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International Women’s Day – Women in HIT Wish List

Posted on March 8, 2017 I Written By

Healthcare as a Human Right. Physician Suicide Loss Survivor. Janae writes about Artificial Intelligence, Virtual Reality, Data Analytics, Engagement and Investing in Healthcare. twitter: @coherencemed

Inequality in healthcare IT can get discouraging. Simplistic articles and advice for organizations on support from other women isn’t helping decrease the wage gap. (According to the 2016 report from HIMSS.) This year while attending HIMSS I asked women what advice they had for other women in Health IT.  I wanted to write life changing advice about what women in healthcare can learn from knowing women in tech and from each other.  I wanted to convince my good friend that left Health IT to move to other parts of Tech to come back. Many activists encouraging documenting your experiences negative and positive within the healthcare IT system. Some of the things I could share I judged too damaging for my personal goals to write about. As I spoke with Sarah Lacy and Cindy Gallop they directly said- if no one shares their story nothing will change.

Women’s issues in technology and the workplace make me livid. Here’s a list of some of them.

  1. Being casually hit on by married men in a professional setting. Or lack of professionalism. I’ve heard shocking stories from doctors and CEOs. Recent legal action has highlighted some systemic sexism in technology companies.
  2. Women who discredit each other in public and in private.
  3. At one meeting a woman mentioned “It must be hard to be in a room with so much estrogen.”
  4. Being afraid of mentioning anything for fear of losing credibility or hurting people I value.
  5. Feeling unsupported by men when I have greater fallout from relationships than they ever will. Do not forget that some of the fear is actually founded. Women who speak up do not always have support at work.
  6. Balancing positive and negative experiences can be exhausting. I am a mother like Sarah Lacy- I loved her comment that becoming a mother changed everything.  While I want to be a good example and provide for my three children I haven’t had the moment when I call out sexism and inequality in my personal experience.

Double standards scare me. In chatting with Sarah Lacy about being unafraid of sharing I was impressed by her candor about real personal losses.  Her comment that standing up for women has made her enemies reminded me that gender parity isn’t free.  It takes fearlessness. Through losing someone to suicide a year and a half ago I saw some fallout of people and realized that not everyone is for us. People disappeared that I never expected to leave my life and not everyone knew how to interact with me anymore. The advice I give to people from that experience is- When you don’t fit into the same mold you will lose people. Not everyone will want to work with you. Take people where they are. Always be where you are. Let go of some people so your professional life has room for true allies. For my friend that meant leaving Healthcare tech for another software industry. For me it meant a higher paying job after John’s death and only working with people I chose to connect with. It was a huge financial adjustment for personal reasons. I was also one of 4 women with a team of approximately 70 men at the time. In a very real way the women at that company had different expectations than the men. For one woman I spoke to at HIMSS it has meant losing her job at 55 and experiencing wage discrimination despite extensive experience. Have the courage to be where you are.

Systemically the culture of women in technology has to change. The loss of potential innovation and revenue and talent is a major cost to companies and the industry. There are educators teaching the economics of gender equality and trying to balance the equation. Thank you.

I have an amazing group of women in my life. I’ve had the honor to be part of Doyenne Connections this year. They are a group of women dedicated to grassroots support and mentoring. I was able to attend the Women in Tech Luncheon hosted by Disruptive Women in Healthcare.   I’m still pretty sure that Ceci Connolly and I are going to lunch next year.  I sat next to Dr. Wen Dombrowski at the luncheon and she reminded me to make my own opportunities.

Statistics about women in healthcare IT are discouraging. The wage gap is alive and well in healthcare especially at the executive level. Some of the theories about why this might be true seem apologist to me. HIMSS Vice President Loren Pettit was quoted in regards to the for profit gender pay divide shortly before HIMSS. “To be perfectly honest, we can’t explain that,” he said. “It’s just how the data came out.”


Expletive?  There is probably an informatics specialist out there that has a digital solution to this problem. Can we gamify equality for corporations? This year has seen some new initiatives encouraging women to be involved in technology, including Melinda Gates announcing she was planning to invest in programs.  The 2017 report about Gender Barriers from reported that “a lack of female mentors (48 percent), a  lack of female role models (42 percent) and limited networking opportunities (27 percent) are the top three” barriers to women advancing in technology.   I went to some great women’s networking events at HIMSS. Can we make women specific events free? Many women’s events at HIMSS have an additional registration and cost. Companies that asked about helping women – I’ll give you an idea about what you can do. Sponsor a women’s event.

As Cindy Gallop reminded me- “If nobody speaks up, nothing changes.”

Here’s my wish list for Women’s Day this year.

  1. I want the gender gap in Health IT to get narrower this year.
  2. I would love to see support of female counterparts for gender differences without fanfare or expectations. Show up for women. Show up because it is what people do.
  3. I would love a health IT solution for gender parity in tech. If it already exists, please contact me so I can write about it.
  4. I wish we could all be as brave as female leaders that aren’t afraid of making enemies.  I wish I could be as brave as they are.
  5. I would love to see Melinda Gates as a mentor. My mentor.  Actually as my sponsor.

This Women’s Day I don’t have an inspirational article about moving proudly forward. I am tired. Some of the people I thought would be on my side as a woman are not. That’s not where they are. There are some safe places but it is exhausting. I’m not fearlessly calling out wrongdoing to raise awareness. I’m not sure what the complete solution is. We are all stumbling forward through darkness. We will make a way. We will make our opportunities.

Post Script- Can we never clap for men asking how they can help again?  I sort of expect men to show up. It’s a financial problem for Healthcare that women don’t stay here. The first time I saw the clapping was my first HIMSS when a man asked how men can help and everyone clapped and I didn’t know what was happening. This was clearly not like other feminist groups I know. I looked around and thought- maybe start by not making a women’s event about you. Also have you heard of a thing called Google – you can insert questions and will get some relevant data. You could type “what can I do to encourage women in tech” into the search bar. Spoiler alert – money is the answer. You can pay women the same amount you pay men. Your company will also be more profitable.


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 ( 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.