“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

#nhssm : the RCGP’s Patient Online: The Road Map

#nhssm : the RCGP’s Patient Online: The Road Map
Recently the Royal College of GPs (RCGP) launched their Patient Online: The Road Map document which sets out how patients and GPs will be able to interact online over the next few years. I wondered how many patients actually knew that Patient Online existed.

Currently only 1% actually have access to any of the facilities, why? The answer is simple; the functionality has not been enabled by the practice. In fact only 37% of GP practices have actually enabled the functionality. As a patient I find that staggering. 42 million people have taken the time to register to say they wish to use the facility yet the “on” button hasn’t yet been pressed.

Now Reading: The sustained psychological distress from not sharing information with patients

The title of this post is a riff of a line written by our ancestors in 1991, that I loved so much (see: Now Reading: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded” | Ted Eytan, MD).

Back then, McLaren, et. al, had decided to stop pleading with the medical profession to stop keeping secrets and just state that it was time to stop.

Now 20 years after that, Department of Veterans Affairs Rockstar in residence, Sue Woods, MD (@suewoods) is going one step farther, by bringing the voices of the patients affected forward.

“I’d like to know, what you think and what you know, and what you’re predicting. So, rather than just write it in there, tell me and then write it”.

The VA Pilot – the most amazing natural experiment in health information technology history

Sue may correct me on this, but I had been bugging her for years to tell the story of the MyHealtheVet pilot, which was the first generation personal health record put out by the Department of Veterans Affairs. It didn’t look pretty. It didn’t allow messaging to the doctor. It was private and secure, though. And it allowed something that no one else did during its time – unfettered access to the entire medical record by patients (via a secure, private portal). I don’t know why it was planned this way, it just was – one of the most amazing natural experiments in the history of health information technology. While every other medical / health system in the United States was trying to understand how to allow patients access to “parts” of the record “some” of the time, the 7464 patients in the pilot group simply had access to everything that was about them.

This paper is the story, from the patients’ point of view of how that went.

I would like to add one story from my own experience, and that is asking not one, but several doctors at the Department of Veterans Affairs during this pilot period about the experience of their patients having full access to everything they did. I seemed to get a shrug here or there, a kind of “they do? Oh, ok.”

While everyone else was working to do the “right” thing in HIT, these patients benefitted from the “wrong” thing

Prior to the era of OpenNotes, it was very much the “wrong” thing to let patients see what their doctors wrote.

That’s where the title of the post comes in – it’s not that we have to worry that letting patients see will cause distress, it’s the not seeing that causes them and us distress. We know that much better now thanks to the OpenNotes study (@myopennotes) (Many blog posts from me about that here) and from the work here.

The “what do we think we’re doing here” thought

In discussing how this research made her feel (see: Experiences with open notes are meaningful and profound, Part I. And started this blog. ), Sue talks about how moved she was in hearing about patient and family caregiver experiences.

When I hear the stories of people/patients myself I see the parallels. The quotes from patients here show the desire to have control and insight into one’s health so that (a) one can be healthy (b) one can leverage their health to live/love/learn better.

Doctors aren’t real gabby and they never tell you everything. Even if you ask questions, they’ll sort of slide around them. They don’t have the time, you know. I found stuff out that I was just amazed at, truly, about myself. [FG4]

Have you ever met a person who wanted to be unwell? I haven’t.

Sadly, they shut off this pilot in 2010, which I think is replaced with something that’s more locked down BUT with Blue Button access, so nearly the same? (I’m asking Sue to add this info in the comments).

Communication is the key and if you can’t communicate with your physician, either electronically or verbally, and this particular vehicle that we had given to us, was to me personally one of the best communication tools that the VA’s ever come out with. [FG3]

I like this work so much because it illustrates the best practice – when it’s not clear what we’re supposed to be doing, just listen to the patients, they will tell you. And if you’re ever unclear that listening to patients is the right thing to do -> read.this.sign.

Thank you Sue for putting this experience together in print, and to the Department of Veterans Affairs for not knowing if you could do it until you did it.

73 Cents, The film starring…Regina Holliday

On a mission

I saw the 73 Cents film for a second time this weekend, at Our City Film Festival, in Washington, DC. Hard to believe that we are almost at 4 years since the mural was started. And still really really hard to believe that Regina (@ReginaHolliday) started painting within a week of her husband’s death.

Check out the the film, it’s kind of a whirlwind around the influence that a person can have, if they are dedicated.

More photos from my time with Regina below. It was a cool moment when, during the Q & A, a member of the audience asked, “Have you had any impact.” 🙂

We continued to contemplate some non-compliant scheming afterward. I love that she can talk, think, and paint at the same time. How does she do it?

Now Reading: Do people who use PHRs use health care more?

Therefore, the findings reported by Palen et al in this issue of JAMA will be sobering for patient portal enthusiasts.

Not really, because I wasn’t under the influence.

About a month ago I was walking with Christine Sinsky, MD, who is a passionate advocate for usability in Electronic Health Records (see her testimony in 2011 here). I told her “5-7 years ago, your work would have made me anxious, because it might prompt people who are pessimistic about the future to not allow our profession (and mostly, our patients) to see the benefits of health information technology while they were just being envisioned.”

Before I discuss the data, I want to celebrate two statements that David Bates and Susan Wells make in their editorial:

The (linked personal health record) appears to be dominating the scene and offers many advantages because it can include specific information from the medical record that is difficult and time consuming for patients to access otherwise.


Personal health records are here to stay, and the tethered (linked) architecture appears to offer the most benefits.

Hooray – David (who is truly an expert in the field and who I had the honor of shadowing in 2007) puts to rest the ongoing myths that (a) PHRs can’t be adopted successfully by large numbers of patients and (b) PHRs that are linked to actual physicians are somehow not really PHRs. Kaiser Permanente’s adoption numbers are near 4.1 million at time of this writing, and represent 63% of the eligible population of users.

Now the data – using a retrospective cohort design, colleagues at Kaiser Permanente Colorado found that rates of office visits, telephone encounters, after hours clinic visits, emergency room visits, and hospitalizations were higher for people who used Kaiser Permanente’s My Health Manager compared to similar patients who did not access or use My Health Manager from 2005-2010. They started the clock on the day the patient signed up for My Health Manager for the MHM User groups. They started the clock on the median date of patient enrollment for the Non-MHM users. I have a question into the study authors about this, since signing up for My Health Manager is usually tied to a visit, which could be tied to increased health care usage in general (response from the study author is in the comments below – added 12/6/2012). The same is not true of the date chosen as the start date to measure for the control group. The study team did a thorough job adjusting for age, gender, ethnicity, number of chronic conditions, and office visits.

So the answer to the question in the title of the post, for this group of patients, is yes. Ironically, this may actually quell the fears of the fee for service health care system and encourage it to adopt PHRs more rapidly. Previously, the concern was that PHRs would reduce reimbursement for visit-based care. So they’ll go faster, integrated care is already there, all the patients will win in the end.

There is NOT an answer to the question, “Do PHRs cause people to use health care more?” There is also NOT an answer to the question, “Do PHRs cause people to be more unhealthy?” In fact, previous studies at Kaiser Permanente show that there’s an association with greater health among users of the same PHR (See: Data Graphic: Patient-Physician E-mail improves care | Ted Eytan, MD). Another significant study shows that there’s an association with more care continuity, because people who use PHRs are more likely to stay with their current health care, especially in their first year of health system membership (see: Now Reading: Access to a PHR constitutes highly meaningful use – published data on member retention from Kaiser Permanente | Ted Eytan, MD).

It’s not clear exactly what’s going on, which means that the next best step is probably to dig into the patient stories to find out answers to the many questions posed by the study authors – are these patients more activated to begin with? Are they more unstable medically which is why they sought PHR use in the first place? Are they more or less healthy (able to achieve their life goals) because of the use of the PHR and associated health services? And a question from me – would their utilization be even higher without a PHR? The way to dig in, of course, is using the biggest innovation that PHRs have brought to health care – going beyond the data and listening.

This brings me back to my walk with Christine. I agree with David and Susan when they say in their editorial that it’s unlikely that studies where patients are randomly given (or denied) accesss to their health information online will be conducted. Happy to be told we are beyond that. People who worked to create PHRs created them to improve the use of health care, so that it would be safer, listen better than it does, be more health focused instead of health care focused. We’ll study that as we give patients what they want. I used to hear the term “turning visits into clicks,” which is really a healthcare centric view of what we’re here for. Interestingly, before I read this study I had the opportunity to visit with Anna Lisa-Silvestre, Vice President of Online Services for Kaiser Permanente (@ALSilvestre), in Washington, DC, and here’s what I tweeted:

I believe this is possible, I am happy that we’ve reached critical mass in being able to study and listen better to our patients, and I’m optimistic about the future. The video below, released with the study, touches on some of these themes below. Thanks for the excellent work, Institute for Health Research.

Photo Friday: OpenNotes Summit Theatre, Washington, DC, USA

Brian Quinn, Farzad Mostashari, MD, Michael Meltser, JD, Tom Delbanco, MD, Jan Walker, RN

I’ve written a bit about OpenNotes (@myopennotes) already, so I’d like this post to tell a story via photographs.

At one point yesterday, another attendee said to me, “Ted, think about this as theatre,” which I did.

You had:

  • Health system CEO’s and other physician and nursing leaders of our most prominent institutions moving aside to allow the patient to speak (that’s Michael Meltsner, who wrote the fantastic editorial “A Patient’s View of OpenNotes“)
  • An artist with an easel, painting away, quietly in the corner, taking occasional breaks to share the pain and harm of exclusion
  • Physicians and patients in multicolored jackets sitting around the table, watching, participating

No one seemed concerned or worried on this stage as they talked through one of the biggest changes in physician-patient communication in the last 40 years. The focus was on moving forward, tearing down the wall of information asymmetry, patient exclusion, and what Shenkin and Warner called physician dissatisfaction secondary to poor “patient-physician relations.”  (see: Now Reading: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded”).

Regina Holliday (@ReginaHolliday) texted me later and said, “wasn’t it super cool to have an easel at the table like that one. Could you imagine it 3 years ago…” It was super cool, and I would also add, reassuring and supportive-feeling. And I could not have imagined it. I wonder if Sheknin and Warner could have imagined it either as they pleaded with their colleagues in the pages of the New England Journal of Medicine in 1973. Probably not.

In 2012, this is normal. The script has been rewritten :).

Enjoy. Oh and one shout out to the researchers who have either mentored or co-mentored me in my own career, including Joann Elmore, MD who I got to have a reunion with, thanks to this project. I openly disclose that I am grateful many times over for the opportunity that the Robert Wood Johnson Clinical Scholars Program created for me to participate with the most incredible patients, physicians, people, dedicated to improving health and health care.