IHI Photo (and culture) Safari, with host Maureen Bisognano

Just how does the IHI feel about sharing….Maureen Bisognano points this out (View on Flickr.com)

Maureen Bisognano, the President and CEO of the Institute for Healthcare Improvement (@TheIHI) knows her way around a camera. 

I discovered this yesterday when she graciously offered to give me a tour of the IHI’s headquarters before we sat down to plan for the 15th Annual International Summit on Improving Patient Care in the Office Practice and the Community.

She told me I am definitely not the first person to have such a glimpse of the workings of this iconic health improvement institution, I am the first to take photos though. As I’ve said many times on here, not because I want to take pictures, because I want to capture the human spirit.

What became pretty obvious was this was a tour of the organization’s culture, and the physical manifestation of the space conveyed the values that are printed on the coffee mugs.

A few things to point out as you view the photos (click to enlarge any)

  • Things move fast here, in 90 day cycles. People often tell me to slow down, and yet even my heart rate quickened when I saw how the IHI plans its work
  • There is celebration, joy, and creativity throughout
  • The IHI Conversation Project is visible, as is WIHI Radio and the IHI Open School
  • She showed me the not-often-seen “graveyard” as she called it – the names of all the people who have ever worked at IHI, tucked behind two closet doors. 
  • There’s chocolate on one desk in the office – Maureen’s, which she shares with the IHI fellows, to invite conversation
  • The photo of the coffee cup was taken when I asked Maureen more than a few times if it was okay to post what I learned and saw online. This was her response.

I was joined by a great team planning the Summit, including Co-chair Gilbert Salinas, who is the official “Patient” co-chair of the summit. He’s also, I learned, the Kaiser Permanente sponsored safety-net fellow this year (see: Gilbert Salinas, IHI Fellow – YouTube). By coincidence, he’s also a Kaiser Permanente member, receiving care in the Southern California Region. It was and is a pleasure to work with and learn from him. The other co-chairs are Steve Tierney, MD, from Southcentral Foundation in Alaska, Somova Stout, MD, from Cambridge Health Alliance, and Ed Ellison, MD, Executive Medical Director of Southern California Permanente Medical Group.

Come out of your comfort zone with me

Maureen knows the photographer’s secret – we like being behind the camera. When I asked her if she wanted to be in any of the photos, she politely declined. However, when her team surprised me with birthday cupcakes (hello Virgo!), we convinced each other to break the rules.

Sometimes, in front of the Camera; Ted, Maureen, and Jenna (Virgo, Libra, Virgo) (View IHI Photo Safari 29948 on Flickr.com)

I/we hope you’ll join us in Washington, DC-adjacent in 2014 at the Summit. It’s going to be a ton of fun.

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.

Now Reading: OpenNotes results are HERE – “little impact on doctors, 99% of patients recommended continuation”

When I was visiting Group Health Cooperative in Seattle 2 weeks ago, I was involved in a conversation about releasing/sharing imaging results with patients online, as Group Health (@GroupHealth) has been doing for about a year (See: What Group Health Physicians are saying about sharing imaging test results with patients – 1 year later | Ted Eytan, MD). Bob Karl, MD, the Chief of Radiology, kept saying, “What more would you like to know about this non-event.” What he meant was that the fears that patients would be confused/offended/quick to call/email based on having this information were never realized, across 500,000 exams shared so far.

What great preparation for reading the final results of the OpenNotes (@myopennotes) project, whose publication embargo lifts exactly at the time of this posting. Articles are free – grab them and read them yourself.

When I opened the PDF of the original research article, “Inviting Patients to Read Their Doctors ’ Notes : A Quasi-experimental Study and a Look Ahead,” was I uncorking a bottle of champagne or opening a Pandora’s Box?

Answer: The former, definitely the former.

After a year of exposing the full text of physician notes to patients in three institutions, here’s what happened:

Doctors

E-mail traffic from patients was unchanged; many doctors reported that they did not know whether their patients were reading the notes; and hallway conversations, focus groups, and free-text survey comments suggested that many doctors were astonished by how little effect the intervention had on their practices. Several wondered whether the intervention had been implemented. One comment may best summarize their collective experience: “My fears: Longer notes, more questions, and messages from patients. In reality, it was not a big deal.”

Patients

In contrast to the fears of many doctors, few patients reported being confused, worried, or offended by what they read.

As it says in the title, 99 % of patients surveyed recommended that the transparency continue, all while having all the positive impacts that were theorized – sense of self control, understanding, and partnership in visits.

Curiously, between 17 % and 26 % of physicians at the three sites where the intervention happened indicated that they didn’t want to continue sharing their notes, however when offered the chance to actually discontinue, none did.

The new truth: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded”

This study adds the strikethrough. It doesn’t cause us to rethink the patient’s (and their family’s) right to know about their care – that’s already been rethought, they have the right.

It does cause us to rethink the patient/family ability to know about their care in a timely manner. With electronic health record technology, and as demonstrated in this study, “timely” can be as soon as the physician note is signed.

We’ve come a long way since, 1973, when, in 41 states, you had to litigate to see your medical record haven’t we.

As the patient editorial (see below) says, “Today, medicine has discarded the norm of evasion and deceit.” This is good, now our health system can reflect that norm.

Two editorials, one from a physician, a great one from a patient

There are two excellent editorials accompanying the research paper, which I recommend reading. The one written by the physician Carolyn Goldzweig, MD, “Pushing the Envelope of Electronic Patient Portals to Engage Patients in Their care,” interestingly puts the term “patient portals” in quotes, calling out the fact that they don’t give patients all of the information that’s contained in their medical records. Good pickup.

She then goes over the study and talks about how OpenNotes still poses challenges/issues.

I’m going to be honest. In my opinion this editorial was completely blown out of the water by the patient editorial, “A Patient’s View of OpenNotes

In yet another demonstration of the power of the patient story, author Michael Meltsner draws upon his experience as a child in a family affected by medical deceit – “A father saying nothing about the tumor that inexorably enervated him; a young mother spinning webs of deceit; a son raging against his enforced ignorance when the truth came out . . . as it usually does.”

He then talks about his experience as an adult, with a sudden, serious medical condition, and the opportunity to experience openness.

Besides confirming that OpenNotes study “strongly suggests that they (fears of reduced efficiency) are overblown,” Meltsner discusses the idea that patient involvement “frees doctors from being thought miracle workers or failed miracle workers.”

Embracing (the) Failure (of deception)

This is interesting to me – he states that transparency doesn’t cause suffering as a patient, it alleviates it, AND he believes the same is true for physicians.

I’m inclined to agree with him, as I have mentioned many times on this blog.

Training in the era of HIV plus my specialty (family medicine), taught that suffering was truly optional when it came to (a) keeping secrets from people and (b) not collaborating with the people we were serving.

It was a failure of my profession to believe that deceiving patients and families was healthy for our relationship.

So what next?  We could embrace this failure and leverage the technology tools we have to involve people in their care, efficiently, productively, respectfully.

Tom Delbanco, MD, told me a few months ago that he’s going to do this, for the rest of his career (see: “I’ve only been interested in this for about 30 years” – talking with Tom Delbanco, MD and Jan Walker, RN, MBA about OpenNotes | Ted Eytan, MD)

Regina Holliday (@ReginaHolliday) and I will also talking about this when we’re on stage at our joint TEDx talk next month at the Henry Ford Innovation Institute (@henryfordideas), where the theme is, “Embracing Failure”.

So….it can be done technologically, the physicians are impressed at the lack of negative consequences, and this experience seems to be repeated throughout the medical world (see Dr. Karl’s comments above).

These are all good reasons to move ahead with transparency.

Thank you, talented researchers, institutions, and Robert Wood Johnson Foundation Pioneer Portfolio (@pioneerrwjf) and (@rwjf)  for confirming that “because our patients want it” is one of the best reasons there is.

Comments and thoughts welcome, of course…

 

Photo Friday: Patient access edition – @MyOpenNotes visits My Health Manager

This week’s photograph is of Tom Delbanco, MD, Jan Walker, RN, MBA, and myself, at the Kaiser Permanente Center for Total Health ( @kptotalhealth ). We’re holding up our hands because Tom, who also makes films, noticed that all of the speakers in the video around the Center were gesticulating with their hands. When I told him that this was the direction we were all given when we did the blue screen work, he suggested this pose as a bit of a parody.

I had the honor of both meeting Tom and Jan, and giving them a tour of the Center as part of their visit to Washington, DC, to promote the Robert Wood Johnson Foundation OpenNotes project ( @myopennotes ). OpenNotes is my favorite RWJF project (Aligning Forces for Quality ( @aligningforces ) is #2 – they brought Kait Roe ( @kaitbr ) into our worlds after all ). Why? Because it’s answering, in a rigorous way, a question, a desire, a dream, of a generation of physicians and patients about what happens when patients see everything in their medical chart, on demand.

@myopennotes is studying - physician notes being on a list of what patients can see." href="http://farm8.static.flickr.com/7270/6881170256_5c27c2bea0.jpg" data-rel="lightbox-gallery-B8tA" title="">@myopennotes is studying - physician notes being on a list of what patients can see." src="http://farm8.static.flickr.com/7270/6881170256_5c27c2bea0.jpg" alt="" width="135" />

@myopennotes is studying - physician notes being on a list of what patients can see.' on Flickr.com" href="http://www.flickr.com/photos/22526649@N03/6881170256">What @myopennotes is studying – physician notes being on a list of what patients can see.

OpenNotes hopes to publish the results of its study in the near future (I’ve previously written about it here). Tom and Jan are embargoed from discussing the results as part of publishing rules, so I didn’t ask what they’ve found (and they didn’t tell me).

What they did tell me is that this work is their most important passion, which is a big statement if you consider the breadth of their careers.

What do I hope this project reveals? Simple answer – the truth, as experienced by the patients and their doctors.

From the way this study has been designed to the talent of the researchers who are doing the work, I already know that my hope will be fulfilled.

Thank you, OpenNotes patients, nurses, doctors, and staff, and we hope to hear from you soon! ๐Ÿ™‚

Most exciting thing in medicine is not going on in medicine – Podcast with Sue Woods, MD & Paulanne Balch, MD

Paulanne Balch, MD and Sue Woods, MD, from the mHealth Summit

Play

(click here to download directly into iTunes)

After seeing colleagues Paulanne Balch, MD ( @BPBMD2 ), a physician at Kaiser Permanente and Sue Woods, MD , at Department of Veterans Affairs ( @suewoods , also blogs at http://www.sharedhealthdata.com ) at the recent mHealth Summit, I wanted to follow up by interviewing them for a podcast on this blog.

We talked about their impressions of the summit, how a cell phone can be used as a tool for health (hint, it may not be as complicated as people think, based on real patient stories) and how and why the medical profession may change in this new era.

I respect and and drawn to Paulanne and Sue’s work in a big way, and it came to me by the end of the ‘cast as to why this is. They are physicians who are excited about the future, and optimistic about every challenge along the way. They are not bystanders.

Enjoy, feel free to let us know what you think in the comments or at respective places in the twitter/blogosphere.

Now Reading: Inviting Patients to Read Their Doctor’s Notes: Patients and Doctors Look Ahead

It’s been almost 40 years of publications and studies supporting patients in seeing the full content of their medical records, and physicians are still divided in their feelings about this. I personally experience this pretty regularly in dialogue with my health care colleagues.

Patients are not as apprehensive, which is a bit of an understatement. This is what the paper “Inviting Patients to Read Their Doctor’s Notes: Patients and Doctors Look Ahead,” published in the Annals of Internal Medicine today demonstrates (I will update this post with the URL when it’s available).

I have written about OpenNotes ( @myopennotes ) project recently and in the past (see the list of my posts here ). OpenNotes is indeed my 2nd favorite Robert Wood Johnson Foundation funded project (there are so many great ones! Aligning Forces for Quality @aligningforces is #1). This paper and accompanying editorial do not describe the results of the study, that’s coming later in 2012.

“The enthusiasm of patients exceeded our expectations”

The quote above is based on the findings that:

fewer than 1 in 6 patients was concerned about being worried or confused by reading their notes. Moreover, contrary to our hypotheses, we did not find that younger or more highly educated patients who responded to our survey were more likely to agree with the benefits than those who were older or had less education. It was also striking that many patients would consider sharing their notes with other people, including other doctors.

Figure 1 in the paper visually demonstrates that the enthusiasm is not uniform among physicians. The authors state:

The PCP respondents who declined participation in the project were much more pessimistic about open visit notes in general than were participating PCPs.

This is the essential finding, which I equate to, “here’s something in health care that most patients want to receive, but not all doctors want to provide.” In this situation, there’s a perception gap.

The editorial in the same issue, Access to the Medical Record for Patients and Involved Providers: Transparency Through Electronic Tools provides the experience from at least one institution (University of Texas M.D. Anderson Cancer Center). And, maybe there isn’t really a gap at all, once you go from talking to doing.

I read this editorial with a bit of trepidation, because I know all the phraseologies that physicians use to elegantly say “no” through prose (“needs to be studied more”, “more questions than answers” etc etc). All of that melted away for me when I reached this simple declarative within:

Why such caution?

The rest of the editorial discusses the experiences of patients and physicians with this full access since 2009. They say “Patients have become avid readers of their notes,” and:

There have been no adverse consequences and generally positive feedback from patients and physicians. Although physicians occasionally complain about the time it takes to explain something they wrote, feedback from both patients and physicians has generally been positive.

There is a healthy list of questions at the end of the editorial about the practice and the “we must study its impact” statement that ends so many discussions of this topic.

However, in the era of OpenNotes, questions like this have an answer on the horizon. The work to date provides documentation that there is a difference of opinion between patients and (some) physicians about the benefits of patient access to this part of the medical record. Good to know this and good to respect this, because division biases towards inaction, as they say in the LEAN world.

Luckily, OpenNotes is staffed by an all-star cast of health services researchers with an interest in understanding what the consequences of this openness are, in a rigorous way.

It will be worth the wait. And don’t count me among the pessimistic, in this or in anything ๐Ÿ™‚