I am a KP member. I am a trans woman. I am a designer. How can I help?

2017.01.26 KP Lantern Presentation_
2017.01.26 KP Lantern Presentation_ (View on Flickr.com)

Yesterday was the coming out, as it could be called, for the KP Lantern project, which you can read more about in this blog. The photo above is from a presentation given to the Innovation Learning Network (@HealthcareILN) about KP Lantern.

The field work, designed to understand the health and life experience of people who are transgender, was performed last year as a quality improvement project, which has strict requirements around dissemination of findings. In addition, work like this typically would not include the members/patients/people being served, and usually not in an equal team-member type capacity. This doesn’t mean this is how it should be, it is how it is.

And now it is is changing, due to work like KP Lantern. In the slide above, Chris McCarthy (@McCarthyChris) described how he was approached by a design professional in San Francisco, gainfully employed herself, who offered to be a part of the team. The opportunity was accepted, and marked the first time in the Innovation Consultancy’s history that a member was hired to be a part of the team. The other first was that a community member, living in the trans community, was brought onto the sponsors group for the project. (see: Innovation often happens in out of the way places)

One of the things that our designer brought to us was this empathy exercise, which I am republishing below. Go through it for yourself or with others. It will help you understand more about gender and what you can do to make the world a more healthy place for all humans.

  1. What is your gender identity?
  2. How and when did you first know your gender identity?
  3. Is it possible that your gender identity is a phase that you will grow out of?
  4. Is it possible that your gender identity developed from psychological trauma, poor parenting, or media exposure?
  5. Are your family and community aware of your gender identity? How do they feel about it?
  6. How do you communicate your gender identity to other people? Has anyone ever been confused about it?
  7. Has anyone ever asked you to “tone down” your gender expression?
  8. How would you feel if you had a child who was transgender?
  9. Has anyone ever questioned your fitness to be a parent based on your gender identity?
  10. Have you ever been denied services because of your gender identity or expression?
  11. Have you ever considered surgery to “correct” a part of your body?
  12. How do you feel about the parts of your body, personality and circumstances that best confirm your gender identity? How do you feel about the parts that don’t?

As usual comments welcome, and the reminder that our generation of physicians came to health care to change everything, love always won, and life is great in the decade of the patient 🙂 .

“I will not stop until we have the right to see our own information” – Part 2 -2015

This is the scene in which I encountered @ReginaHolliday yesterday

Regina Holliday Paint In 55551
Regina Holliday Paint In 55551 (View on Flickr.com)
That’s her with others, in front of the imposing low-rise brutalistic structure of the Hubert H Humphrey Building which is the headquarters of the United States Department of Health and Human Services (@HHSgov).

This is the scene in which I encountered Regina on July 13, 2010, the day Meaningful Use regulations were announced:

(from this blog post: “I will not stop until we have the right to see our own information” | Ted Eytan, MD)

Then, Regina stood next to Kathleen Sibelius as she unveiled Meaningful Use to the world.

The difference in images is striking – from filling the scene to being just a small part of it.

Brutalist architecture is so fascinating to me. It was considered beautiful for its time (see: Continuing my Sustainability Tour: Royal College of Physicians, London – A Brutalist Modern Masterpiece | Ted Eytan, MD), and yet … it feels like something is missing.

I looked up the history of the Humphrey building, and I found that it was the second government building commissioned during President Kennedy’s call for “the finest contemporary American thought.” Indeed, from the 1962 Guiding Principles for Federal Architecture:

The policy shall be to provide requisite and adequate facilities in an architectural style and form which is distinguished and which will reflect the dignity, enterprise, vigor, and stability of the American National Government. Major emphasis should be placed on the choice of designs that embody the finest contemporary American architectural thought. Specific attention should be paid to the possibilities of incorporating into such designs qualities which reflect the regional architectural traditions of that part of the Nation in which buildings are located. _Where appropriate, fine art should be incorporated in the designs, with emphasis on the work of living American artists._ (emphasis added by me)

Interestingly, the policy doesn’t say anything about buildings being human scale or connected to the community, other than they should be “accessible to the handicapped.”

About the plaza with which Regina and others were standing, architect Marcel Breuer said:

This gives us a sizeable plaza opposite the Mall where we least need one. Nor can it be landscaped because trees won’t grow over the freeway tunnel. Bereur’s solution is to turn it into a kind of urban landscape with granite paved depressions and pyramids to give it some interest and perhaps – I am keeping my fingers crossed – delight. – By Wolf, V. E. (1972, May 13). Breuer’s new HEW: Fine designs, dollar signs. The Washington Post, Times Herald (1959-1973)

I’m not sure if people would characterize the plaza today as a place of delight, you be the judge!

Regina was visited by folks including Mark Scrimshire (@ekivemark), Lana Moriarty (@Lmoriarty1), and Erin Siminerio (@epoetter), so it’s not as if there is a lack of communication. However, it feels like there’s a lack of accessibility. The building architecture doesn’t help.

In other wackiness in the 1970s, by the way, plans for a gym in the building were scrapped as executives were told they “would be expected to get their exercise by running upstairs and chasing welfare fathers.” (HEW drops plan for gym, to stay trim chasing welfare cheaters. (1973, Aug 31). The Sun (1837-1989))

Now of course, we realize that lack of active design in a building causes the people in them to live shorter lives and be less innovative in solving problems at their root cause….

In terms of what this is about, Regina Holliday wrote a blog post about it Regina Holliday’s Medical Advocacy Blog: Let Freedom Ring.

My opinion is that this is less about a number in a regulation than it is about an interest in being accessible to the people we serve. There are so many different ways to do that. For example, you can measure response time to messages – a health professional that doesn’t respond to a patient query in less than a business day on average, is not accessible. Easily measured and tracked across providers. Other measure is access to physician progress notes and lab results – if a high percentage of patients are accessing their test results online (in the 40-50% range) it’s easy to understand that there are structural factors in place making this happen. Again, easily measured and comparable across providers and sites.

I’m convinced after almost 50 million patient-years of experience connecting with patients online at Kaiser Permanente that doctors and nurses want to do this. What health professional wakes up hoping to not be there for the people they take care of? What they need is a system that enables and prioritizes this type of care – patients want them to have this too. We’re all in agreement, no groupthink involved 🙂 .

As with so many things, this is about communication, not technology. As my profile says, I am glass 3/4 full, and I am not a huge fan of seeing patients on the outside of the health care system.

At least on this day, the Humphrey building emphasized the work of living American artists. I think President Kennedy would be proud.

More photos from yesterday below (click to enlarge), and one additional one, where this all started. Comments always welcomed.

73 cents the first day 6-23-09

What member / patient engagement looks like #iRetreatKP

When people ask me to talk to them about “patient engagement,” I admit, what’s going through my head is, “I think you’re asking me to tell you how to listen to people?” I don’t believe “engagement” is “rephrasing things so patients do what we tell them” or “telling patients what we’re working on so they can lower their expectations.”

Thanks to Barry Gutierrez Photography, I can tell a lot of my colleagues agree with me. These are the photos from the session I mentioned previously: (#iRetreatKP – My favorite things are Member Voice and Mentorship | Ted Eytan, MD) Look at them and how they are not sitting at the table rounds – some are sitting on the stage itself, as four articulate people we serve, from GenY to Baby Boomer, tell us how much they want us to be the best we can for them.

So it’s not just the patients who are engaged in this room at the Kaiser Permanente Innovation Retreat :).

Thank you again, Farooq, Mackenzie, Regina, Brian, and my colleagues who stood to listen and learn.

#iRetreatKP – My favorite things are Member Voice and Mentorship

Voices of Members For our Health (view on Flickr.com)

I just got back from this year’s Kaiser Permanente Innovation Retreat (#iRetreatKP) and am so delighted that I had the opportunity to do the two things I enjoy the most with so many people I enjoy the most: Bring the member/patient voice into the conversation, and mentorship.

I stress the word “opportunity” because the retreat is not my event (it is hosted by our Chief Information Officer, Phil Fasano – @fasanophil ), and I collaborated with a lot of people, most notably:

The members

We have over 9,000,000 of them, and Farooq Qureshi, Mackenzie, Regina Holliday (@ReginaHolliday), and Brian Swart, are four examples of how exceptional each one is. In reality, they do all the work, achieving their life goals supported by optimal health. What we are doing is respecting their contribution.

We did a few innovative things on this special panel in addition to the nationally recognized hug timer. We did a “turn the panel into the audience” at the end when they asked Kaiser Permanente the questions, and Danielle Cass (@DanielleCass) was on hand to create just the right amount of tension. Oh, and I asked everyone to come right to the stage, bring a chair, stand or sit, to be as close to the people we serve as possible. Pacing, moving around, light calesthenics are all fine, tuning the neurochemistry for a lasting impression.

This is the first group of members I have hosted that span the generations, from Gen Y all the way through Baby Boomer. And guess what, they defy stereotypes, they have as much in common as they do not, and the things they ask for are a what we are here to do anyway.

I don’t have photographs of the actual panel because I couldn’t shoot photos and facilitate at the same time :). I’m working to get some that were taken by our professional photographer and will put those up when I get them. It was gratifying to see the videographer nudge their way into the crowd to capture what was happening, and then tell me later that our members’ voice was meaningful for them, too.

Reminder of a few tenets of member/patient inclusion (and yes, we get the badge):

  • Any member is better than no member.
  • Don’t spend time looking for the “right” member to participate. They are all the right member.
  • Don’t say you couldn’t find anyone or that they are too busy to help you. They will help, all you have to do is ask.
  • Inclusion means listening as much as talking.
  • Listen. Really listen. And then teach back. Just like we ask them to do with us.

The mentors

I have at least 9,180,000 of those (members + Kaiser Permanente staff + all of Washington, DC + … ) too, with a few special ones in attendance and in leadership.

Katie Rovere (@katierovere) and I have been in a Co-mentorship relationship (GenY/GenX) for a year now, and she was present and leading a conversation about Generation Y in the workplace, as Board Member of GenKP, the Business Resource Group for Generation Y employees. GenKP, by the way, was just honored in Forbes magazine as #3 on this list: The 10 Companies With The Happiest Young Professionals – Forbes.

When Katie and I began our journey, I don’t think we could have imagined that her work would become so recognized in our organization and across the nation. The best part is, she did it herself.

I have many other co-mentors and I aspire for people to call me co-mentor, too. Here are the photographs of just some of those people.

The secret to failure is bouncing a ball alone, so why would we want to do that? Luckily, we don’t have to. Partnership always works better.

Thanks a ton to April Kennedy and Deanna Konrath from Kaiser Permanente Information Technology for creating the space for all of us to serve better in.

What “Patients included” looks like : 2012 Permanente Executive Leadership Summit

Precious Cargo, our members/patients and their families, Permanente Executive Leadership Summit (view on Flickr.com)

The bi-annual-ish Permanente Executive Leadership Summit just concluded, in Goleta, California, and I can say that I learned a lot about what “patients included” looks like.

This year, for the first time, we invited 4 Kaiser Permanente members and their families to join the meeting. Kaiser Permanente member Regina Holilday ( @ReginaHolliday ) actually paved the way for this group in 2010, as the very first patient to ever attend this meeting. Want to see what she thought of it? We did a short video to capture the moment.

What I found out at this meeting, though, is that this wasn’t the only way patients were included. A physician colleague, Kerry Litman, MD, did a presentation on video storytelling, where he brought videos of patients that he’s recorded in his leadership work. Some of the videos show positive outcomes, some of them introduce us to patients and experiences that make us wish for better. One colleague of mine said it was the first time he’s cried at this meeting. Another said to one of our members:


The voices of our patients were also broadcast as the opening sequence of one of the days, taken from the work of Kaiser Permanente’s groundbreaking video ethnography projects. You can read about those here: Now Reading: Another way to listen, Video Ethnography | Ted Eytan, MD.

And then there were the actual members. They were recruited because they are experts in the area of health care they came to represent, expertise that they obtained involuntarily. These included – social media, palliative care, video storytelling, stroke prevention, and transitions in care. In this way, they contributed to the conversation and the learning by helping us focus and allowing us to ask questions, and maybe to understand that we don’t understand their experience — yet.

We gave the project a title, “Precious Cargo,” because one of the videos of our members reminded us what our members/patients are to us. Each member/family was assigned a host, and I assigned myself to Mackenzie Marsh ( @mackenziemarsh ), an actor and casting director in Southern California. Her dad, Bill Marsh, MD ( @MDAI ) has been a mentor of mine and general source of over-the-top inspiration, and in his work to engage our colleagues around the future, often invokes his daughter. This was our chance for her to come and tell her story, and now my head is full of ideas to learn more.

I was given the chance to do a short interview with three of our Precious Cargo attendees, which is being edited as we speak. We wanted to capture their feelings and experiences to encourage other patients/members/people and health care leaders to involve them more. I will link to/post that video when it’s done.

I found out that including patients does require great care and work. This includes a proper consent process and attention from the time of registration through the entire event. It’s modeling what we would want for an actual care experience in any medical center.

I also found out that I am surrounded by colleagues who are just as passionate about our members’ experience as I am (I am not that smart and my ideas are not that unique, after all). No one in this process told us we could not do this, we just needed to be the ones to do it, and we did it, as a team. Thank you Carol, Robin, Jim, Joanne, Rivka, Mark, Violeta, Jann, Dina. Also Amy Compton-Phillps, MD ( @amyleecp3 ) – being member-centered means having good leadership, not the absence of it.

Kerry Litman’s session included 2 of our members who were filmed and told our group about their experience and why they shared their story:

In the course of preparing for the session, we discovered that Veronica and Valentin had not seen the video that was created and used to teach other doctors about their care. This meeting served an additional purpose then, to show them that they did make a difference. It is a beautiful thing when they make a difference with us and we get to see it together, isn’t it? (It is.)

Here’s the text message that Veronica and Valentin sent me when they arrived home. I’m sharing it with their permission, to encourage the hearts of other health professionals who wonder if this is worth it. It is.

“We made it home safely. We would like to thank you for a wonderful trip & for loving what you do, being able to be part of a program or project to reach out not only to Dr.’s but ordinary people like me is beyond amazing. Thank you! & God continue blessing you and your family.” – Veronica and Valentin Aguilar

Even the involuntary patient is resilient, social media helped. Christine, Part III – Resolution

You can read Parts 1-3 of Christine’s story here.

In this Harvard Business Review article on happiness (“The Science Behind the Smile“):

Much of the research confirms things we’ve always suspected. … Healthy people are happier than sick people. People who participate in their churches are happier than those who don’t. Rich people are happier than poor people. And so on.

That said, there have been some surprises. For example, while all these things do make people happier, it’s astonishing how little any one of them matters. Yes, a new house or a new spouse will make you happier, but not much and not for long. As it turns out, people are not very good at predicting what will make them happy and how long that happiness will last. They expect positive events to make them much happier than those events actually do, and they expect negative events to make them unhappier than they actually do… A recent study showed that very few experiences affect us for more than three months. When good things happen, we celebrate for a while and then sober up. When bad things happen, we weep and whine for a while and then pick ourselves up and get on with it.

Christine is now walking (view on Flickr.com)

This is Christine today. Her injury is resolving – she’s now walking! This is after 12 weeks of no ability to ambulate. I had a reunion with her and asked her what she was thinking and feeling.

In contrast to our visit last time, when she was energized about improvements to the health system, she’s now focused on her experience and that of others. She says that she’s approached by a lot of people in public who give her advice or tell her their stories.

I asked her about this and she wondered if these experiences (being the involuntary patient) are so defining in their lives that they are driven to tell others about them.

Christine doesn’t want that though – in fact, when she talks to me she refers to her injury as “not that serious compared to other people” – which is amazing for me to see – a testament to the resilience of people.

It’s possible that she may even forget about a lot of it as she focuses on her career, her family, her relationships. 

She told me about this note that I sent to her from my awesome colleague Kayt Havens, MD who read the first post in Christine’s blog:

“can’t tell you the number of patients I see at the VA for whom this article will give solace…thanks yet again”

Christine said this feedback was meaningful (her exact words were ‘it almost made me cry’). She told me that sustaining an injury like she did, with such a long recovery, requires daily thoughts about the future, the next day, and a reliance on a support network that a lot of people don’t have, or if they do have, can’t be there all the time. Christine would like to see a world where people in her situation can reach out to other people to get this support. In an easier way than random Google searches. And she says, physicians not required, this is not about getting medical questions answered.

She has fleshed out many more lessons learned in her blog, which she said has been therapeutic to write – she looks back at in a little bit of amazement about where she was.

What did I learn? 

This is the first time I have ever followed a patient as a person who writes a blog and who happens to be a doctor. I didn’t expect that Christine would be this patient, and neither did she. She said it so well:

If I could just get a redo on those 3 seconds…..3 seconds….sigh.

Three seconds can change your life. Besides being reminded to cherish every second we do have,  I learned that every patient, involuntary or not, will make choices about where to fit their health care experiences into their lives.

Some patients might become health activists as a result of their experience. Some may not, and they don’t have to, they’ve chosen to live their lives and reach their goals through optimal health.

On the one hand, the resilience of the human body and the ability of people to move on works against health care improvement, because people forget. Therefore, its our job, the people who work in health care, to remember on their behalf, and carry their stories with us. It also means that the patients who do become health activists and leaders in health care improvement (the Regina’s, the Kait’s, the Dave’s) are carrying the flag for a lot of people – we are fortunate to have them.

Before concluding part III, I want to show Christine’s progression as captured in photographs, from injury (and disempowerment), to information (and empowerment), to resolution (and resilience). All of us know or will know patients in all phases. Keep this in mind when you see someone in any phase – it’s a journey, and they may not see themselves defined by their health condition, even if, to the observer, it seems that they are.

The people you see may not be as open with you as Christine has been here. However, like Christine, they will always be awesome.

“We grow strong in the broken places.”

Thanks for reading.

2012 Tib Fib Ankle Fracture 8483

Pain and the compassion quotient – sent home, little information  View on Flickr.com

Information and empowerment – iPad + printed medical record – View on Flickr.com

Resolution and Resilience – healing, focused on life – View on Flickr.com

Photo Friday: Who’s The Hero? They all are, when riding the Regina tsunami

I know the photo’s a little fuzzy (there’s a clearer one of Sully below), it shows my view of things at the National Press Club – Captain Chesley “Sully” Sullenberger on the stage, Leroy Jones, Jr. ( @technicaljones ) in the audience, wearing his Walking Gallery Jacket, entitled “Supermom 1976”.

I went back and watched the story behind Leroy’s jacket, because I remembered it from last year – his mother, diagnosed with sarcoidosis, given 6 months to live, in 1976, survived to 1996, hospitalized every year, with what he said was an “amazing spirit.” You can watch the story and see a clearer photograph of the jacket here.

My view made me answer the question with, “they all are,” and that’s what brings me to these things, because of what’s on stage, and because of what’s off stage.

Because of what’s off stage, too

Imagine what the world would be like if everyone wore their story on the back of their jacket. And, actually, you can, on June 4, 2012. See you there – don’t forget to register!

More photos below, Enjoy

Thou Shalt Not Stand Idly By – Yet our health care system does – Kait and Ted’s story

“Thou Shalt Not Stand Idly By.” Click to enlarge, courtesy Iris Eytan, Esq.

My sister, who I wrote about recently, took the photograph in this post when I asked her, “What inspired you?” because she inspired me. I remembered visiting her a year ago, while she was working on the case, and how resolved she was to make sure that Tyler would not be imprisoned unjustly because of his disability. Last week, she was successful.

This picture hangs on her office wall – you can see the Denver skyline in the background. On the bottom of the photo you can see 3 years of work to save one person, Tyler Sanchez. On the top of the photograph is the inspiration (read more about the origin of the expression here).

The picture shows what it takes to save a life. Sometimes it doesn’t take much work. All of the time, it takes the ability to care.

The people who serve in the health care system, who are uniformly exceptional in my experience (you have to be to do a job this hard), have an incredible ability to care. 

Why does our health care system not let them?

What happened last week – Kait and Ted’s story

On Tuesday, Kait sent me an e-mail with just the subject : “Advice?” In it, she described acute withdrawal symptoms she was having from her anti-depressant because her mail-order refills had not arrived in time, and did I have any ideas that did not involve an emergency room. There were a few complications – she was not in DC at the time, she was in Baltimore visiting her girlfriend.  Her primary care physician, based in Maine, was not available because of a state holiday there.

I immediately called her and proceeded to do my best to help her get care urgently.

I contacted the Baltimore Medical System and reached a medical center manager, who said Kait could not be seen that day. She escalated the issue to the Medical Director of the entire system – could she be evaluated quickly and given a refill of her prescription to arrest the acute withdrawal until her regular supply arrived? 

She called me back and said the answer was no.

I was told that all of the care providers were full that day and a new patient would not be seen that day. Now, I have been to Baltimore Medical System (see my blog post from the experience: “A resilient population” – Baltimore Medical System”)  and I believed what they told me. I was told that she would need to go an Emergency Room or attempt to book for the next day, with no guarantees.

I gave these options to Kait. Johns Hopkins ER it was going to be. Again, I tried to assist by calling the Johns Hopkins ER to facilitate the care for them and for Kait. It usually makes things easier/faster for everyone, if the receiving physician can know what’s going on – the “warm handoff.”

I called the Johns Hopkins Physicians Access Line, for an emergency physician referral, which is what I could find on their web site. I was transferred and then hung up on. 

I asked Kait to keep the communication up by texting me her experience as it happened. Here’s the interaction between us:

Kait:: I fear the fix is a very long way away. Until we get parity through govt, no insurance will bother to cover it properly. 3:13 PM
Kait:: In a room. Eye exams happen here. But I’m guessing they just want me to be seen. Hahaha 3:24 PM
Kait:: No idea what will happen here. No one has asked me for proof of meds, taken a hx or asked any pertinent questions. 3:25 PM
Kait:: They did ask if I had any pain. But they didn’t mean emotional- I don’t think. 3:26 PM
Kait:: They did a survey. Do I want more info on depression, high blood pressure, and several other things I’M ALREADY BEING treated for. 3:27 PM
Kait:: I answered no. They also asked if I wanted an HIV test. And they tried to tell me it would be anonymous, even though it would be in my record. 3:32 PM
Kait:: They also asked if I would be willing to use a kiosk to check my med record and make sure the info/med lists were correct. I said YES! 3:38 PM
Kait:: Ok, now have seen an NP. She is really good. I may have to be really nice about this experience. 3:39 PM
Kait:: Script in hand 3:51 PM
Kait:: Seeing about a voucher for $ for meds 3:54 PM
Me: Cool! I’m saving these texts. 3:54 PM
Kait:: Amazingly kind. 3:56 PM
Kait:: ER security totally dropped the ball and sent me on a snipe hunt for the wrong social worker. Heading back to ED to get the RIGHT social worker. 4:00 PM
Kait:: Apparently the correct SW is in a trauma room right now. Left hand, right hand – get familiar. 4:03 PM
Me: Omg this is getting hilarious. 4:36 PM
Me: It may be more therapeutic than the medication 🙂 4:36 PM
Kait:: Yes. And I saw the SW finally, but -get this. The vouchers can’t be used for Psych Meds. 4:41 PM
Kait:: So I have two discount cards. My girlfriend will front the $ if I need more than I have to fill the 15 pills. 4:42 PM
Kait:: Laughter IS the best MED. 4:42 PM
Me: Totally! I am on board but my gvoice will store the SMS for storytelling purposes. Keep laughing. 4:43 PM
Kait:: When I’m not sobbing… 4:44 PM
Kait:: 🙂 4:45 PM
Me: Laughter always wins. Send the serotonin soaring. So does love. 4:45 PM
Kait:: Yes, that too. 4:46 PM

See something interesting? As she gets closer to a human being in the system, the “care” part of health care becomes more apparent.

If you think this only happens to people without access to care, you’re wrong. 

I am breaking the silence on an almost identical incident with someone very close to me, my mother, who, as a medicare beneficiary has access to too much care.

She was referred to a sub specialist for a superficial nerve block for severe pain – the kind of nerve block that a family physician can easily do (I have done many myself). When the injection did not work and she called the office of the sub-specialist in severe pain, she was told by the office staff, “Go to the emergency room, we are full this afternoon.” They were adamant, she told me.

I know what would have happened if she went to the emergency room -> narcotics, maybe an admission to the hospital, maybe an infection, a medication error, a fall. All because of a failed superficial nerve block.

I called the sub specialist’s office from 2,500 miles away, got the physician on the phone and asked him if it was possible that the injection was misplaced and could he try again (it is possible to miss the nerve). He agreed this was possible and pleasantly and helpfully said he would be happy to and could my mother come right in. She did, he performed a re-injection and the pain was completely relieved. 

Commonalities – amazing people, less than amazing system

With all of the talk that the emergency room is overused and medical homes are the answer, where’s the walk?

In Kait’s case it was made clear to us that this medical emergency, easily treated in the outpatient setting, would not be managed anywhere but an emergency room, against her wishes, and really against appropriateness. What if she was hemorrhaging blood instead of serotonin, would the outpatient system turn her away before stabilizing her? Acute anti-depressant withdrawal due to lack of medicine is a complete waste of Kait’s time. It could have wasted her life. 

My family’s entire experience could have started and ended in a family physician’s office, without any intervention from me.

Making every day count

I’m going to reveal something in this post that Kait doesn’t know yet. I was able to receive her e-mail and act on her behalf because of a mistake I made right before she contacted me. I read the time wrong on a flight and arrived too late to the airport. I missed the flight, I would lose a day of travel, and it was all my fault. As I walked away, I said to myself that I would make sure that this day counted for something. Now, I am so happy that it did.

People who know me know that I do not use my physician credentials to facilitate care for myself – I don’t even like being called “Dr.” When it comes to other people, though, I will leverage the credentials to the max (just the “MD” part, which I own, not my employer’s name, which I don’t own). That’s why society provides those credentials to us, to be used to lessen suffering. 

Not standing idly by.

I really want more than to lessen suffering for just Kait or my family, though. I want our health care system to change. For real, not pretend.

And…. the only solution I have found, the only one, after 20 years in medicine, that will solve this problem, is to have the patient in the room.


Kait Roe has given explicit permission to share details of her care experience on this blog:

Ted, I LITERALLY have no secrets. If someone doesn’t hire me because I have a mental illness (which this episode clearly shows is controlled phenomenally by medications) I don’t want to work for them. And wouldn’t that be a fun post! As for the choices. Print it all, again. I mean that – and I’ve been back on my meds for two days and feel quite myself again. No crying for two days! 

Now Reading: Should physicians disclose conflicts of interest? Should patients?

These two papers put together provide the patient experience impact of financial ties to industry as well as the physician willingness to disclose them.

In a previous post, I wrote about what physicians-in-training ask patients when they are admitted to the hospital (not enough). These papers are about what physicians tell their patients about their financial ties, their prognoses, even medical errors. The answer is the same – not enough.

In Iezzoni, et. al, a cross-specialty survey of 3,500 physicians with good response rate, was done, with this conclusion:

Overall, approximately one-third of physicians did not completely agree with the need to disclose serious medical errors to patients, almost one-fifth did not completely agree that physicians should never tell a patient something untrue, and nearly two-fifths of physicians did not completely agree that they should disclose their financial relationships with drug and device companies to patients.

I spoke to author Lisa Iezzoni about the study and her findings yesterday, with a specific focus on the role of patients. She connected me with the Wolston paper, written by a patient about her experience as a multiple sclerosis patient receiving care from a neurologist with financial ties:

I knew that I had felt pressured to take medications by my neurologist. When I found that he had been paid large sums of money—six times my yearly salary—to work for the manufacturers of those same drugs, my loss of faith was complete. I never returned to his neurology clinic again.

Most patients don’t have the resources, including the sense of empowerment, to ask questions and collect data, and we talked about how this will hopefully change, with a demographic shift, as well as greater data transparency.

One such resource is Dollars for Docs, that lists payments to physicians. I call it “the database I am not listed in and never plan to be” . As I was speaking to Lisa, I realized the reason why I support full transparency. However, it’s not that I support transparency, I support freedom from conflict of interest (see my conflict of interest statement here), and I don’t see how payments to doctors support clear judgement, as the Wolston account demonstrates.

With regard to the issue of disclosing medical errors, I think, again, it is patient involvement that matters. I posted about this excellent article in The Permanente Journal, and will copy again what one physician learned when he was brought together with a family through the Kaiser Permanente health care ombudsman program:

This process of explaining myself, opening me up to colleague scrutiny and patient disappointment, was by no means easy. Nevertheless, I know the price paid was infinitely less than living with the thought I had caused harm to a patient and did nothing to remedy it with a truthful disclosure and a heartfelt apology.

and

Thereafter, I followed-up with my patient and her family, explaining the systemic changes made to prevent a wrong part from ever being introduced during a surgical procedure.

The definition of underrepresented minorities – it is old and needs updating

The other thing that caught my eye that I am sensitive to were the analyses of “underrepresented minority” physicians in the piece, which are defined as “race or ethnicity other than white or Asian.”

We discussed the fact that even though a question was asked about lesbian, gay, bisexual status on the survey, these were not included in this group or in the analysis. They are not included in the analysis because the numbers of this minority group identified was too small to be analyzed (confirming their underrepresented status). They are not mentioned as part of the group called “underrepresented minority” because this term does not officially include the LGB group, or as Lisa pointed out, physicians with disabilities.

The minorities’ attitudes who were analyzed showed differences that are important. We should not forgo the ability to learn from the diversity of our profession if we want to be the best doctors possible.

What about patient disclosure?

While reading these papers, an interesting discussion started on Trisha Torrey’s blog about “What is a real patient?” In the world of greater patient involvement, disclosure may be important as well. When we recruit patients and families to improve the health system through their experience/perspective, it will be helpful to know what their ties are to the health care system itself. This is not so they can be disqualified, it is so more people can be  qualified to have air time when people organize panels called “patient/caregiver perspective. “We are all patients,” while being a great thing to say to equalize professional/patient relationships in the room,  is not a substitute for “there is a patient in this room.”

This could be a great addition to the already great resource that SpeakerLink is. It would also demonstrate that patients are modeling the behavior that we expect of our physicians.

Now Reading: Yikes! What physicians in training don’t ask patients admitted to the hospital

The hospital can be a very scary place, and when I read this study, I immediately thought that it would bring to life the worst fears of our patients, their families, and their doctors too.

The paper describes structured observations of PGY-1 and PGY-2 (first and second year out of medical school physicians-in-training) doing initial history and physical examinations of patients in the hospital.

As the title says, the study was “single-blinded” – the physicians observed did not know what they were being observed for, just that they were being observed (consent was obtained from both the patients and the physicians).

And… while patients were asked 100% of the time what medications they were taking (score for medication reconciliation), they were asked what they did for a living 4% of the time, level of education 0 % of the time, and from 0 to 100% of a list of other important pieces of information. Same general trends were seen in physical exam performance. Take a look at the charts by clicking on the link above and see what thing you would want your doctor to know if you were put in the hospital wasn’t asked.

Average time observed doing physicals and history: 7.3 minutes for history, 5.29 minutes for physicals, average time claimed in a survey of the doctors: 28 minutes and 15 minutes respectively . Huge discrepancy.

36% of the time, the physicians did not introduce themselves to the patient.

72% of the time, the physicians did not explain what they were there to do.

Remember, this is admission to the hospital.

“Unclear what the most effective approach would be to change these behaviors”

This is the ominous sounding statement made in the discussion by the author, who appropriately conveys his dissatisfaction with these results, and the fact that the physicians have been taught what the right things are to do.

From my own experience, I believe him. The issue isn’t knowing what to do. In my own training, I didn’t explore the patient and family experience as much as I should have. My residency faculty really helped me with that. At the same time, they were under tremendous pressure to balance educational requirements, the needs of patients getting care, and the needs of their fellow physicians and nurses that they recruited to participate in our teaching. Sometimes this balance was not balanced in a stressful environment.

Could we recruit patients and families also?

As much as we recruit quality faculty to teach residents, couldn’t we recruit patients and families, too?

It’s a familiar experience after a resident takes care of a patient in the hospital to be asked by the patient if they can join the resident’s practice. What would it be like if each resident needed to recruit 1-3 patients that they took care of to become part of THEIR (the resident’s) care team? Imagine them asking one of their patients or their family on discharge, “Mrs. Smith, as part of my training, I need to have 3 patient advisors who will help supervise my training, would you be available?”

Interestingly, an example of the clarity that patients bring to a physician’s development at any stage of practice-life comes in the same issue of The Permanente Journal, from a patient with an adverse outcome (“Bridging Physician-Patient Perspectives Following an Adverse Medical Outcome

Until my mother went through this experience, it never occurred to me how much medical professionals ask of us. Our family was asked to entrust the care of our loved one to strangers, her life and health to a system that sometimes creates barriers for the sake of efficiency. Then in the face of an error we are expected to stay quiet and accept this devastating impact on our loved one.

This article speaks about the HealthCare Ombudsman/Mediator Program at Kaiser Permanente, which brings patients and physicians together to resolve communication, quality, and trust issues. In the same article, a physician who discloses a surgical error carefully to a patient and their family says:

This process of explaining myself, opening me up to colleague scrutiny and patient disappointment, was by no means easy. Nevertheless, I know the price paid was infinitely less than living with the thought I had caused harm to a patient and did nothing to remedy it with a truthful disclosure and a heartfelt apology.

and

Thereafter, I followed-up with my patient and her family, explaining the systemic changes made to prevent a wrong part from ever being introduced during a surgical procedure.

Could some of these people, during and after their healing, serve as advisors/coaches/guardian angels of our future physicians as they learn their craft? They (the patients) are who I see as my guardian angels today – this just speeds up that journey.

Is this farfetched, is this happening somewhere already? What are the nuances? Please post in the comments