Informatics in the Round

Phenotyping: What Makes You Not Average?

Our second episode of this year is fascinating.  What do phenotypes, COVID, Cancer, Spiderman, and Jurassic Park have in common?  Well, we talk about almost all of this in the episode, but I bring up Spiderman now, and the Peter Parker principle (With great power comes great responsibility....)
We welcome back Shannon Rich (@richones1), a regular on this show and a constant boost of energy and cynicism.  Jane Bach (@janebach) also returns for this episode, with a great song that hints at the subtext of our conversation.  
Wei QI Wei, PhD (@weiweiqi) is a national expert in phenotyping— the science of using analytics and natural language processing to uniquely identify subgroups of people in a medical record system who have specific defining characteristics. 
Jane was kind enough to send me a fabulous recording of "I Am One" written by Jane Bach, Sandra Piller, Jeanie McQuinn. Vocals by Briana Tyson. Copyright Piller Sounds Music Publishing (ASCAP), Great Big River Music (BMI).  Check out that lyric video here:  https://www.youtube.com/watch?v=IyKN0Gk2-3M
Kevin

COVID and the Hidden Data Gap

Season 2 is here!  Our first episode of this year should have the theme, meeting guests where they are.  We welcome back Sarah Bland who is a regular on the podcast, for which I’m very thankful. Sarah is a leading project manager in our biomedical informatics department, and is extremely knowledgeable about informatics and precision medicine, very funny, but who also has life experiences very relevant to this episode that she shares.
Alissa Abeler and Hannah Smith are a wonderful team. In their professional life they are the singer/songwriter duo called The Daily Fare. Check out their brand of Indie Americana music in this episode and on their website
https://www.thedailyfaremusic.com or on Facebook.  They also have had "quite the year" and take this episode in a critical direction. Thank you!
Dr. Colin Walsh is a national expert in predictive analytics (AI, machine learning) focusing on mental health and behavioral disorders. Colin is a physician who cares deeply about wellness issues.
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So, what data do we need to manage life after COVID? That was the initial focus of the episode.  But one of the themes of the conversation is what are the questions people need to be asking today so that we can capture the information they need us in healthcare to know?
Speaking of questions, I need to hear from you about topics you want us to cover. I’m on Twitter @KBJVanderbilt, and you can also leave me comments on my Facebook site for informatics in the round, or on this site. 

The Journey: Acknowledging our Path in our Profession

We conclude the 2020 year with an episode that straddles informatics education and social issues.  Oliver Bear Don’t Walk is a PhD candidate doing informatics research in the  Columbia University Department of Biomedical Informatics. He’s joined by Suzanne B. Bakken, Ph.D., RN, FAAN, FACMI, one of the world’s most prominent figures in informatics, and Professor of Biomedical Informatics at Columbia University. In addition to her international acclaim as a nursing informaticist, Suzanne currently serves as Editor-in-Chief for JAMIA--arguably the premier journal in biomedical informatics. 
This episode features a sensitive and often private topic, and we all had a chance to bear our souls (present speaker included.)  I would summarize our discussion as being focused on one two-word phrase. Academic code-switching.   If you’ve never heard of code-switching, it's the process of “fitting in” by borrowing a phenotype, or a way of appearing, that hides your true identity.   We hear about it a lot in the corporate workplace, where women have to act like male counterparts, or even in communities, where phrases like “man up”  or “uncle Tom” reflect an inability to code-switch.  This may not sound like informatics, but let me assure you, it impacts the field in very insidious ways that we hear from all three of the speakers at different times.
We also have the honor of being joined by Nolan Neal (https://nolanneal.com/) who is a phenomenal artist, with a very distinctive musical presence.   I met Nolan here in town at the Hotel Indigo with two of my dear friends after a concert. His performance in the hotel lounge was the best performance of the night!  We since chatted, and I discovered how much his story reminds us all of how much our journeys NEED to be reflected in our work.  Nolan ends the episode by playing a new song, called "The Man I Used to Be." It's a journey song if ever I've heard one, and it's powerful but also an anthem for all who are aware of straying from their path and trying to get back on it.  Thanks, my friend.
Please hear about his journey on youtube at https://www.youtube.com/watch?v=6WHNFIqh6V8
Of course, he has music out there and more on the way, so feel free to visit his website and enjoy!

Trust, Information and Metadata

This episode includes a number of people who’ve become regulars of late:
Shannon Rich is funny, irreverent, but also at times seriously frustrated, and all that comes out in the hour plus of this discussion.
Jane Bach, one of the world’s well-known songwriters, returns and also has a lot to say.
Dax Westerman, an incredibly thoughtful and articulate software engineer at  Vanderbilt, and the man responsible for the name of this podcast, joins us. This was a topic of interest to him, and I have to agree that it was a great idea!
 Nicholas  (Nick) Lemann, the Joseph Pulitzer II and Edith Pulitzer Moore Professor of Journalism and Dean Emeritus of Columbia University. In addition to his work as an academician at Columbia University, Nick is a staff writer for the New Yorker, a five-time book author, a member of the New York Institute for the Humanities, and a fellow of the American Academy of Arts and Sciences. 
Nick was the perfect person to lead the discussion we had on this episode.
If I could summarize this entire podcast in one word, it would be metadata.  Specifically, we discuss metadata in the real world, and how we who live in this world should learn to interpret data.  These hidden data tell us a bit about what to trust, versus what may be opinion. And we learn that sometimes different generations have outdated beliefs about the source of objective data!
 It’s a bit of a heady episode, but boy did I enjoy listening to it again. I hope you find it educational.  You’ll hear a few major themes—like trust versus opinion, objective versus subjective, and knowing what to do to stay safe during the pandemic.
Please listen to this one in its entirety. It’s meant for all of us to hear and digest, and it could help you get through this pandemic.

Data Privacy:Possible, Impossible, or Somewhere In Between?

I’m Dr. Kevin Johnson, physician and informatics chair at Vanderbilt. @kbjvanderbilt on Twitter.
This episode covers the most requested topic we have had so far.  We have two of the world’s experts on the topic of data privacy on the show today: Dr. Ellen Wright Clayton and Dr. Brad Malin. They were incredibly generous with their time and had a lot of information to share with a very inquisitive and engaged group on this podcast.  Brad and Ellen are a dynamic duo in the world of genomic privacy and have literally been thinking about this topic their entire careers. There is NOTHING we could ask them that they couldn’t answer.  Thank you guys. You were honest, articulate, and wise. As always.
 
Our other guests included an amazing singer/songwriter duo:   Allisa Abeler and Hanna Smith, also know as The Daily Fare.  They were gracious enough to let us add their most recent HIT song (That’s what I’m predicting for them!) to this episode but even more impressive, they had a lot of stories and opinions to share about data privacy.  As songwriters, who tend to express emotions through their art, I wasn’t sure how they’d feel about the leaking of private information. You’ll enjoy hearing their thoughts about this topic, I’m sure!   You can hear their music at www.thedailyfaremusic.com/home.
 
The intro to this episode featured a former coworker and patient at VUMC, Bernadette Ruby, a Senior Learning Experience Designer and fantastic photographer from Vanderbilt.  She has a very complicated medical history and is one of those people with a diagnosis so rare that everyone in medicine wants to learn from her. That comes at a price, as you’ll hear.
Finally, I was lucky to get Sarah Bland back on this episode.   She was a FIRECRACKER, but then when isn’t she. Sarah, you rock, and you help us keep the conversation real.  Thank you for coming on.
What did we cover, you ask? Deidentification, anonymization, HIPAA (not a female Hippo!) Genomics, genetics, privacy, ethics, law, crime, Minority Report, little white lies that some agencies can tell us…..yup, pretty much everything about this topic in some form.

Deploying Software: A View from the Trenches

This episode focuses on the challenge of software deployment from the perspective of two completely different industries that share more in common than we realized. 
 
Oh, and of course, because this is Informatics IN THE ROUND, we get into music. But not into country music, AT ALL.  We discover a connection between music and the environment that may surprise you!
 
We had 5 guests in this episode. 
 
Dr. Rob Turer is an emergency medicine physician who is in the middle of his clinical informatics fellowship at Vanderbilt.
 
Dr. Dara Mize is an assistant professor of Medicine in the Division of Diabetes, Endocrinology and Metabolism, and Biomedical Informatics.  Dara is an adult endocrinologist and focuses on diabetes and thyroid disease.  She also is a Clinical Director of Health IT at Vanderbilt.  Her work interests focus on efforts to improve the clinician experience with the EHR and to support change which enhances clinicians’ ability to provide excellent patient care. 
Together, the two of them have been working recently on the topic of this podcast, which is deploying enterprise-wide software throughout an organization.
 
Silas "Big Silas" Dean is a self-described ‘serial entrepreneur’ well known to people in the Tennessee region.  His most recent and highly successful venture is a company called VendEngine that builds and deploys cloud-based software for the Corrections industry.
 
Bernard Salandy is a 30 year veteran of the Corrections field. He’s been a Certified Correctional Health Professional and a Certified Jail Manager.  He started his career as a correction officer for the New York City Department of Corrections. He’s had a number of high-level jobs in the field, including Deputy Chief of the Rutherford County Detention Center. He is now retired from that role and is VP of Business Development for Vend Engine.
 
Silas "Young Silas" Dean is a songwriter/artist in Nashville, among other things!  Young Silas, like a lot of musicians in Nashville and elsewhere, has a side gig that it turns out is relevant to today’s topic. The entrepreneurial spirit is contagious in that family!

Informatics and Anti-Black Racism: What We Need to Do

This episode focuses on the issues surrounding George Floyd and anti-black racism, and what we in informatics can do to combat this issue that's finally been thrust into the light where enough Americans can see it that they are calling for action.  (Thank you, America. Better late than never.)
Special thanks to our guests!  Dr. Arie Nettles is Professor of Pediatrics, and the Director, Office of Inclusion and Health Equity, Vanderbilt University Medical Center. 
Dr. Nancy Lorenzi  is Professor of Biomedical Informatics, and Clinical Professor of Nursing at Vanderbilt University. She is also Vice President for Strategic Change Management at Vanderbilt University Medical Center.  She is a world expert on organizational dynamics and how to change structures and processes. 
Dr. Yaa Kumah Krystal is an Assistant Professor of Biomedical Informatics and Pediatrics. Yaa is a thoughtful, articulate and experienced black woman, who is wildly creative and offers a lot of insights during this conversation.
Philip Adejumo is a soon-to-be medical student at Yale, where he will be pursuing an MD and PhD at the same time. Oh, and he’s a swimmer and has qualified for the summer Olympics. 
Dr. Patty Brennan is one of the most visible and most influential biomedical informatics experts in the world. The WORLD!  She’s director of the National Library of Medicine, and in that role, as well as in her previous roles in academia, she has been a fierce proponent of personalized care, health equity, and the importance of social and behavioral determinants of health in developing socio-technical systems.  
We covered some very visceral and at times, frustrating topics.  I don’t want to give ANYTHING away on this one, folks. It’s worth the ride.  The one thing I will say is that it’s not just about the usual topics of bias in data, more papers about how to help subpopulations in our community become resilient. Not that these aren’t important, but we went somewhere much deeper, much more generalizable, and way beyond just what we in informatics can do.  I for one, have some very clear marching orders based on this podcast.   
Listen to this one twice—once where you listen to podcasts, and once at a place where you keep your to-do list. You CAN and will make a difference if you heed even one piece of advice from this episode.
 

Inside the World of Precision Medicine: Delivering Care that Works the First Time

This episode we talk about one of the hottest areas of research in the field of informatics: Precision Medicine.  Precision medicine is the culmination of years of work collecting health care data about every individual and putting it into a computable form in an electronic health record.  The holy grail of informatics was the idea that we could reuse these data to make sure that information unique to you was used to make diagnoses, prescribe medicines, and even tell you about your disease risks.  
Josh Denny, MD, MS is a physician and fellow informaticist who has been a world leader in this movement for over 15 years. It’s a pleasure to have him on the podcast.  Josh has played a major role in the creation of  The AllofUs initiative at the National Institutes of Health. This is a big precision medicine initiative with the goal of collecting data for at least 1 million people in a secure and private way, but also in a way that supports researchers around the world who are doing precision medicine research. In fact, Josh is now CEO of the AllofUs Program, which, when you hear him talk about this topic, will come as no surprise to you. He’s low key, affable, funny, and really smart!
We also welcome Brian Carlson, MHSA, who is Vice President for Patient Experience at Vanderbilt University Medical Center, and an expert in patient-facing technologies. He knows his way around information technology and informatics as well, as you’ll soon discover. 
 
Last but NEVER least, it was a pleasure to have Rischelle Jenkins sit in. Rischelle is the Graduate Program Manager in Biomedical Informatics.  Rischelle offered a practical perspective about precision medicine and helped us to break down this complex topic into much more understandable chunks.
We didn’t have a songwriter for this episode,  unfortunately, but we have the next best thing:  a songwriter AFTER this episode. I asked a friend who you heard sing on our inaugural episode. Rhett McDaniel is a quintessential Nashville in the Round songwriter with some really powerful songs like the one you're about to hear.  When he told me about this song, I realized it fit the conversation we had in this episode about precision medicine very well.  The song is called "The Dash"  co-written and sung in part by Adam James Deiboldt.
I asked Rhett how he came up with this song, and this is what he told me:
It was on a sign in front of a church. The song is tricky because it takes on some pretty big existential ideas. The song is about a man who is packing up the last things from the house where he grew up and is reminded how his parents lived a good life, full of love. And that things like letters and photos are kinds of artifacts we leave behind. The character in the song has a moment of realization that he was able to learn more about them by seeing these things packed away for years that revealed new insights into their lives before he was born. He then realizes that life is full of little “births and deaths” and that waking in through front for and then out the back to leave is one as well. What’s important is all the stuff that happened between the times he did that. This is about his time growing up and then moving out. Also, his parents’ time in the house and, even this day he came in, learned new things about his parents and remembered his life inside there...and closed the door behind him, ending this chapter and starting a new one.
Please take a listen to this amazing song and let http://www.rhettmcdaniel.com/  know you love it!
Please check me out on twitter @KBJVanderbilt, and on facebook, @Informatics in the Round.  If you like this podcast, please subscribe on podbean or your favorite podcast platform!