Tag Archives: Medical Home

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.

Beyond Bullying

Contributed by Tom Dahlborg
Vice President for Strategy and Project Director.
Originally posted January 2013.

Tom Dahlborg
Tom Dahlborg

In the online December issue of Pediatrics, researchers from the Rudd Center for Food Policy and Obesity at Yale University recently shared outcomes from their study, “Youth Seeking Weight Loss Treatment Report Bullying by Those They Trust.”

The study design included a survey of adolescents to better understand bullying behaviors, including the location, frequency, duration and types of bullies involved.

The study found that:

  • 64 percent of those surveyed reported getting bullied at school (with the risk of bullying increasing relative to the child’s body weight).
  • Most of the kids suffered bullying for at least one year (78 percent) while over a third (36 percent) had been dealing with bullying for five years.
  • The most common bullies involved were the child’s peers (92 percent) and even those kids that they considered friends (70 percent).

But one of the most disturbing findings to me is the fact that these children also report being bullied by physical education teachers and sports coaches (42%), parents (37%) and classroom teachers (27%).

I should not be so surprised. I have personally encounted an incident of an adult bullying a child I know well, but until I read this study, I assumed that event was an aberration and that bullying of this kind was nowhere near as prevalent as highlighted in this study.

About 12 years ago we lived in a picturesque community on the coast in what seemed the ideal neighborhood.

In this neighborhood lived a five-year-old boy who was overweight. He loved to run, play and have fun, and one day he was outside playing with some of the other neighborhood children when they all decided to go inside a neighbor’s home. As they walked up to the door the mother of one of the boys greeted them and let them in one by one until she saw this child and yelled, “You are too big to come in and play. Go home!”

This would be devastating to anyone, never mind a five-year-old child. The tears and the pain he felt were heartbreaking. As was the pain felt by his parents. And the impact of this bullying along with many other examples this child endured in this neighborhood lasts to this day.

Now contrast this experience with one I witnessed repeatedly at a dance class for young children in the same community at around the same time. The dance instructor truly connected with each of the children in her class. She set expectations, she encouraged, she shared compassion and empathy for those challenged to perform and honored these children for their individual gifts, regardless of their body types.

My daughter was one of the lucky children in that class. She began dancing at a very young age and developed a special relationship with this teacher, a bond and a trust which she cherishes to this day. Years later, now as a college freshman, she has decided to continue to dance as part of a healthy lifestyle. She has taken it upon herself to research schools of dance and to fund the program of her choice.

My daughter loves exercising (with dance being at the top of the list) and maintains a healthy body image, self-esteem level and perspective on life, thanks in large part to the influence of this teacher from years ago.

Quite a dichotomy between the neighbor’s approach with the five-year-old boy and the dance instructor’s approach to her students…and both will have lasting influence on these children.

Now that I have the opportunity to work for a quality improvement organization with a vision of ensuring each child achieves his or her optimal health, and to process this information through the lens of my own experiences (personal and professional), my heart still breaks for those children harmed by bullying…AND I see great opportunities for improvement:

  • To meet children where they are while also educating adults as to the impact we can all have on children (both positive and negative).
  • To bring this perspective to healthcare and expand current thinking around patient-centeredness (child-centeredness) and the patient-centered medical home.
  • To evolve the medical home concept to a neighborhood perspective where patients and families, neighbors and friends, and coaches and teachers are all engaged to learn and grow and help the children of a community achieve their optimal health (by addressing bullying at all levels as well as many other barriers to children’s safety and optimal health).
  • To ensure that each child is recognized as unique, and receives appropriate interventions and support that will best position the child to achieve his or her optimal health.

NICHQ has helped lead the patient-centered medical home evolution since the 1990s and continues to do so. Currently, the US healthcare system is struggling with optimizing behavioral health integration into the medical home. We must continue our improvement efforts and to evolve and expand our thinking in this arena even more.

These are invigorating times to be working in healthcare quality improvement with a focus on children. We have a great opportunity to change communities for the better through evolved medical home concepts and I am excited to be part of this ongoing work as NICHQ continues to lead the way.

As a healthcare leader, a coach, a friend, a husband and a father, I have seen the positive impact we can have on children from both a systemic perspective and on a one-to-one basis. At NICHQ I am blessed with an opportunity to do both.

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.