As NICHQ’s resident infographic artist, I felt inspired by Purple Day to create an infographic about epilepsy awareness and education. Please feel free to share it in honor of children with epilepsy and their families everywhere!
More than a decade ago, the Institute of Medicine declared that the purpose of the US healthcare system was to continuously improve the health of the American people. Yet, for a long time the focus of many remained narrowly within the constraints of healthcare—addressing themes such as patient safety, clinical effectiveness and patient centeredness that are critically important but of themselves not likely to change the overall health and well being of the population.
Gradually, and now with increasing force and pace, a movement is building that seeks to recognize the broader influences on health, often summarized as “social determinants of health.” For example, The Robert Wood Johnson Foundation is reframing its strategic focus to emphasize a “culture of health” and the National Quality Forum has several working groups on both measuring population health and moving the nation to health. Hooray!
NICHQ of course has long had a broad focus on health, strongly driven by our work on addressing childhood obesity. In this work we recognized early on that clinical care is an extremely important element AND that addressing childhood obesity required coordination and integration between the clinic and community to change the context and provide effective services. I suspect that addressing the obesity epidemic is part of what has driven not just NICHQ but the broader health and healthcare community to see the need to bridge healthcare and health in a new way.
What Is the System that Produces Health?
Improvement science teaches us to view outcomes—such as health—as the inevitable product of a system, with the implication that achieving improved outcomes requires changing the system itself. A deep understanding of the system and how it functions can enable smarter decisions about selecting high leverage changes in order to improve system performance.
In this case, what is the system that produces the health of a population? How might we describe it and so choose promising points of intervention?
The most common framing that I see is that originally developed by McGinnis and modified by Kindig in creating county health rankings. In this model, the influences on health are broken down into a few simple categories—you might even call them “drivers.” The relative impact of these drivers are then estimated, with healthcare merely 10-20 percent, health behaviors a much higher 30-40 percent, and other factors in between.
All models are simplifications of reality; good models are useful in enabling understanding and driving action. The Kindig model is useful in broadening focus and, presumably, investment from health care to community or, more thoughtfully, assuring that community actions—from highway construction to food pricing—include health considerations if we want to alter societal health.
Yet as a system thinker and a pediatrician inherently oriented to think longitudinally and developmentally, I find the model inadequate. At least in its typical graphic representation, the model fails to emphasize the interaction and interdependence of the factors that when attached to percentages seem independent. Social factors clearly influence the physical environment in which one lives (how many bus depots are adjacent to luxury housing?). Similarly health behaviors—such as healthy eating—are strongly influenced by economic factors and, under ideal conditions, at least marginally influenced by high quality health care.
Envisioning a More Complete Model
So how can we improve the model? I’m early in the process of thinking about this, and thought I’d share my thinking and get some crowd-source reactions and feedback at this early stage.
I initially started to add elements. For example, if we put “personal resilience” in as a driver, we can start to see how supportive relationships can drive better health. If we add a driver for “earlier health status” we can begin to recognize the longitudinal nature of health. Here’s a snapshot of my white board brainstorm:
But, ultimately the linear driver framework seems to be an insufficient illustration of the system to truly help set priorities for action. This type of model doesn’t emphasize the interactions among the drivers, nor does it truly address the importance of timing and trajectory (there’s that developmental thinking again!).
Seeking a Systems Model
System diagrams and system modeling may be a more effective approach to framing the complexity of the influences on health, and especially to incorporate the critical role of development and what system modelers might call lagged effects, i.e., the effect of an intervention at one point in time on outcomes at a much later point in time. System modeling has been applied to community health, but the models I have seen don’t adequately account for the later or long-term effects of interventions at earlier points in time, particularly the protective effects of interventions at critical points in development as well as the cumulative effects over time.
Here’s my first rough attempt at a system diagram for health outcomes, presented for others to comment on and improve:
What I’ve represented as the outcome is “health now.” A key influence of health now is health at an earlier stage, with this earlier stage health influenced by numerous drivers—many of which are not dramatically different than those in the McGinnis/Kindig model. The distinction is the emphasis on the interaction of these drivers and of the critical impact of health at an earlier stage on later health—in either a virtuous or vicious cycle.
Even this graphic model doesn’t adequately emphasize the particular importance of influences on health at particular times—such as infancy and late adolescence/early adulthood. Yet it does start to elevate the importance of interventions to improve health at an early stage in life—interventions both through health care (e.g., for those at great biologic vulnerability such as extreme prematurity) AND through enhancing the economic and social conditions and capabilities of parents and community.
Getting this right isn’t just an academic exercise. Without attention to time, policy makers may focus all of their efforts on behaviors and conditions at a late (adult) stage and fail to achieve the desired health impact that earlier childhood interventions might have. Similarly, without attention to the interaction among these factors—such as the impact of environmental exposures on epigenetics or the potential for healthcare to influence health behaviors—the potential benefits of some interventions or potential harms of exposures will be vastly underestimated.
I look forward to your help in improving the model and truly focusing all of our efforts on improving health.
Originally posted July 2013.
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.
Originally Posted December 2013.
My husband and I spend a lot of time at The Home Depot. Ever since we started restoring our new “old” house, we’re on a first-name basis with everyone who wears an orange apron. When a customer asked me recently where she could find plastic washers and I knew the exact aisle to which to send her, I began thinking maybe it was time to take a long vacation.
For anyone who has gotten lost in Home Depot or any big box home improvement store, you’ve probably found yourself in the building materials section. That’s where they sell “the big stuff”: roofing, gutters, drywall, lumber, composite decking, joint compound…all the things typically appreciated only by professionals. It’s not the kind of place you would tend to find a computer geek like me. But it’s my favorite place in the store. Someone get me a big cart because I’m tackling the world today!
Why do I do this to myself? My father would tell you it’s because I am his daughter. My father is the kind of person who makes something from nothing. He had never built a house before, but he decided to build the family home I grew up in, including all the plumbing and electricity. He turned a 1932 Ford into a flatbed truck with a plow. (This may in part explain why I was never late to school on a snow day. Thanks, Dad!)
It is my father’s fearlessness in the face of the unknown that has made me believe throughout my life that I can do anything if I just try it. The worst thing that can happen is that the results of my first few attempts might not turn out the way I had hoped or expected. The first time I plastered a wall, for example, it looked dreadful. The second wall was marginally better. But by the third wall, I started seriously considering moonlighting as a plasterer.
Quality improvement works the same way. We must be fearless when we are not getting the results we had hoped for or expected. The change needed is often big, daunting and expensive. I’ve learned that the trick is to not think about the odds. Improvers need to remove the word “impossible” from our vocabulary. If we find ourselves saying, “I can’t make providers use this new process,” or “I don’t have the resources to build a new data system,” we need to ask what we are most afraid of. Fear of not being successful tends to fulfill that prophecy. If we just try something without fear, given time and practice, we can achieve the “impossible.”
Nelson Mandela once said he “learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” When I stepped into my grandmother’s 1860 colonial house, I was afraid that I could not do all the things that needed to be done to make it a home. But I made myself believe that I could fix plaster, sister joists and install a new shower so I could make my dream of being the fourth generation to live in that house a reality. My parents and husband have embraced that same spirit and with every stroke of the putty knife, we are getting closer to success.
I try to bring this fearless philosophy to my work each day as a technologist and leader at NICHQ. I am always trying new things to ensure our customers can be confident in beating whatever odds they face when making improvements in their own organizations. Most recently, my team has been testing new strategies to improve the performance of our online data service, the Improvement Lab. We also initiated a new private intranet platform that is blossoming into a space and transforming communication across our organization.
My father and I tackled drywall this past weekend. Next, I’m thinking it’s time I did something about those leaky windows. So back we go to The Home Depot for some shiny new toys—now if I could just convince them to give me the “Friends and Family” discount!
Contributed by Rachel Sachs Steele, MEd
COO and Vice President of Business Development.
Originally posted November 2013.
I love Halloween. For one day every year, I get to try something new, look totally silly, celebrate fear and play with possibilities, all without the usual external or internal constraints. Can you imagine what life would be like if we had that freedom all the time?
Wouldn’t it be great if we were able to take risks without fear? If we had the opportunity to look at what we are doing, evaluate our actions openly and try new ideas until we find the best outcome? And how about having a whole community of people taking risks, embracing crazy ideas and experimenting with new approaches together?
Guess what? No trick here — this “imaginary” world exists.
While wearing sparkly wings and a silly hat this year with my 3-and-a-half-year-old niece, I noticed many parallels between Halloween and collaborative improvement work. Being part of an improvement effort is a humbling experience. We walk out into the world knowing we’re going to look silly, but trust we won’t be judged — because others will look silly too. And then there is the scary stuff: when we push ourselves and others to improve, we expose errors and inefficiencies, identify root causes, and test new ways of operating.
And guess what happens when we test new ideas? We are going to fail. That’s how we learn.
One may argue that Halloween is a low-cost game, but when taking risks in a professional setting, mistakes are not typically encouraged and change can be difficult. And, as if exposing ourselves to failure isn’t scary enough, when we embrace the idea of trying and failing for the sake of improvement, we must also confront the fears and limitations of the larger systems in which we work. Let’s not forget that improvement will prove, without a doubt, that we don’t know everything and — yikes — we may need to let go of something we once thought essential to make room for the new and better.
These are scary concepts for many of us, but the beauty of improvement work is that we get to encourage and celebrate “failure” as an important part of learning. Improvement work requires us to embrace our fears and understand that fears represent risks and risks represent opportunity. And because we do improvement work in collaborative environments with others who are also trying, risking and stumbling, we’re not alone. Over and over again in NICHQ’s work, we see amazing examples of project teams taking risks that result in tremendous leaps forward.
Sure, confronting failure is daunting, but it’s also exhilarating to see opportunities and find better ways of doing things. It’s our obligation as leaders and as people to find and release things that no longer get us the results we are seeking and make way for better. But let’s face it, things are going to change regardless of our own level of comfort and no matter how hard we try, we won’t ever be perfect, can’t predict the future and can’t know what we don’t know. So why not have some fun with it? Join us in improvement work: jump in, try something outside the norm, and experience, in a way, the freedom of Halloween anytime. What we learn in the failing can surprise us — and ultimately pave the way to meaningful and lasting improvements.
Originally Posted October 2012.
I admit it. I am a total data geek. I’ve never met a number I didn’t like, an algorithm I didn’t want to dissect, or a math problem I didn’t want to solve. As the grand-daughter of a mathematician, my love for all things data is no surprise. When other kids played outside, I amused myself by calculating the number of jelly beans in a glass jar or estimating the circumference of the apple I ate for lunch. I even took Calculus over the summer in high school…just for fun.
My colleagues (and occasionally my friends and family) often ask me why numbers are so important to me, mostly out of concern that I’m turning into a computer. In response, I always find myself quoting 16th century British naturalist and slightly irreverent scientist Sir William Turner: “You may have heard the world is made up of atoms and molecules, but it’s really made up of stories.” It is not the numbers that I find so interesting or important, but the story behind those numbers that inform how we think about real-world problems, what causes those problems, and how we can apply evidence-based strategies to solve those problems.
As leaders in quality improvement (QI), NICHQ asks teams participating in our projects to collect data to track their improvements on the complex problems that face children and their families in our health and healthcare systems. Yet for many new participants, data collection feels daunting. It takes time and resources, which are often precious commodities in the systems in which they work. How do we get beyond these barriers? Here are some ideas from this self-proclaimed data geek to inform our thinking around data collection:
- Think of data collection as its own change strategy. We often suggest that teams work to improve their data collection and monitoring process as part of their work in a QI project. Improving your data infrastructure will empower everyone in your system to examine data and apply it to shift the system toward positive change for children and families.
- Get your own data geek. Add someone to your team who enjoys the process of data collection and the evidence it produces. Teams with a data manager responsible for measuring change during process improvement are more successful in affecting change than teams without a data manager.
- Demonstrate “face validity.” Does your team have a hard time believing the measures you are tracking actually reflect what is going on in the field? Demonstrate that the measures you are using to track progress actually measure what they are supposed to measure. In research, this is similar to a concept we call “face validity.” If it feels right, it is right.
- Pick your own measures. If you are doing something in the field that isn’t captured by your measurement strategy, create your own measure! Talk with your team leader or your project’s Improvement Advisor about creating an optional measure to track progress aligned with your testing.
- Remember that data are people too. It is so important to remember that data represents the people for whom we care and want to care for better. I have a big sign up in my office that says ”I am n = 1,” which basically means that the individual experience is the basis for measurement. Every data point collected is an encounter, a visit, a care process, a person, or a family that your quality improvement process touches. Remember your ‘n’ is not a number.
As NICHQ’s Associate Director of our new Department of Applied Research and Evaluation, my lifelong fascination with data translates into an everyday exercise of telling stories about improvement through data. I am always in awe of the amazing strategies that teams in the field apply to collect and use data to inform their journey toward improved systems of care for children and families. You don’t have to be a data geek to appreciate that just a few data points can change someone’s world.
And now for the NICHQ math puzzle of the week! If Train A leaves Boston at 8:30am at 16 miles per hour and Train B leaves Chicago at 9:00am at 18 miles per hour, at what time will they meet?
Contributed by Shikha Anand
Director of Strategic Alliances and Initiatives and Obesity Program Director. Originally posted March 2012.
“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.