UC Davis thus launched into a series of customizations, which Epic in turn compiled into an implementation guide that has been used by other customers.

The goal at UC Davis was to make it easy for patients to enter data at in the privacy of their homes through Epic’s patient portal. The interviews at the partner clinic had showed that many were comfortable providing information this way that many were comfortable providing information this way. Besides asking for assigned sex at birth, click-buttons in the portal’s web page offer common choices for current gender identity and sexual orientation. The patient could also enter free-text comments if the predefined choices didn’t capture their identity.

The same information could be entered by clinicians as well. People viewing the record could not tell whether the gender information was entered by a clinician or directly by the patient (although on the back-end, the system preserves the provenance of the information). MacDonald said that the source of the information was ultimately the patient, so it doesn’t really matter who entered it.

What’s important is that the gender-related information, formerly stuffed into free-form text somewhere in the record, was now stored in a structured format. This allows UC Davis to fulfill its mandate to track how it is addressing disparities in care. In the future, such information may also feed into clinical decision support tools.

The gender information is not displayed prominently, but is available to all staff who have access to patient records and seek it our for purposes of patientcare. It is protected by the usual information security measures in place at UC Davis. The information is of greatest use to the primary care provider, but is also used by in-patient nurses and special departments dealing with transgender issues.

The patient’s preferred name was easier to handle. Epic already allows records to distinguish between the official name–used for legal and insurance purposes–and the preferred name. The record offers several descriptors that explain what the preferred name is, such as a nickname or alias. To this list of descriptors, UC Davis added an option applicable to transgender patients.

The remaining missing information is the status of a patient during and after transition. A record can’t yet record birth sex in a separate field from gender identity. It can capture sex as cis-male or trans-man, but that doesn’t gracefully account for the combinatorics of birth sex, gender identity, legal sex, and so on. Transition-specific surgeries and hormone therapy can be captured as a part of surgical history and the medication list, but there is no standard way to record organ inventory. Those things are still listed in free-form text.

However, Epic is looking at ways to adapt its software at the deep level to show this diversity of status. This is something all vendors need to do, because more and more people of all ages are identifying as transgender or non-conformaing as the public gets used to the idea that this kind of identity is within the range of normal. The needs of the population are complex and urgent, so the faster we fix the records, the better will be the care we provide.