One shot genetic cures? (Wired.com)

$3.5 million for a one-time dose? Are you kidding? But then … maybe it is reasonable?

Image from wired.com

https://www.wired.com/story/the-era-of-one-shot-multi-million-dollar-genetic-cures-is-here/

Hemgenix now produces a genetic cure. For those with hemophilia B, a disease that causes spontaneous bleeding due to a DNA mutation, there is now a treatment that injects a normal gene into the patient’s body to start manufacturing a corrected protein, with a 94% rate of no longer needing Factor IX infusions. Read it. Amazing.

And yes $3.4 million is a huge cost for a one-time treatment, but that is comparable and cheaper, than a lifetime of constant infusions and bleeding episodes and complications. And the cost WILL come down. Science fiction, here we come.

Grow humans, not IT employees (PIG-let series)

What do the books Good to Great (Collins) and How to Raise an Adult (Lythcott-Haims) have to do with Informatics? Don’t you wish you knew… (UPDATE! Link to Sinek’s Infinite game 2 minute summary)

Above: Using Craiyon to illustrate mentorship in the style of Picasso. (Thank you to Dr. V’s 33 charts blog for the innovation of harnessing AI to generate images for lazy bloggers like me)

I had a chat recently with a mentee that was enlightening, I think, to both of us. This new informatics leader was stressed about having a slate of recent failures:

  • Medical assistants in clinic their clinic tend to leave their small practice after a year or 2 of working with this person
  • Newly hired clinical informaticists (supporting physicians/APPs using the EHR under this person’s direction) were talking about leaving for a different job

However, what came out after further discussion was that:

  • These MA’s left to go to nursing school, to physician-assistant school, to physical therapy school
  • These informaticists were interested in growing their careers as well
  • Those who left often drop by to leave a to-go lunch, or leave gifts

So, which is it? Is this a failure or a success?

Of course, asked in this way, on my blog, in hindsight, the answer is obvious. On the other hand, faced with such situations in a busy, overworked clinic or informatics team, high-performing individuals leaving can be felt as a personal blow. “Oh, I spent so much time growing and mentoring this person over the past year, and THEY’RE LEAVING ME. WHAT AM I DOING WRONG THAT THEY WON’T STAY?”

Sure, it would be important to debrief these folks and make sure you’re not missing an obvious pay gap, or deficiency in the job responsibilities, or needed resources, or unhappy work environment. But in this case, these were all superstar performers leaving for positions that would allow them to grow.

In Good to Great, Jim Collins talks about Level 5 leaders who are humble enough to lead from below: to promote team work and team members and succession plans, and also to put the right people on the bus. Sometimes this means finding outstanding candidates who will outgrow their job and leave.

One could choose to look the employees leaving as a failure: all that expertise is walking out the door. Or, one could choose to see it as a success: we mentored this person, grew this human into their greater potential.

A thought experiment: Wouldn’t it be a tragedy for a superstar MA to spend a decade being a superstar MA, instead going on to become a Physician Assistant? a Nurse? a Physician? Of course, some will want to stay and BE that superstar MA… and that is okay too.

In How to Raise an Adult, Julie Lythcott-Haims notes: “Our children are not hot-house orchids, instead, they are wildflowers of an unknown genus and species.” And, there is nothing we, as teachers, mentors, supervisors can do that is as important as growing them, teaching them effective teamwork, giving them confidence, and letting them spread their wings.

In The Infinite Game, Simon Sinek states, that, unlike the Finite Game, in which the goal is TO WIN versus the other guy, the Infinite Game, the goal is to STAY IN THE GAME. What better way to stay in the game than to grow your future colleagues, where-ever they may go?

CMIO’s take? In being a Mentor, I contend, your goal is NOT ONLY to serve your organization with outstanding informatics work, BUT ALSO to GROW THE HUMANS under your care. Sometimes to grow, they will leave. And what they do after, may astound you.

Digital Health Most Wired, Level 10 at UCHealth – Colorado

Congratulations and thank you to the hundreds in the IT, operations, nursing and medical leadership who helped reach this pinnacle.

The Most Wired Hospitals award has morphed over the years. The current standard is a rating by CHIME (College of Health Information Management Executives) of a level of technical and operational achievement for being Digital Health’s Most Wired, with notable success being at levels 7, 8, 9.

In the first year that CHIME hosted this award in 2019, we were one of three organizations achieving level 10. Last year, we were one of 7, and this year – 2022, we are one of 18. 

We learn from each other. Lets hope the stage gets increasingly crowded with recipients of Wired Level 10 in future years.

My Gratitude Letter (to Dr. Fred Platt), and why you should write one too

Learning to write a gratitude letter is worthy exercise, for both the writer and the recipient. There are surprises here …

In our wellness work, we learn surprising things about ourselves.

First, that expressing gratitude benefits both the giver and the recipient, in terms of mood and overall health.

Best of all, giving gratitude, unlike carefully wrapped, commercially-obtained holiday gifts, is FREE.

One particular activity worth noting, is the GRATITUDE LETTER.
Here’s how to do it.
Write a letter to someone for whom you are grateful, and tell them why.
Make an appointment to see them in person.
Read the letter out loud to them.

The research tells us that both the giver and recipient receive a months-long boost in mood from that event.

WHY DO WE NOT DO THIS ALL THE TIME?!

Reader, I did this last week. I’m here to tell you how it went. One of my mentors is Dr. Fred Platt, author of many peer-reviewed articles and books on Physician-Patient Communication: Field Guide to the Difficult Patient Interview, and the Annals of Internal Medicine’s Words that Matter series, including “Let me see if I have this right …“. In later years, he wrote poetry.

He helped me get started in academic medicine, in teaching medical students, in learning how to be an excellent communicator, in being a better doctor, a better colleague, a better human being.

Now, decades later, his health declining, I wrote him a letter, made an appointment, and drove to see him. He only had the energy for a 30-minute visit, but loved the letter enough to have his wife and I read it to him twice.

Not a dry eye in the house.

I will miss you, Dr. Platt. Thank you.


November, 2022

Dear Fred

Thank you for the chance to tell you how you’ve changed my life.

I met you at the Bayer Institute CPC Workshop: Clinician-Patient Communication to Improve Health Outcomes. You facilitated a group of 16 junior faculty in Internal Medicine in 1997, and taught me, among other things, Reflective Listening: “So, it sounds like you’re having some belly pain, and it is going down to the right side, and you think it is … gout? Do I have that right?”

I learned about Ideas, Feelings and Values, and it changed my life. I became a Bayer-certified Communications Facilitator to follow your footsteps.

You took me under your wing, you re-ignited my passion for patient care, and gently taught me tools for difficult conversations: “On the one hand you think … On the other hand I worry …”

You co-founded Foundations of Doctoring at University of Colorado. Our initial trials at teaching communication in lecture halls met with abject failure. 160 students at the first lecture, and only 5 come to the second one.

We repeatedly redesigned the course until it really sang: 1 standardized patient, 4 student learners coaching each other, and a facilitator guiding ILS: Invite, Listen, Summarize. I use and teach these tools today to incoming students.

You generously asked me to co-author numerous communications papers, published in several journals, including the series WORDS THAT MATTER in the Annals of Internal Medicine. We discussed a number of delightful cases, including the case of the patient who ate too many pies at work, and wanted to claim workman’s compensation, prompting an outburst from my resident.

For this computer-geek doctor, you taught me compassion and connection and relationship-building. These are my guiding principles to this day. In my national travels and talks that I give in the Informatics world, there are few who have had a mentor like you.

I am proud to teach your ideas that words matter, communication matters, relationships matter.

I’ve learned over the years, that I have an internal Judge voice, who sounds suspiciously like my father, and an internal Sage voice, who I call Fred.

I am so grateful for your teaching, your counsel, your collegiality, and your friendship.

Thank you, Fred.

With Love
CT Lin
Chief Medical Information Officer, UCHealth
Professor of Medicine, University of Colorado

 

Wide-Ranging Interview w This Week Health (CT Lin and Bill Russell)

Bill and I chat about Info Blocking, Anticipatory Guidance, Inbasket Redesign, a 350% increase in portal messages, a one-page pediatric medical record, and more!

I’ve made it to the big time! I enjoyed chatting with Bill about Burnout, documentation, inbasket, messaging online, and information blocking in a 15 minute chat in the hallways at CHIME 22 fall forum in San Antonio. See link above.

Science Communication Secrets (Wired.com, XKCD’s Randall Monroe on What If 2?)

Don’t think about it as if people aren’t smart. Think about it like people are busy.

From wired.com, Randall Monroe

https://www.wired.com/story/randall-munroe-is-back-to-answer-your-impossible-questions/

We scientists need to talk gooder. Randall is an excellent example of taking complex scientific ideas and making them understandable and relatable. I love his quote above:

“Don’t think of it like people aren’t smart. Think about it like people are busy.”

This is a paradigm shift for science (and all) writers: respect your audience. People know when they’re being talked down to.

This reminds me of one-page executive summaries to get your point across quickly.

CMIO’s take? Not only is Randall funny, see his http://xkcd.com comic series, but he is also insightful. Get his book, read his strip, its all good.