Not like too many hospitals

#TPSER9 I write this after leaving the residents' and students' education programs in Telluride as I await the delayed departure of my Southwestern Airlines flight out of Denver airport.  It is delayed because there is a malfunctioning windshield wiper, and the mechanic (above) has been making repairs. We need to understand that this windshield wiper, on the co-pilot's side, is not likely to be needed while the plane is in flight as the airspeed cleans the windshield, or even on the ground taxiing, as it might not be raining. Nonetheless, quite appropriately, the flight will not commence--and passengers will not be loaded--until or unless it is fixed.

Let's contrast this with the procedures, or lack of procedures, followed in many hospitals.  How many times have surgeries begun without a proper time-out to ensure that all necessary supplies and equipment are at hand and in working order?  The lack of compliance with pre-surgical checklists is rampant throughout the world.  Sometimes this is from a lack of training.  Sometimes it is because an impatient surgeon starts a case in violation of the protocol, and his/her OR team is too intimidated to mention the issue.  (Remember this episode from the TV show ER? An associated story here.)

As I have said before:

Sometimes, I remind myself to be patient.  It is hard to change the medical system quickly.  But, more often,  I find myself agreeing with the words of Captain Sullenberger:

"I wish we were less patient. We are choosing every day we go to work how many lives should be lost in this country. We have islands of excellence in a sea of systemic failures. We need to teach all practitioners the science of safety."

I hope and trust that our attendees these last few days in Telluride will have the commitment and courage to make a difference during their careers.

An outcome review cannot pick and choose its findings -- or can it?

In the last two days, I have written two posts about articles in the Journal of Pediatric Surgery which, in my mind, raised ethical questions in the presentation of clinical data.  The topic was surgery undertaken to to repair a condition called pectus excavatum (sunken chest).  The major article contended that there had been an exceptionally positive record of this procedure, as measured by clinical studies.

Helen Haskell is the mother of Lewis Blackman, a boy who died from complications of the procedure on November 6, 2000.  When Helen read the March 2002 article, she wrote a thoughtful letter to the JPS.  Here, with her permission, are excerpts from her letter of May 13, 2002 to Jay Grosberg, MD, Editor in Chief:

You may imagine my surprise when I read the opening sentence in the results section of this article, "There were no deaths either after the MIRPE or the MRR." Lewis was a healthy child who died as a result of complications of the pain management regimen for the MIRPE procedure. Pain management has been a major problem for this procedure. While there were certainly standard of care issues involved in his death, that surely can be the case with any surgical complication, in any institution. This outcome can by no stretch of the imagination be considered irrelevant to a discussion of complications of this surgery.

The retrospective chart review in this study was structured so as to terminate four weeks before Lewis' surgery. While this may technically provide a rationale for failing to mention what can hardly be considered an inconsequential complication, it cannot help but raise questions about the intention of the authors, three of whom were intimately aware of Lewis' case. Furthermore, other serious complications that occurred at MUSC [Medical University of South Carolina] within the review period have also been omitted. . . . There is, however, no indication in the text that the list of complications in anything but complete. For those looking for information, such omissions are fundamentally misleading. An outcome review cannot pick and choose its findings.

The question is whether your intent is to allow your journal to function as a forum for competing advertisement or as a serious scientific publication. It is time for an open published debate, based on standardized and complete of data, on the pros and cons of the . . . procedure.

This is an elective procedure usually performed on healthy children, often for entirely cosmetic reasons.  You will search a long way before you find a parent who will knowingly vounteer his child for an experiment. Pediatric surgeons should be equally unwilling to volunteer their patients.

Helen received a reply from the editor saying the article had been "peer reviewed by three editorial consultants." He acknowledged that "the patients in the study . . . preceded the date of your son's experience," but "based on the information you have provided, the content of [the] manuscript would not be altered."

As noted by Rosemary Gibson and Janardan Prasad Singh in The Treatment Trap (page 122, with my emphasis):

The people on the front lines who lie down on the gurney are the forgotten ones.  The only shield they have is the wisdom to know the difference between solid evidence and commercial promotion. That wisdom may come from their own due diligence or a stroke of luck in finding good people whose sole purpose is their best interest.

The way I see it, the authors of this article and the editors of the JPS were not characterized by the last nine words in the previous sentence.

A medical journal's abdication of editorial responsibility -- Part 2

#TPSER9 I spoke too soon when I referred below to a 2001 article in the Journal of Pediatric Surgery where the editors decided to ignore the death of Lewis Blackman in a summary of cases concerning elective surgery to repair a condition called pectus excavatum (sunken chest).  A more extensive review was published by the same journal several months later in March, 2002 (Vol. 37, No. 3).  From the abstract:

Methods: From 1996 to 2000, 68 PE patients underwent MIRPE at one hospital, and 139 underwent MRR at another hospital. Ages ranged from 5 to 19 years (mean, 12) for MIRPE, and 3 to 51 years (mean, 17.3) for MRR. The mean pectus severity index was 4.2 for MIRPE and 4.9 for MRR (normal, 2.5). Results: There were no deaths after MIRPE or MRR.

One of the hospitals included in the survey was the one in which Lewis Blackman had his surgery and died. But the sample described in the article ended in September 2000, and Lewis died in November.

It would be virtually impossible for the authors of this paper--including surgeons from the hospital in South Carolina--and for the editors of the journal to be unaware of the Blackman case.  The ethical issues I raised in my first post are only compounded by this expanded article.

By the way, in 2005, the state of South Carolina passed a law named the “Lewis Blackman Hospital Patient Safety Act” to deal with the issues raised by this case.  As summarized here, it required all clinical staff in hospitals to wear identification tags, labeling job and status. The law also mandated that patients be informed of how they can contact an experienced doctor or summon help quickly when they experience medical problems in a hospital.

A medical journal's abdication of editorial responsibility

#TPSER9 One of the most moving and effective parts of the Telluride patient safety camps for residents and medical students is the presentation of the Lewis Blackman story (see trailer here.)  This is a heart-rending story about a teenage boy who undergoes elective surgery to repair a condition called pectus excavatum (sunken chest).  He dies within a few days because of post-operative complications which remain unremediated because of a series of medical errors and poor communication among the medical staff.  The date was November 6, 2000.

Less than a year later, an article was published in the Journal of Pediatric Surgery (J Pediatr Surg. 2001 Aug;36(8):1266-8.), authored by Lewis' surgeon and others.  The authors described the application of the minimally invasive surgical technique used for Lewis.  They pointed out that in 20 cases studied:

Average length of stay was 5.5 days. There were no early complications. Mean follow-up was 12 months. . . . One patient had a prolonged hospital stay of 7 days because of postoperative pain.

How could these study results be correct when Lewis had died the previous November, just a few days after the surgery?

We have to assume that the sampling of patients used by the authors ended in a manner that excluded Lewis' case.  Without knowing more, it is hard to know the scientific reasons for this limited sample.  That itself would be an interesting line of inquiry.

However, I am informed that the editor of the journal in question was made aware of Lewis' death.  Whether s/he questioned the authors about their sampling choice is not known.  But there is no indication, in the way of editorial comment or submittal by other authors, as to the issues raised in Lewis' case.

I'm not suggesting in any way that the procedure carried out by these doctors was inappropriate, but I am suggesting that the silence by the journal on this issue raises a question of editorial ethics.  Even if the death of this child was the result of circumstances not related to the specific surgical technique, it was certainly a death related to the surgery.  As a sad case of "the procedure was a success but the patient died," it warranted attention by those in the profession.

The silence by the Journal of Pediatric Surgery in this matter appears to represent a case of abdication of editorial responsibility.  Although it is years later, they owe the public an explanation.

Goal Play! audiobook is now on iTunes and Amazon

My book Goal Play! Leadership Lessons from the Soccer Field is now available as an audiobook on iTunes and Amazon.  It is also available as an audiobook on Audible.com.  Please check it out and listen to a free sample.

Of course, the actual book is still available on Amazon (in print and Kindle versions) and at Smashwords in almost in any e-book format you might desire:  Apple iPad/iBooks, Nook, Sony Reader, Kobo, and most e-reading apps including Stanza, Aldiko, Adobe Digital Editions.

Last thoughts on Telluride residents' program

#TPSER9 Over the last few days, I've provided some stories from this year's Patient Safety Summer Camp in Telluride.  I hope you've enjoyed them and found them of value (and made you envious of the students and faculty who were lucky enough to attend!)

Now, if you have time, take a look over at the Transparent Health website.  You will find observations there from the students and faculty members.  To whet your appetite, here's one from Stephanie:

I just can’t believe I am surrounded by such an amazing and inspiring group of people. I cannot even begin to reflect on all the incredible moments of which I have been a part so far this week (and it’s only Wednesday!) but this is definitely going down as one of them. From the team building and communication we learned from the Teeter Totter game yesterday to the powerful and emotionally stirring video on the tragic story of Michael Skolnik to the unbelievable scenery and serenity of the Bear Creek Trail hike this morning, this is an experience that can never be recreated but that I will hold in my heart and my mind forever. It is so easy to become jaded in medicine, especially as a resident, and this is exactly what I needed at this point in my life to reinforce why I went into medicine in the first place: for the patient.  I’m making a personal commitment to myself and to everyone here at TSRC that I am taking this home and will implement more patient safety measures and quality improvement at my home program at MedStar Georgetown University Hospital. I am going to start with resident education because I feel like this is the greatest need at present. We can each make a difference as long as we keep our eye on the common goal which is the health and safety of the patient, and thanks to this amazing week, I truly believe this and am ready to do my part.

As David Mayer likes to say, health care will change only if we educate the young.  The Telluride "campers," who are now alumni, are part of a growing cadre of young doctors (over 300 strong), who have fanned out to make incremental changes to improve the quality and safety of patient care and build an empathic health care system. Transformation does not come as a large one-time change in clinical practice: It comes from the sustained efforts of well-intentioned people in communities of care throughout the country.

Answering to Stewie's family

#TPSER9 I reported yesterday on the distressful case of Stewie, seen to the left, who met his untimely fate when a group of Telluride residents failed to properly execute a team-based procedure.  Was this adverse event preventable or not?  Poor planning and communication and finger-pointing may have contributed to the failure, but the inexorable law of gravity certainly played a key role.

This afternoon, there was an unexpected interruption, as Stewie's parents broke into the meeting, and the teams were confronted by the angry relatives.

Their comments evoked memories of happier days, when Stewie and his family were closely tied in so many ways.  (See below for a picture from the family album.)

But today they demanded answers.  "Was Stewie made aware of the risks of this procedure?" "Is there a detailed record of that disclosure?" "Was this the first time the doctors carried out this procedure?"  "Is anyone going to be fired?"

The residents responded.  They expressed true regret and sympathy, saying also:

It is still too early to understand exactly what happened.  As soon, as we know, you will know.  We will be totally transparent with you on that point.  Yes, he was informed of the risks.  It was a fairly new procedure, and I explained that to him.  Here are our cards: Please call us at any time, day or night, if you have questions or concerns. 

To my readers:  How'd they do?

Stewie faces the promise (or threat) of teamwork at Telluride

#TPSER9 The curriculum at the Telluride Patient Safety Camp is rigorous and multi-faceted, with the goal of enhancing residents' abilities to improve the quality and safety of care given in their home institutions and also their ability to make changes in their work environment. Team-building and teamwork are necessity components, and the residents today had a chance to engage in an exercise that stretched their competency in this arena.

Team 1 has 2 out of 6.  Will they make it?

A long plank is balanced on a cinder block, and a team of seven to eight residents has ten minutes to figure out how to get six people standing on the plank without losing balance. 

Team 2 on their way: 3 out of 6!

The rules require each person to get on the plank at its midpoint, one person at a time.  Once six people are on the plank, they must remain there for ten seconds, and then dismount in the reverse order.

Happy Stewie!

Underneath each end of the plank is a raw egg, which is crushed if the plank goes out of balance.  Patient harm is immediate and irrevocable.  The team's turn ends.

Poor Stewie!

Some teams designate coaches to be on hand (or hands and knees) to watch the plank carefully and warn of any imbalance.

The time pressure facing the teams causes real stress.

Lessons learned:  Have someone act as team leader, but being responsive to reports from other observers; learn from other groups' mistakes and from their best practices; be clear in communication; avoid rushing, even under the pressure of time.

Telluride Patient Safety Summer Camp

#TPSER9  I am very pleased to be attending and presenting at the ninth annual Patient Safety Summer Camp in Telluride, CO, organized by David Mayer and Tim McDonald (seen above).  Twenty-eight residents from around the country are here for the week under the following theme: “The Power of Change Agents: Teaching Caregivers Effective Communication Skills to Overcome the Multiple Barriers to Patient Safety and Transparency."

The learning objectives are that, by the end of the Patient Safety Summer Camp, residents will be able to:

1) Give an in-depth presentation that provides at least three reasons why open, honest and effective communication between caregivers and patients is critical to the patient safety movement and reducing risk in health care;

2) Utilize tools and strategies to lead change specific to reducing patient harm, and:

3) Implement, lead and successfully complete a Safety/QI project at their institution over the next twelve months.

This is jam-packed several days with lectures, videos, exercises, individual projects, team-building and the like.  If today's first day is any indication, this is a strong-willed and thoughtful cadre of residents who will make a difference in their hospitals and their profession.  It is an honor to spend time with them.

Dave posted this slide today as part of his introductory remarks.  It sets forth a key concept for the residents, that of mindfulness.  Take a look and see how Dave outlines its key attributes.  This is an excellent statement of purpose, one that can form the foundation for all clinicians to do better for their patients, their colleagues and for themselves.

Caution: Use 2 hands to dispose of trash

New readers may not be aware of my fixation on signage.  It turns out that signs are useful indicators of underlying problems in the work environment.  Signs that are designed well and placed well can facilitate the production of a product or the delivery of a service.  On the other hand, signs that are poorly designed or placed can cause confusion.  They are also telltale signals of underlying process flow problems.  This is true in health care and almost every other field.

My regular readers have come to see my occasional reports on signs.  Some are in Boston, but the most interesting ones often turn up in airplanes, like this clever depiction of a changing table.

This week's report comes from Southwest Airlines (one of my favorite carriers), where I noticed the following sign in the lavatory.

 

Here's another shot to give you a sense of the placement:

For those of you who want to spend a lot of time on the issue of the quotes around open and in, go to the "blog" of "unnecessary" quotation marks.  But that is not my issue today.

For today, we have to ask the question of why Southwest Airlines felt it necessary to offer instructions in the use of the disposal bin, along with the big red CAUTION sign.  Were people's hands getting stuck in the bin because they weren't letting go of the paper they were disposing?  Homer Simpson fans will immediately recall the episode in which Homes got his hands stuck in two vending machines at the same time. When the paramedics tried to get him out, they asked, "Homer, are you still holding onto the can?"

When it comes to hand hygiene, by the way, the instructions are counterproductive.  If I wash both hands and then use one to hold open the lid to the disposal bin, I have just gotten that one dirty again. 

Wouldn't it be interesting to hear from folks at Southwest how it came to pass that they spent thousands of hours and dollars designing, printing, and placing this sign?  What was the chain of command that led to this?  I don't know but I am guessing that the risk management section of the legal department had something to do with it.  I have not seen it on any other airline.  Either Southwest is breaking new ground in avoiding in-air catastrophes, or there is something worrisome about the people who choose this airline.

Patient Advocates: Demand payment!

Dale Ann Micalizzi, @JustinHOPE, Founder/Director/Health Educator at Justin's HOPE, posted the following note on Facebook:

Something needs to be said regarding pro bono work in healthcare: Please consider offering patient/family members a stipend or donation to their foundation when government or hospital organizations are asking for their assistance on multiple projects. I have 10 meetings next week and only one offered a donation for our scholarships. We will do this for free but most of us have a mission that we're working toward that depends on support. Most of us did not receive any compensation from the harm caused and have started improvement projects from scratch. Thank you. 

I responded:
 
You, and others, are being too generous. You and other notable patient advocates are now viewed as "trophies" when you are invited to help in this manner. It is perfectly reasonable to start to ration your time--at least in part--by insisting that hospitals, associations, and other institutions make contributions to your patient safety/education organizations. Trust me, those hospitals and other places always have money to pay for consultants--and you offer greater value than lots of those consultants!

Poor integration between hospital EHRs and NICUs

Responding to my story about lack of funding for electronic health records for pediatric nursing homes, Brian Carter, a superb neonatologist at Children's Mercy Hospital in Kansas City, notes:

The limits of meaningful use for HITECH also exclude all of my patients – newborns and young children (age 2 or less). These children, especially those managed in neonatal intensive care units, comprise a significant portion of the pediatric population dependent upon medical technology – even upon their discharge home – and are affected by complex and sometimes chronic diseases of childhood (pulmonary, cardiac, gastrointestinal and neurologic). Neonatal ICUs have long utilized EHRs, but often this occurred in large hospitals that either didn’t develop or adapt EHRs system-wide, or had a different system for other units of care. Today, many hospitals are hampered by EHR adoption, and many NICUs by having to integrate a smoothly operating NICU-oriented EHR system into the new broader hospital EHR, or totally refit or rebuild the NICU system and lose years of meaningful and accessible data.

Brian quotes a colleague: "Children are often little considered in broad societal or systemic healthcare changes, because they are little people, with little problems, and have little power (there is no lobby for children akin to the AARP), so they receive ‘little’ budgets."

Brian cites a recent paper by Kelly Stuart at the Virginia Health System on the matter. Entitled "You can't get there from here: Misplaced incentives can undermine the goals of health care reform in the NICU setting," it is summarized in this abstract: 

The article discusses the exclusion of babies from the benefits of meaningful use standards. This will undermine the goal of decreasing health disparities in the Affordable Care Act (ACA). Transition of the healthcare system to electronic medical records (EMRs) and the unsuitability of meaningful use standards for the neonatal intensive care unit (NICU) are the reasons hospitals are left without a means of addressing patient needs in Health Information Technology (HIT) when it comes to babies.

Here's an excerpt:

It is difficult to determine why babies were not considered when meaningful use standards were created.  Perhaps the reason resides in the fact that the exemplar HIT model for meaningful use is that used by the Veterans Administration and the VA does not see babies.  Perhaps it is because neonatal care requires different thought processes and benchmarking that time constraints ruled out. In any case, this is a justice issue for a vulnerable group.

Stuart argues, in fact, that babies under 2 years old should be considered a special category with increased incentives rather than no incentives. 

I wish you could read the article for yourself, as it is quite persuasive, but unfortunately it requires a fee or a subscription.

On that point, here's some free political advice to the neonatologists. You have important things to say to the body politic. Put pressure on your journals to make public policy articles like this free and widely available so that your advocates can use them to support your positions. The New England Journal of Medicine does so with no loss of revenue and with a concomitant increase in political influence.

Drowning does not look like drowning (reprise)

Back in 2010, I published a story entitled "Drowning does not look like drowning," based on a note sent to me by Jim Weadick, CEO of Newton Medical Center, in Covington, Ga.  The key phrase:  This article is on what it looks like when someone is drowning. It's not like in the movies.  

It's a good time for a reminder now that summer is here.  Mario Vittone has republished the article in Slate.  Excerpt:

The Instinctive Drowning Response . . . is what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind.

So if a crew member falls overboard and everything looks OK—don’t be too sure. Sometimes the most common indication that someone is drowning is that they don’t look like they’re drowning. They may just look like they are treading water and looking up at the deck. One way to be sure? Ask them, “Are you all right?” If they can answer at all—they probably are. If they return a blank stare, you may have less than 30 seconds to get to them. And parents—children playing in the water make noise. When they get quiet, you get to them and find out why.

No meaningful use help for nursing homes

One of the things I learned from Holly Jarek at Seven Hills Pediatric Center is that pediatric nursing homes are not eligible for federal funding support for electronic health records (i.e, for "meaningful use.")  The problem this raises is that the patient information systems between this kind of nursing homes (and adult ones, too) are therefore not integrated with the hospitals and physicians that serve these patients.  The patients with the severe complex conditions found at Seven Hills are quite likely to need emergency or other treatment at Children's Hospital or other facilities.  Holly pointed out that the lack of a common EHR interfered with management of patient care.

Using the crowdsourcing capability of Twitter, I asked my followers how this exclusion came to pass.  Ashish @ashishkjha Jha quickly answered:  "MU $ not available to nursing homes etc. A financial call when HITECH put together. Not enough $ to go around."

When I responded that this was a shame, he expanded on the thought:  "We wrote a paper about ineligible providers and potential implication for fragmentation. It's a challenge."

Indeed.  Here's a link to the paper. Here's the abstract, with emphasis added:

The US government has dedicated substantial resources to help certain providers, such as short-term acute care hospitals and physicians, adopt and meaningfully use electronic health record (EHR) systems. We used national data to determine adoption rates of EHR systems among all types of inpatient providers that were ineligible for these same federal meaningful-use incentives: long-term acute care hospitals, rehabilitation hospitals, and psychiatric hospitals. Adoption rates for these institutions were dismally low: less than half of the rate among short-term acute care hospitals. Specifically, 12 percent of short-term acute care hospitals have at least a basic EHR system, compared with 6 percent of long-term acute care hospitals, 4 percent of rehabilitation hospitals, and 2 percent of psychiatric hospitals. To advance the creation of a nationwide health information technology infrastructure, federal and state policy makers should consider additional measures, such as adopting health information technology standards and EHR system certification criteria appropriate for these ineligible hospitals; including such hospitals in state health information exchange programs; and establishing low-interest loan programs for the acquisition and use of certified EHR systems by ineligible providers.

Goal Play! is now on Audible.com

My book Goal Play! Leadership Lessons from the Soccer Field is now available as an audiobook on Audible.com.  It will be available on iTunes and Amazon.com within the next few days.  Please check it out and listen to a free sample.

Of course, the actual book is still available on Amazon (in print and Kindle versions) and at Smashwords in almost in any e-book format you might desire:  Apple iPad/iBooks, Nook, Sony Reader, Kobo, and most e-reading apps including Stanza, Aldiko, Adobe Digital Editions.

How a market works

The landscape company I use bills me on a fee-for-service basis.  I get billed for every time they cut the grass. Sometimes, I think they cut it too often.

I guess I could offer to pay them a monthly retainer (global payment) instead, but then they would have an incentive to not cut the grass often enough.  Also, during the dry summer months when the grass doesn't grow, I would be paying them for nothing.

Or I could not have them on contract at all and call them when I need them, but they might not be available.  Then, I would have to spend time shopping around to see who is available at that time.

Or I could buy a lawnmower and cut the grass myself, but then I would have to use time I'd rather spend refereeing soccer games or doing something else.  Plus, I like the idea that I am helping to provide jobs in my community.

Or I could dig up the lawn and plant ground cover instead.

Time running out on a good deal at Tufts

Lisa @lisagualtieri Gualtieri at Tufts University School of Medicine reminds us that the early registration discount for Digital Strategies for Health Communication ends tomorrow.  Here are the details. 

Digital Strategies for Health Communication covers how to develop a digital strategy to drive a health organization’s online presence, specifically the selection, management, and evaluation of web, social media, and mobile technologies. This skills-based course featuring case studies and guest lecturers from organizations such as Massachusetts Medical Society, Consumer Reports, and ABC Health News. The course runs from July 14-19, 2013 on the Tufts University School of Medicine Boston campus. Enroll for early registration discount before June 5, 2013.

Blue Button CoDesign Challenge

Pat @Docweighsin Salber informs us of a crowdsourcing approach to designing medical information systems.  The folks at Health Tech Hatch, who are working with Rebecca Mitchell Coelius and Adam Wong at the Division of Science and Innovation in the Office of the National Coordinator for Health IT, ask:

Blue Button is a symbol for easy, online access to your own health information, including clinical and financial data. What tools and applications do you need to make sense of the data and take care of yourself and your family? Tell us and vote on other ideas through June 11th! Over the summer developers across the country will build the most popular submissions and then in August you will choose the winner.

This is a lovely and innovative idea.  Anyone can participate. As of the moment I am writing this, the most popular idea is:

Please help my wife...

Manage our children's immunizations! As any mother knows managing immunizations for children can be a huge hassle. Not only is it a hassle, but there there are well documented dangers of not getting the proper immunizations at the right time and being over immunized (not to mention the costs on the latter). We have 3 children under 6 and a fourth one on the way. I have literally taken phone calls from my wife crying, frustrated that she had to take all three kids to the doctor's office and wait an hour to get a nurse print the immunization records so that we can take a trip or enroll them in school. All states have an immunization registry that is funded by the CDC. We also have a HealthVault account for all of our kids. Can someone please build a HealthVault app to leverage BlueButton+ to aggregate and allow us to manage our kids immunizations? An added plus would be the ability to easily share (print, email, fax?) the records to the school or other necessary recipient!

Another side of health care

Many months ago, Holly Jarek wrote to me:  "I was wondering if sometime in the future, we might schedule a visit for you to come out and see Seven Hills Pediatric Center. Would love the opportunity to share another side of health care with you."

Well, "sometime" finally happened, and I had a chance to visit this pediatric nursing home in Groton, MA.  This is one of several such facilities across the country, serving an estimated 6000 or so residents who are cognitively under the age of 12 months and are non-ambulatory.  Many require oxygen, feeding tubes, tracheostomies, and other complex medical equipment.  The vast majority are on permanent formula diets.  The 80+ children at Seven Hills receive all necessary medical, nursing, therapy and leisure services.  They also attend a private, special education school, go on field trips and participate in community activities.  Because there is no other place for them to go upon reaching adulthood (age 22), they stay on.  One resident is in his 30s.

Funding for the medical services is provided by Medicaid.  Funding for the school programs is provided under the state's special education laws by the school districts from which the children come.  A small amount of additional funding comes from the state DSS.

An adjacent dental clinic provides dental services for the residents but also other developmentally disabled people in the community.

Eyal Cohen and others have noted, "Increasing prevalence of children with complex and chronic diseases has occurred in the last half century and will likely continue to occur." Why? Well, the good news is that medical advances in neonatal intensive care and trauma care have saved lives of children who previously would have died.  The bad news is that some of those who have been saved end up with the kinds of impairments that lead them to places like Seven Hills.  These patients require care that is much more expensive than others.  Cohen and others note (in a review of Canadian patients), "Although a small proportion of the population, CMC (children with medical complexity) account for a substantial proportion of health care costs."  A recent unpublished presentation about North Carolina noted the same thing, with 5% of children under 18 incurring 54% of the cost for children’s care in Medicaid.

The current political environment for this kind of care is not good.  Let's start with the votes:  48 million Medicare voters versus 0 children voters!  But beyond this, the current focus on Medicaid is on budget cuts.  Where expansion is being considered, it is adult-centric.  Safety net hospitals are seeing phased reductions under the health reform law.

So the prognosis for organizations like Seven Hills that take care of severe cases, as well as others that take care of other children with medical complexity, is an increased demand for their services combined with a disproportionate reduction in state and federal support.  This group thus joins other disenfranchised sectors of the health care community while the government pours money into those sectors with the political power to get what they want when they want it.

One of these three is not like the others

I borrow this old expression from Sesame Street to present a contrast that is indicative of the health care environment in the US, made all the more poignant by the fact that this is occurring in our nation's capital.

This is United Medical Center, a safety net hospital serving one the poorest parts of the District of Columbia.  The Washington Post reports that the District paid $12 million to Huron Healthcare to operate the hospital and make recommendations for its future.

Under its contract, Huron assumed management of United Medical Center in late March. It is undertaking a “strategic review” of the hospital’s operations and is expected to develop a proposal to help turn around the hospital in the coming weeks for the approval of the hospital’s board in July.

(By the way, I provided recommendations pro bono a few months ago.  Remind me to raise my rates!)

That UMC is failing financially is a multifaceted problem, but it basically a result of the structure of compensation provided to safety net hospitals.  The body politic in DC--including the US Congress and the current Administration--has failed to deal with the issue.  The result is a degradation in the quality and availability of service to people in this neighborhood.  As I have said:

The DC government and local constituencies will only solve UMC's problems when the federal government makes the proper commitment to providing the poor people in this part of the District with "a full-service hospital east of the Anacostia River."

Meanwhile, look what's happening a few miles away, as a result of the kind of federal commitment that can send tens of millions of dollars to wasteful clinical endeavors.  This is MedStar Georgetown University Hospital:

This is Sibley Memorial Hospital, affiliated with Johns Hopkins Medicine:

This is a map of their relative locations, about 3 miles apart:

The two hospitals have both just received permission from the District of Columbia to install proton beam radiation therapy machines, at a total cost of $153 million.  The Post notes:

The decision has been closely followed by health experts because critics say it reflects a nationwide medical arms race, as hospitals scramble for dominance by investing millions of dollars in technology that has not been proven to be better than cheaper alternatives for some cancers.

Jenny Gold at NPR reported:

"Neither [Hopkins nor MedStar] should be building," says Dr. Ezekiel Emanuel, a former health care adviser to the Obama administration who is now at the University of Pennsylvania. "We don't have evidence that there's a need for them in terms of medical care. They're simply done to generate profits."

Meanwhile, another facility, the Maryland Proton Treatment Center, is already being built 40 miles away in downtown Baltimore.

The organization that is making this possible is CMS, which has set rates for use of proton beams for "normal" cancer therapy that far exceed their value compared to traditional forms of radiotherapy.

Dr. Emanuel was a key advisor to President Obama on health care issues. He and others in the administration have had years to fix this problem, but they have not.  When I recently asked a high ranking CMS official why they didn't act to change this payment scheme, s/he answered, "I think you know the reason why."  The reason why, obviously, was that political pressure from those who stand to benefit from the medical arms race have enough influence on the federal agencies to protect the status quo.

When we compare the outright waste of tens of millions of dollars on duplicate machines of unproven clinical effectiveness with the human suffering that results from the degradation of places like United Medical Center, we see political corruption of the highest order.  I am not suggesting personal corruption, nor I am suggesting that either political party is solely responsible.  I am suggesting corruption of political processes to protect the strong, big, and well connected at the expense of the poor and less powerful.

Goal Play! goes electronic--in every format

My book Goal Play!, which has been available for some time only on Amazon (in print and Kindle versions), is now available at Smashwords in almost in any e-book format you might desire:  Apple iPad/iBooks, Nook, Sony Reader, Kobo, and most e-reading apps including Stanza, Aldiko, Adobe Digital Editions.  Here's your chance to add it to your digital library.

(My other book, How a Blog held off the Most Powerful Union in America, is also available on Amazon in print and Kindle versions and on Smashwords in all of these e-book formats.)

David Hartzband on Patient-Centered Coordination of Care

Trust Frameworks and Asymptotic Identity Proofing:

A Systems Approach

MIT SDM Systems Thinking Webinar Series

David Hartzband, D.Sc., Lecturer, MIT Engineering Systems Division.

Date: June 3, 2013

Time: Noon – 1pm EDT

Free and open to all

Register

About the Presentation

This webinar is based on Dr. Hartzband's work as PI for a grant entitled “An Identity Ecosystem for Patient-Centered Coordination of Care.”  He will describe how two health information exchanges link with a unique policy-enabled authentication, authorization, and identity proofing system that can gather and utilize identity attributes from disparate sources and use them to provide a very high level of assurance for cyber identities. This systems-based approach can be useful to consider in many other industries.

Dr. Hartzband will discuss several use cases from the grant pilot, as well as the following topics:
• The need for trusted identities in healthcare (and elsewhere)

• The role of identity in online privacy and security

• The design of the NSTIC healthcare project and pilot

• The architecture and function of identity syndication

• A probability model for identity syndication

• What’s next in the development of trusted identities

We invite you to join us!

Sorry, your study is not PC . . . yet.

@JordanRau at @KHNews (Kaiser Health News) has correctly framed the public policy issue raised by a new report:

The idea that uneven Medicare health care spending around the country is due to wasteful practices and overtreatment—a concept that influenced the federal health law -- takes another hit in a study published Tuesday. The paper concludes that health differences around the country explain between 75 percent and 85 percent of the cost variations

“People really are sicker in some parts of the country,” said Dr. Patrick Romano, one of the authors.

That’s a sour assessment for those hoping to wring large savings out of the health care system by making it more efficient. Some, such as President Barack Obama’s former budget director, Peter Orszag, assert that geographic variations in spending could mean that nearly a third of Medicare spending may be unnecessary.

I hold no brief for this study, or for the previous ones by the folks at Dartmouth.  What I view as interesting is the manner in which public policy in the health care arena is or is not whipsawed by the latest study.  What would happen now if a major part of the framework for ACOs, risk-based contracting, and increased concentration of the health care industry is viewed as up for grabs?

Here's what I predict.  That re-evaluation will not happen, at least right away.  The new report will be viewed as politically incorrect, disagreeably contradicting the current views of many parties who now have a vested interest in the new direction of the national health care system.  It's methodology will be critiqued by those benefiting from the new status quo--just as the Dartmouth report was critiqued for many years with those benefiting from the old status quo.  Then, the conclusions will take hold, and policy will shift again.

It takes a while for a pendulum to reach its high point and for momentum to shift, but gravity is not just a good idea:  It's the law.

Subversive brand readjustment at Abercrombie

The e-pages have been full of stories about the statements made by the CEO of Abercrombie, e.g., “Candidly, we go after the cool kids. We go after the attractive all-American kid with a great attitude and a lot of friends. A lot of people don’t belong [in our clothes], and they can’t belong” and “I don’t want our core customers to see people who aren’t as hot as them wearing our clothing.”

He also said that the communication between "hot people" is his primary marketing tactic: “It’s almost everything. That’s why we hire good-looking people in our stores. Because good-looking people attract other good-looking people, and we want to market to cool, good-looking people. We don’t market to anyone other than that,” he said.

Here's a first-person validation of this from a young friend of mine:

The first time I went in to buy a pair of shorts and the woman at the counter asked if I lived around here. Right after I said yes, she asked if I needed a summer job and said I would be "great." I remember her actually making me feel really good! I decided to take it and went back to the store for an "interview" where they asked about my personal style, but I remember feeling very uncomfortable. She took a photo of me to send to the national office, they recruit all of their models from their stores. They told me my title would be "store model" where I would just greet people who came in. I went back another time to buy clothing for the position (over 90 dollars, they didn't have my discount in the system yet) and everyone there told me not to take the job. They kept everyone who was not white in the back room of the store as well. They seemed extremely unhappy. I called and said I wasn't going to take the position and went to a different Abercrombie to return the clothing. As soon as I walked in, an employee followed me around the store to the register and asked me if I lived around here, and then immediately offered me a summer job

It's hard to know what to do to counter this approach and the CEO's view of the world.  After all, if you're not "hot" or "cool," a boycott won't do much good!  One person has creatively taken on a subversive crusade to create a "brand readjustment."  Check out this article. Excerpt:

Greg Karber posted a YouTube video entitled “Abercrombie & Fitch Gets a Brand Readjustment #FitchTheHomeless,” which asks the public to go to their local thrift shops and purchase all of the Abercrombie & Fitch they can possibly grab and distribute the clothes to the homeless.

“Together, we can make Abercrombie & Fitch the world’s number one brand of homeless apparel,” Karber says in the video.