Tag Archives: System Change

Removing the Burden of Care Coordination

Originally posted July 2013.

Cindy Hutter
Cindy Hutter

The Sunday after Thanksgiving 2005, I woke up in the middle of the night with sharp pains in my stomach. Growing up, the universal remedy for nearly everything in our household was Pepto-Bismol. At 26, that still stuck with me. I took a slug from the glorious pink bottle that maintained a reserved spot in the refrigerator door rack and went back to bed.

Within 20 minutes I was up again, hunched over in pain and nudging my then-fiancée, Steve, to wake up. I tend to have a high tolerance for pain. I’ve finished a half marathon with a nagging pain in my knee that turned out to be several sprained ligaments. When I told Steve I needed to go to the hospital, we both knew something was amiss.

My first thought was my appendix had burst. I was wrong, very wrong. I had a cyst the size of a softball on my left ovary and it had ruptured. I had emergency surgery to remove the cyst. A week later, when the pathology came back, I got my diagnosis. I had ovarian cancer.

Ovarian cancer is known as the silent killer, mainly because there are no good tests to detect the disease and symptoms typically don’t present themselves until the cancer has spread. The cancer is most commonly diagnosed in elderly women for whom life expectancy after diagnosis is not very good. Since it is rare to get the disease at a young age, protocols for long-term, post treatment care plans are nonexistent.

After a second surgery to remove my left ovary and all signs of the cancer, I met with my surgeon a few times for follow-up and then she was off to save others with her scalpel, as she should be. Now what? I wasn’t sure how and by whom my follow-up care would be managed.

Typically very healthy, I didn’t see my primary care physician frequently enough to develop a relationship. And since I had been to the gynecologist for a checkup just weeks prior to the cyst rupturing, I had little confidence in her ability to oversee my long-term care. I felt like a foreigner alone in an unknown land and the only things in my suitcase were the names of a few high-risk gynecologists and a copy of my medical record.

This experience, plus now my work at NICHQ, has caused me to think about the issues of patient advocacy, medical care transition and coordination in a new light. Patients (and their families) are too often burdened with the responsibility of being their own advocates. This is especially true for patients with special healthcare needs and when young adults transition out of pediatric care, both of which were true in my case. I had never heard of the concept of a medical home before coming to NICHQ, but I’ve now seen what is possible in a patient-focused system where primary care physicians and specialists coordinate to deliver high-quality healthcare. In situations like mine, where there are no established protocols to follow, the need for a medical home is most critical—and paradoxically, most lacking.

Since joining NICHQ last year, I’ve seen our various project teams tackle these intertwined issues. In our medical home project, teams of pediatric offices have been testing and now implementing best practices for transitioning patients to adult practices. This is helping to close the gap in care many young adults experience when they age out of a pediatric practice, which can be particularly problematic for patients with health issues like autism, sickle cell disease and others. In another project, NICHQ and its partners are piloting guidelines for bridging childhood and adult care for sickle cell patients by teaching adolescents to be advocates for their own care coordination in the absence of (or in addition to) a medical home. And NICHQ’s autism project is addressing how to coordinate follow-up care with community physicians to remove some of the burden from overwhelmed specialty clinics. Across these and other projects, teams are introducing patient navigator programs and additional innovations to provide assistance to those who need help managing the healthcare system and to better support a medical home model.

I find hope in this work. By transforming into medical homes, practices are improving the ways care providers interact to provide holistic care to patients. As a result, a child born today with sickle cell disease is more likely to have a smooth transition to adult care and the family of a child diagnosed with autism will more easily find a primary care doctor who is versed in relevant treatment guidelines. And hopefully, as this work continues to spread, people with any type of special healthcare need will more easily find a way to a long-term care plan and a supportive team.

Fortunately, my story has a happy ending. After a few failed attempts, I found a gynecologist that I love and trust. We’re managing my care together, making up the rulebook as we go. We make sure I have checkups every six months and follow a treatment regimen. And when I’m ready, we’ll start the discussion of considering some proactive surgery to limit my odds of recurrence. One thing, however, that we no longer talk about is my fertility concerns. Steve and I are expecting our first child in October.

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An Improvement Wake-Up Call

Contributed by Jonathan Small
NICHQ Senior Director of Communications.
Originally posted February 2012.

Jonathan Small
Jonathan Small

It never ceases to amaze me what I learn from my children, especially the youngest ones – my eight-year-old twin daughters. I’ve been working in the quality improvement field for longer than they’ve been alive. But now they’re the ones teaching me about it!

Until two weeks ago, every weekday morning brought the recurring challenge of trying to get these two seemingly responsible third-graders to school on time. How complicated could it be? We set their alarm clock so they would have a whole hour to get dressed, eat breakfast, prepare lunches, wash up, and get out the door and down the block to school. It should have been enough time. But far too often, they arrived late. And the last few rushed minutes of getting them out the door were among the most irritating and stressful times in our relationships.

Their latest progress reports listed 18 “tardies” for each of them – and always just an agonizing two or three minutes late. My wife and I pride ourselves on being prompt. Surely we could get our children to shave a couple of minutes off their morning routine. But we just couldn’t push any harder.

Every system is perfectly designed to get exactly the results it gets, say the improvement experts.

So, we decided to change the system. We did the only logical thing we could think of – we set the alarm clock for fifteen minutes earlier. We reasoned that the extra time would be more than enough to make up for the difference. I had no doubt that this was the right solution. But no! The girls simply lingered in bed longer and were more irritable and less cooperative. Still arriving late. Still stressful. Still “tardy” noted on the progress reports. Our first Plan-Do-Study-Act cycle was a failure – and we had all lost an extra fifteen minutes of sleep to boot.

Now, I’ve been working in quality improvement for more than a decade, and I’ve been a parent even longer. I was determined to find a way to improve our performance here.

Then my wife had a brilliant idea – ask the girls to solve the problem themselves. I began thinking about the quality management principle that the frontline workers (not management) are in the best position to identify possible causes of a problem and find a solution. My wife had empowered our “frontline workers.”

Their recommended solution, however, was preposterous, so counterintuitive that it was almost laughable. The girls suggested that instead of setting their alarm clock earlier by fifteen minutes, they would set it fifteen minutes later. Ridiculous. That would leave them only 45 minutes to get to school. If they couldn’t get there in an hour, how could they possibly think they could get there in 45 minutes?

They reasoned that if the alarm clock went off later instead of earlier, they would pop out of bed and kick it into gear more rapidly and efficiently. Ha. Just an excuse for sleeping 15 minutes longer and getting to school 15 minutes later.

But we decided to try it – just for one day. It was a small test of change with no risk – after all, what was one more “tardy” at this point?

And what do you know: they made it to school on time. So we tried it again the next day. Same result. Since we made that change two weeks ago, the girls have not been late to school even once! No more “tardies.” They are less irritable (probably due, in part, to the extra sleep) and more in control. So far, we are holding the gains.

So, what did my eight-year-old children teach me about quality improvement?

My wife and I never would have thought of this solution ourselves. It was completely counterintuitive to us. Yet, it was as clear as a new day to the people who mattered most in this process. And when they were empowered to solve the problem, they came up with a solution that worked – for them. And now, they own and care about the results more than ever, because it was their idea and they have a stake in seeing that it’s successful – if for no other reason than it allows them to stay in bed an extra fifteen minutes each morning.

We learned that sometimes the best thing a parent (manager) can do is get out of the way and let the child (worker) solve the problem.

Next on the agenda: let them figure out how to keep their room clean. Believe it or not, that’s working too!

When Did Breastfeeding Become a Choice?

Contributed by Jennifer Ustianov, RN, BSN, IBCLC
Project Director and Perinatal Content Lead.
Originally posted August 2013.

Jennifer Ustianov
Jennifer Ustianov

Years ago, a moment was forever etched in my memory. As a young student nurse, I watched as a new mother wiped aside her tears of happiness and relief in those first few precious seconds after the birth of her first child, gathered her inner strength, and then quickly and lovingly moved her child to her breast. It was natural. It was beautiful. It was timeless. I knew much less then than I know now. But I knew one thing for sure in that moment—I knew when my time came, I would breastfeed.

When does the decision to breastfeed first form in the consciousness of a young woman’s mind? What influences that decision? Is this decision made prior to becoming pregnant, during the first months of a pregnancy, after giving birth? Or is it made as we grow and absorb everything that influences us in our day-to-day lives?

As a maternal child nurse who has practiced for over 30 years, I have come to appreciate the challenges that families face and the many conflicting messages and demands on their time. We live in a modern world with modern world pressures and modern world technologies. I get it! The decision to breastfeed (or not) is complex these days. And it carries with it burdensome social stigmas and judgment. Expecting mothers can spend hours reading about, discussing and contemplating which method of feeding a newborn is best for child, mother, father, family and lifestyle.

In just a few decades, we have seen a notable shift in our cultural perceptions about breastfeeding. What was once the only way is now one of the options. Our choices have evolved over years of social influences that have encouraged and challenged us to consider alternative approaches.

These choices are now real and viable for individuals. But at the societal level, these individual choices are contributing to poorer long term outcomes for our next generation. We now have strong evidence to prove what was never a question for our great and wonderful grandmothers. Breast milk is our most perfect food, and it is almost always best from a health perspective.

I know the tides are beginning to turn. Recent reports show breastfeeding rates are increasing in the US. The journey back to a more supportive breastfeeding culture has begun in this country. But I wonder whether there is more we can do to accelerate this process, so that from this generation forward there is no question and no need to choose.

I believe two elements will drive this change:  influence and knowledge. Influence is the door; knowledge is the key.

As health professionals, our power to influence is clear. We can change attitudes and perceptions one person at a time and we can influence practices and systems to make the healthy choice the easy choice. It is our duty to question practice, change the status quo and improve the outcomes of an entire generation.

But influence is adrift without knowledge. When a mother and father truly understand the health benefits of breastfeeding, or the functional need for skin-to-skin time, or the amazing miracle of a baby’s self latch, they get it! Once health professionals witness and re-learn the power of the uninterrupted stages of newborn behavior in the first minutes and hours, the amazing and inherent responses of a mother’s body, the magic of the quiet skin-to-skin responses between a mother and her newborn as the infant searches and finds his mother breast unaided, they get it! They remember, re-engage and renew a commitment to participate in nurturing the next generation of healthy, happy children, parents and families.

I dream of the day when there will be no need to improve the breastfeeding rate in our country. Until then, I challenge us all to share our influence and knowledge about breastfeeding with one person, one mother, one teenager or one family. Together, we can restore breastfeeding to its proper place in ours and any society.

Happy Breastfeeding (this) Month and always.

What I Learned about Physician Autonomy at the ATM Machine

Contributed by Shikha Anand
Director of Strategic Alliances and Initiatives and Obesity Program Director.
Originally posted March 2012.

Shikha Anand
Shikha Anand

“Every system is perfectly designed to get the results it gets.” This is a common adage among improvement experts. I heard this phrase for the first time about a year ago, when I was somewhat new to NICHQ. While I considered myself a systems thinker, this only partly resonated with my view of my clinical practice. Like many other primary care providers, I was frustrated with the systems that support my practice, but still believed that I myself was completely responsible for – and in control of – the results of my work with patients.

A few weeks into my work at NICHQ, I went to the Automatic Teller Machine (ATM) at my local bank. I withdrew money, got my card and went on my way. As I walked away, I recalled that in younger years, I very often rushed away from an ATM having left my card in the machine. That hadn’t happened to me in a long time and I wondered why. I am busier now than ever before, and as my mom always reminds me, haste makes waste. So why had I not lost a card in years? As I reflected, I realized that the reason is that the ATM now makes me take my card before giving me my cash. And I would never leave without my cash. The system is designed to prevent this human error, and so I’ve now managed to keep a single ATM card for almost 5 years.

At that moment it dawned on me that my decisions, both inside and outside of clinic, are as much driven by the system that supports me as they are by my personal behavior.

As a medical professional, I have been trained to take pride in autonomy and the art of medicine. Like my peers, I distill large amounts of data and use it to better the lives of others. I use cultural context and health behavior change techniques to help families improve their health. The results I have achieved with underserved families have allowed me to believe that by changing my behavior, as an individual provider, I can change the care I deliver. But the well-worn ATM card in my wallet challenged me to think otherwise. Perhaps the system played a bigger role in my behavior than I had previously thought. While I knew this to be true from my quality improvement work, it remained in direct conflict with my medical school teachings – that, as a physician, I am the primary driver of the care I deliver.

Similarly, we physicians blame ourselves for our mistakes because we feel that we own the care of our patients. As a pediatrician, I order lots of vaccines. Occasionally, I forget to order one. When this happens, I tend to lose sleep. I believe that I own the missed vaccine and had I slept better/ read more/ studied harder in medical school, this would not have happened. What I often neglect to take into account in those moments is the role the system played in the process. In one example, the patient that I was attempting to see in a 15 minute interval was a 13 year old who had immigrated from Haiti two weeks prior after witnessing the unwitnessable and had more physical, mental, oral, and social health needs that could possibly be addressed in the time we had together, even IF we spoke the same language.

But the goal here is not to lament about the system that supports primary care. It is to aspire to a way forward that supports individual autonomy, while preventing human error – say, on a bad day for scheduling or sleep or health reasons – from impacting the lives of patients.

Call me naïve, but I think the team-based care endorsed in the medical home model may be the way forward. Before I came to NICHQ, I led a pediatric department that was undergoing medical home transformation. The change was difficult, as change often is, especially change that impacts every facet of the way we do business as pediatricians. However, by asking the staff we worked with every day to play critical roles in data gathering, decision-making, and double-checking, we as providers were able to preserve our autonomy and also have a safety net for the days in which our processes were challenged by the constraints on the system or by our lives outside of medicine.

Over the past year, I have been privileged to bring this experience to my role as the Project Director for NICHQ’s current medical home learning collaborative. I have been helping practices transform their systems to engage their care teams and provide evidence-based care that supports patient and provider autonomy while reducing harm.

In this system, providers’ feelings of isolation as solely responsible for patients is replaced by the knowledge that we are part of a functioning team that is supported by a larger system. Now that is a system that is designed to achieve results.