Time to Pause, Celebrate, and Keep Pushing Ahead

Shikha Anand
Shikha Anand

If you’ve read anything about obesity in the lay press over the past week, you already know that there has been a decline in the prevalence of obesity in American preschoolers. The CDC’s latest National Health and Nutrition Examination Survey (NHANES) data, published in the Feb. 26 issue of the Journal of the American Medical Association, show a significant decline in obesity among children aged 2 to 5 years. Obesity prevalence for this age group went from nearly 14 percent in 2003-2004 to just over 8 percent in 2011-2012. This information has been rippling throughout the press this week, with headlines like “U.S. Childhood Obesity Rates Fall 40% in Decade.”

For me, this news is both exhilarating and anxiety provoking. On one hand I have been working throughout that period alongside countless others to achieve a population decrease in body mass index (BMI) and the news that the day may have finally come for one segment of the pediatric population is incredibly encouraging. On the other hand, the rate is still 8.1 percent, as compared to 4.1 percent in the 1971-1974 NHANES cohort, and celebrating too early could distract from the fact that there is so much more work to be done, especially for our most vulnerable children.

The first question that crossed my mind when the news first landed in my inbox is whether the tide has really turned. Experts agree that the sampling methodologies in NHANES are robust and the data are valid. The pressing questions are (a) whether we are really seeing a trend and (b) whether that trend applies to the most vulnerable children.

There are two ways in which I think about data like this.  The first is with a gut check—does this jive with what I see in my Community Health Center patients?  Although I am not sure that my observation techniques are sensitive enough to see a change from 12 percent in the last cohort to 8 percent in this one, it does seem like recent changes in WIC, SNAP and childcare settings, among others, have made families in my clinic more aware of the impact of healthy eating and active living on the weight and health of their children. And when I saw an obese 2-year-old child this week, I actually thought to myself that I had not seen an obese preschooler in at least a few clinic sessions—certainly a change from five years ago. So is it possible that the tide has turned for preschoolers based on my clinical experience with an underserved urban population? I think so.

But I would be hard pressed to claim that my clinical experience is sufficient to validate public health trends. So I did what improvement junkies do. I went back to the numbers.  The most recent data stratified by race and ethnicity has not yet been made available so I was only able to look for a trend among all preschoolers. I plotted the NHANES data from 1999 to 2012 using CDC data to determine if there really is a trend, creating a graph of obesity prevalence over time, what is known in quality improvement as a run chart.

shikhaA run chart is designed for the early detection signals of improvement over time through recognition of non-random patterns in the data. The first possible pattern is a “shift,” defined as six or more successive points that are all above or below the median, which in this case is 10.6 percent. If our recent changes in policy and practice had caused a shift beginning in 2005-2006, we would see that the next six points fall below the median. But in fact, the four points from the 2005 cohort to the 2011 cohort alternate between being above and below the median, indicating we don’t have enough data to see a shift and that we don’t appear to be on our way to one just yet. We can also look for a “trend,” defined as five or more consecutive points that are either ascending or descending. Similar to the case of the shift, we neither have enough data points, nor do we have indication that we are on our way to a trend. So despite the change in prevalence, it is challenging to use the data to either establish a new, lower baseline prevalence or to attribute the decrease to the changes we have made to the environments of preschoolers.

So where does that leave me? Trend or no trend, this news means thousands and thousands fewer preschoolers are obese in 2011-2012 vs. 2003-2004 and this fact will have an enormous impact on our health resources and outcomes as they mature. And these data give us hope that sustainable improvement could be just around the corner. In any case, we must continue to invest heavily in activities and policies that promote healthy weight to create a change in prevalence that will persist over time. If nothing else, this is a moment to pause, applaud all of the wonderful changes we have made to date, and energize ourselves for the long road ahead—to the day when we have reversed the trend for ALL Americans, regardless of age, race, or class.

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Far From Gold Medal Performance

JS Profile
Jonathan Small

The Olympics were a source of great pride and entertainment for millions of people around the world. I was personally glued to the TV for two weeks and was filled with admiration and respect for these impressive athletes. I frequently found myself thinking about all the hard work and sacrifices needed for them to reach the pinnacle of their sport. I was inspired.

And then the director cut to commercial and I had the displeasure of seeing this ad from Cadillac. In it, actor Neal McDonough glorifies the value of hard work while berating the more leisurely lifestyle of other countries:

Other countries, they work. They stroll home. They stop by the café. They take August off. Off. Why aren’t you like that? Why aren’t we like that? Because we’re crazy-driven, hard-working believers, that’s why.

Then as he revs up his spanking new electric Caddy in the driveway of his ultra luxury home, he ponders the acquisition of material goods and posits they are “the upside of only taking two weeks off in August, n’est-ce pas?”

OK, fine. But what’s the downside? What price does our society pay for discouraging leisure time and mental health days? How much social capital do we lose when we don’t stop by the café?  How many families have dissolved under the pressure of our cultural norms? How many children lack the support systems necessary to achieve their optimal health? And don’t even get me started about maternity leave and childcare benefits.

The US has higher rates of infant mortality and childhood obesity than most other industrialized nations and lags behind in breastfeeding rates as well. These statistics are nothing to brag about. When viewed through a disparities lens, they are even more troubling. For example, the risk of infant death for babies born to non-Hispanic black women is more than two times greater than the risk of infant death for non-Hispanic white women. That’s horrific and embarrassing.

Maybe these “other countries” have something figured out about life balance, n’est-ce pas?

Certainly there is reason for optimism. Recent reports show obesity rates coming down and breastfeeding rates on the rise.  Infant mortality rates are also moving in the right direction and we are confident national initiatives will continue to drive them down.

But we have a long way to go before we get a gold medal in child health outcomes. I suggest we begin in a humble place – with the recognition that, while we may have much to teach other countries, we also have a lot to learn. Of course, this approach would not be very effective for selling cars.

Systems Level Healthcare Improvement Starts with Individual Relationships

Tom Dahlborg
Tom Dahlborg

Recently, I was invited to a meeting of experts to discuss how best to improve patient and family engagement in healthcare at a system level.

As I walked in to the meeting room, I was pleased to see I was slated to sit next to the meeting co-chair, who I had met previously and wanted to get to know even better. As I walked out to stow my luggage, one of the meeting coordinators approached me and let me know that they were moving me because another individual required access to a plug (which happened to be right behind the seat I was initially assigned to).  Oh well I thought … I will simply connect with the co-chair later in the day.

Interesting how fate works.

Shortly thereafter I realized I would be sitting next to a brilliant patient advocate, who also happens to have a chronic degenerative neurological disease. (I will refer to him as Neal.) And throughout the day, Neal showed all of the following symptoms of the disease:

  • Tremors
  • Bradykinesia
  • Rigid muscles
  • Impaired posture and balance
  • Loss of automatic movements
  • Speech challenges

As the meeting began, I became aware of Neal’s breakfast. How he appeared to struggle with his fruit. How the juice cup in his hand flailed precariously close to being dumped on him, on me, and/or on the table. And I realized I had no idea how to help. I had no idea whether Neal wanted help. Would I offend him by offering help? What was Neal’s preference?

As the day went on, Neal confided in me that he was getting tired and I noted his symptoms worsening. He stood up abruptly and his chair, which was on wheels, flew backward so I grabbed it and held it for him. I saw him stumble and thought he would fall so I reached out and held his arm.  Neal brought out a pill container and I thought he was having some difficulty extracting his pills, but decided to hold off at first on offering assistance. Again, I wasn’t sure what he would want and whether he was finding my persistent questioning, e.g., “Can I help you?” “How can I assist?” “Can I get that for you?” bothersome. He retrieved his pills on his own. He then began to lean toward me and I asked again “can I help you,” but received no answer.

A bit later Neal handed me a can of soda and asked me to open it for him, which I was happy to do. And yet as I did so I noticed he also had a cup of ice and based on what I was witnessing I was thinking there was no way he would be able to pour the drink into his cup without spilling. And as I was about to ask him if he wanted me to do it (feeling more comfortable after a number of hours together), Neal leaned over to me and asked me to do so for him.

It’s interesting what thoughts go through your mind during these times.

Feeling that at any moment I could be wearing Neal’s drink, I made a pact with myself that if it does happen I will not show any manifestation of being startled, I will not immediately get up and go clean my suit, but rather I will take it in stride and ensure that I do not cause any sort of scene which would adversely impact Neal. Or, in other words, I will do my best to treat Neal how I would want to be treated in lieu of not truly knowing Neal and his preferences.

At the end of a long day I noticed Neal circling me. He came near and then circled away. He came near and then stumbled (and I supported him) and then circled away again. He then stopped nearby and we made eye contact and he simply said, “Tom, I want to shake your hand,” which we did and I responded, “Neal, it was so great to meet you.”

During a long commute home I continued to process these events.

I was blessed to be sitting with my new colleague. I was fortunate to be further reminded throughout the day of how important it is to develop relationships, to develop trust, to share openly and honestly, and to understand one another’s whole story, preferences, goals, desires, and so much more … and especially so in healthcare. I learned that the more I got to know Neal and understand his preferences the better I felt and the better I was able to respond accordingly and meet his needs more effectively.

Want to improve the healthcare system from a systems perspective?

Develop systems which allow for time, continuity, relationship, trust, authentic sharing, the telling and hearing of the patient’s whole story at each healthcare encounter. Create system change which positions clinicians to use tools such as emotional intelligence and motivational interviewing to ensure optimal sharing and comprehension. And not only collect data from these encounters, but rather turn the data into information and the information into wisdom by co-creating with the patient and family care pathways that are 100 percent aligned with the now understood preferences of the patient. Lastly, develop systems which track progress toward achievement of the co-created care plan (measure the impact).

If we are going to truly

  • engage patients and families,
  • improve patient satisfaction, engagement, activation,
  • improve clinician satisfaction and retention,
  • ensure resources are not wasted (save healthcare dollars), and
  • profoundly change and improve the healthcare system,

then we must.

Yes, Neal, it was so great to meet you. Thank you for allowing me the opportunity to learn from you.

Taking a Bite Out of Mixed Food Messaging

Cindy Hutter
Cindy Hutter

When I first saw McDonald’s Olympic themed advertising that shows Olympians biting their metals contrasted with good looking, fit, young adults biting into chicken nuggets with the tagline, “The greatest victories are celebrated with a bite,” the marketing professional in me thought that was very clever. The parent and healthcare professional in me were horrified.

There are millions of kids watching the Olympics and dreaming of being the next Ted Ligety or Meryl Davis. They are fantasizing about walking into the Olympic stadium for the opening ceremony in a (probably ridiculous looking) red, white and blue outfit. They are picturing themselves standing on the winner’s podium with a shiny metal around their neck and the US national anthem playing in the background. (Even way past my youth in Olympic years, I’m mesmerized by the Olympic spirit and still hold onto the dream of one day being an Olympian regardless of how unrealistic it is.)

But in between watching Gracie Gold on the ice or Bode Miller on the slopes, nearly every commercial break has that McDonald’s bite commercial. How many kids are seeing this commercial and equating McDonald’s chicken nuggets with being an Olympian? McDonalds is an official sponsor after all and there are easily two dozen Olympians featured in the short ad.

Chobani yogurt is also an Olympic sponsor. They’ve been running ads with the tagline, “It’s one thing to sponsor US Olympians. It’s another to be in their fridge.” I wonder how many kids are watching this commercial and see eating Chobani yogurt as a way to be just like hockey player Zach Parise or snowboarder Lindsey Jacobellis, both featured in the commercials.

It’s impossible to control the spin that is put on food advertising. However, as adults who make food purchasing decisions for the children in our lives, we have near complete control in deciding what our children eat and establishing and modeling healthy eating behaviors. It’s not like children can get in the car and drive to McDonalds or the grocery store to get yogurt themselves—even though some days that would be nice.

So, I have a challenge for you. Take 5 to 10 minutes this week, and ask the kids in your life (your own, nieces, nephews, neighbors) about what they think US Olympians eat. Ask them about the McDonald and Chobani ads. Do they think eating these foods will help them become an Olympian? Make note of how you respond and post your findings in the comments below. Let’s get a conversation going about how to talk to children about healthy eating behaviors.

What Rosie Revere, Engineer Teaches Me About Innovation

Marianne McPherson
Marianne McPherson

My daughter loves to read Rosie Revere, Engineer, a children’s book about a young girl who dreams of and practices at becoming an engineer. Rosie nearly gives up that dream when she’s laughed at by some of the people closest to her after her first few inventions aren’t first-time successes. But with some encouragement from her great-great-aunt Rose (homage to Rosie the Riveter), young Rosie keeps at her innovating and engineering, building a flying machine called a heli-o-cheese-copter. In the process, she comes to realize that:

“Life might have its failures, but this was not it. The only true failure can come if you quit.

I’ve been thinking about innovation a lot lately, in large part due to a renewed commitment at NICHQ to be a hub for creating and spreading innovations. I am so excited about this commitment because I know that new ideas and new approaches—and building them together—will help create a world in which all children achieve their optimal health.

“But questions are tricky, and some hold on tight…”

Further advancing my excitement for innovation, NICHQ was recently awarded a cooperative agreement by HRSA’s Maternal and Child Health Bureau to lead the national expansion of the Collaborative Improvement and Innovation Network (CoIIN) to Reduce Infant Mortality. This initiative provides a platform to transform children and their families’ lives, drawing on quality improvement, collaborative improvement, and innovation to do so. We feel privileged to join with an incredible group of partners and build on the work of CoIIN participants in the first 19 states in which this initiative is already underway. As we spread the effort to up to 31 new states and eight territories, we are honored to hold on tight to the tricky question (as young Rosie would say) of how to reduce infant mortality, improve birth outcomes, and address health disparities in this country. We hold onto that question because we are committed to the vision of a nation in which every child celebrates his or her first birthday. (If you are, too, and especially if you’re already working in this area, please comment on this blog post so we can follow up.)

Baby Luke
Baby Luke

One of the reasons that I hold onto this question is that my cousin, Luke, never got to see his first birthday. In 2010, 24,586 families experienced the life altering heartbreak that my family experienced. We can do so much better. For every family to celebrate their child’s first birthday, we will learn and work in partnership, we will improve where the path is clear, and we will innovate where it is not.

“You did it! Hooray! It’s the perfect first try! This great flop is over. It’s time for the next!”

I invite you to join our conversation and join in our work. As Rosie knows—she has a closet full of parts for building her inventions—and as Steven Johnson writes in Where Good Ideas Come From, “the trick is to get more parts on the table.”

What might that look like, exactly? To start, NICHQ will be putting more of our parts (and combinations of parts) on the table externally in, for example, more blog posts like this one. We invite you to join the conversation and help us make the next great flying machine (tell us if we’re flopping and how to fail forward!). Bring some parts to put on the table (maybe even guest blog about them!), follow us on social media like Twitter (@NICHQ, @mariannephd). Our table is not just the one in our office conference rooms. That table is in our conversations with those who, like we at NICHQ, are committed to a world in which all children achieve their optimal health. We recognize that those parts may come from healthcare, or from architecture, or from children’s literature. So please, come to our table and join the conversation, and invite others to join it, too.

“It crashed. That is true. But first it did just what it needed to do. Before it crashed, Rosie…Before that…It flew!”

As Rosie taught me, getting parts on the table means that some combinations of those parts won’t work, either on the first try or ever. Just as I’m committed to NICHQ putting more parts on the communal table as we iterate and innovate, I’m committed to us sharing what combinations haven’t worked. In the months that I’ve been leading our innovation initiative and learning a TON as I go, I’ve held onto a few things:

  • Innovation is rare. Because it’s so rare, it’s both a destination and a journey. And that journey involves a lot of great flops on the way to the flying machine.
  • Innovation is not a solo flight. (See above re: parts on the table in public!)
  • Innovation has a lot of buzz, but it’s buzz worth striving for, especially if it means that just one more child will have her first birthday, that just one more family will have a safe outdoor space for their child to play, or that just one more adolescent receives timely treatment for substance abuse.

So, what is your heli-o-cheese-copter? What is the next one we’ll build together? Join us at the table, and please bring some parts.

Marianne McPherson is the Director of Applied Research and Evaluation at NICHQ.

Should We Ban Valentine’s Day Candy in Schools?

Karen Sautter Errichetti
Karen Sautter Errichetti

As a school committee member, one of the questions I get asked most often about any holiday we celebrate in schools is “Will you be banning sweets this year?” I’m always surprised by this question because the practice of bringing in sweet treats is itself a longstanding cultural tradition in my school system.  In fact, I think there would be people with pitchforks and torches in my yard if we banned this practice.

A friend sent me this article this morning with the provocative title “School Bans Valentine’s Day Candy,” making me revisit this topic.  In this case, the principal explained the rationale for the ban to parents like this:

We are working to encourage healthy practices as well as manage food choices in classrooms where food allergies are present in order to maintain a safe environment.
Similarly, other schools across the US have made the choice to limit or ban candy and other indulgent food. The rationale is the same in almost every case: wellness and safety.
At a recent staff gathering at NICHQ I asked the question: Why do we ban things in the name of health? In public health, we use law and regulation to ensure public safety and prevent illness and death. It seems like the right thing to do: ban the things that are bad for people and promote or incentivize the things that are good for health.  In particular, schools become targets for these kinds of strategies. But what is the evidence that this actually works?
In our work to prevent childhood obesity, for example, many states have implemented policies to limit or ban sweetened beverages in public schools. The link between sugary drinks and obesity is well-researched. According to the Harvard School of Public Health, children and adults are drinking more sugary drinks than ever before, and there is evidence that both children and adults are better able to control their weight when they reduce their consumption of sugared beverages.
Based on this evidence, it seems like the right thing to do to ban sugary drinks in schools. Unfortunately, the literature presents a mixed bag regarding whether these policies actually reduce student consumption of those drinks overall, and in turn reduces obesity.  A 2012 national survey in 40 states by Taber et al. illustrates this point.  Taber and his colleagues found that while fifth and eighth grade public school students reduced their access to sugar-sweetened beverages, these children had not reduced their consumption of these drinks. It’s still early in our battle with childhood obesity, and many child advocates are still experimenting with these policies.
If I’ve learned one thing from NICHQ’s work in the obesity space, it is that there is no one magic bullet to prevention and reduction of obesity.  It takes multi-sector partnerships including all stakeholders to try to move the big dot toward healthier children. Policies to restrict access to foods linked with increased obesity are only part of an arsenal of tools we have tried to curb obesity.  As we continue to experiment using policies limiting or banning access as a means to improve public health, we can benefit from applying quality improvement approaches to test our ideas.
In our community of North Reading, my school committee has never voted to ban candy or any other food item in my history of being on the committee. We prefer to think of policy as something we create in the greater context of student well-being and change, setting the foundation for application of evidence-based practice. Simply banning a food item is a band-aid on a larger problem that deserves a comprehensive approach. We still have a long way to go on the topic of childhood obesity, and we owe it to our children to think outside the cupcake.
What are your thoughts about banning Valentine’s Day candy to improve child health? Please share your thoughts by commenting!
Karen Sautter Errichetti is a two-term elected member of the North Reading School Committee in Massachusetts.  The views expressed in this post are those of the author and do not necessarily reflect those of NICHQ.

The Secret Ingredient to Fixing Systems Problems

Cindy Hutter
Cindy Hutter

In full disclosure, I didn’t see this firsthand. The photo was passed on to me with the caption, “You had one job.” Instead of the chuckle it was intended to elicit, the message made me a little irritated. I started to think of all the places where there was a breakdown in the system that allowed these mislabeled products to hit the grocery shelf.

No matter how automated a factory is, surely someone must have noticed that the incorrect packaging was being used on the hamburger buns. Did a factory worker raise a red flag? If she did, was it ignored? As the stock boy was unpacking the hamburger rolls at the local grocer, didn’t he notice? Was he on such autopilot that he genuinely missed it? Or did he simply think it wasn’t a big enough issue to care?

What about every other stock boy or girl at all the supermarkets that received the mislabeled products. Did none of them notice? If someone did notice and called the manufacturer, did the company care? Did the bun company call back the mislabeled products? What happens if someone eats one of those buns and has an allergic reaction because the product inside was not as advertised on the package?

Yes, the difference between a hamburger bun and hotdog bun, which most likely are made with the same ingredients and the same process, sans the shape, won’t likely cause harm. However, what if that mislabeling was on a product that contained peanuts? Or a household cleaner with toxic ingredients? Or even a medication? These might have serious consequences.

Working in a quality improvement organization, we view undesirable outcomes as the byproduct of poorly performing systems. We teach that to uncover the problem in a system causing the unwanted result, you need knowledge or information.

It sounds simple enough. Of course you need knowledge and information to get to the root of a problem and make a change that will hopefully result in improvement. But more often than any of us like to admit, decisions get made without enough knowledge.

For example, I bought a Kindle because I thought it would help me to read more. It hasn’t. Whether I have a hard copy or an electronic copy of a book isn’t the issue; it’s carving out time to read that is the problem. If I had spent even a few minutes asking myself questions about why I don’t read enough, I could have saved the money I invested.

Or to go back to our bun example, the bun company’s vice president of operations may decide the root of the problem is a shortage of hamburger bun bags at his factories. But, even after the additional bags arrive at the factories, the mislabeling issues continue. A little knowledge seeking, perhaps talking to some of the workers, would lead him to the real problem: workers can’t detect the blue and green colors that are meant to distinguish the hamburger and hotdog bun bags or simply can’t read the language.

The mantra in quality improvement is “every system is perfectly designed to get the results it gets.” Regardless of your system of choice—your workplace, your home, your community—you’ll need knowledge to improve the system and get the results you want. It’s impossible to be a change agent without being a knowledge seeker first.

9,000 Too Many

Karen Sautter ErrichettiEarlier this week, members of the public health community rejoiced at a major victory for healthier Americans. After years of lobbying and the activism of public health professionals everywhere, we realized the fruits of our labor and paved the way for our children to live longer lives. I would have done cartwheels if I were coordinated, athletic, and wore proper cartwheeling shoes.

No, I am not talking about CVS’ decision to stop selling tobacco (although that’s pretty ground-breaking too).

I’m talking about this story. “Fewer U.S. children dying in car crashes.” According to a CDC report released on Tuesday, deaths occurring to children under 12 due to car crashes decreased by 43% from 2002 to 2011. Since crash deaths are the leading cause of child death in the country, this is a big deal.

As a public health advocate, there is nothing more I like better than seeing this kind of headline. But it was accompanied by this statistic: one in three children who died in car crashes 2011 were not wearing a seat belt. That means 3,000 car accident deaths of the 9,000 that occurred over the last decade might have been prevented if seat belts had been worn.

Even more startling was this study finding: Almost half of all black (45%) and Hispanic (46%) children who died in crashes were not buckled up. That’s 1 in 2 children between 2009-2010.

So how can we make sure we continue this downward trend in child deaths due to car crashes in the next decade? The evidence is very clear on public health strategies to prevent child deaths in car accidents. Parents should use appropriate car seats, booster seats and seat belts on every car trip. Strategies to reduce disparities in car accident deaths should also be developed and tested.

At NICHQ, we have applied quality improvement to some of the most daunting public health problems facing children, including childhood obesity, asthma, and sickle cell disease. When we start a project, it begins with a bold aim statement: What are we trying to accomplish?

Healthy People 2020’s objective is a good place to start: Increase age-appropriate vehicle restraint system use in children aged 0 to 7 years by 10% by 2020. But how can we get this done faster? How about 20% or even 30%? Let’s expand this goal to children aged 12 and under. Because 9,000 children is too many.

Weigh in on your ideas to realize this goal in the comments section. Or join our Facebook page and share your opinion!

Bravo CVS! Now It’s Time for More Health Advocates (You) to Step Up

Cindy Hutter
Cindy Hutter

When I saw the first headline come across my Twitter feed that CVS plans to kick the habit and stop selling cigarettes and tobacco products at its stores, I almost didn’t believe it. Wow! Wow Wow!

This is a huge step, and likely a decision that was not made lightly. Could you imagine the pressure all of the tobacco companies must have put on CVS when CVS called to cancel their standing purchase orders? I’m sure there were talks about discount pricing, profit sharing and more to keep the cigs on the shelves.

But also in CVS’s ear was the voice of healthcare provider partners. These are the people who CVS is wooing as it moves beyond the pharmacy and into the treatment arena with its MinuteClinics. I have no doubts the healthcare provider partners said this phrase, “Cigarettes and tobacco products have no place in a setting where health care is delivered,” so often to CVS CEO Larry Merlo that he used it in his press release about the decision.

Since the announcement, there has been a ton of speculation by press pundits if other pharmacy chains will follow suit. As child and public health community members, as concerned citizens, as parents, we all have a voice in helping to get other cigarette sellers to see that banning the smokes is “the right thing to do”—another Merlo phrase.

Yes, a company can ignore concerns from one or two customers. It can’t ignore concerns of one or two million customers. Our collective voices can make a difference. And, it is easier than ever to be heard.

Go right now to Facebook and make a post praising CVS’s decision and like the CVS page. Get on Twitter and tweet or retweet your support for CVS’s decision. Send a tweet or email to Walgreens or any other pharmacy selling cigarettes in your hometown asking them to consider changing their policy. Reach out to others in your sphere of influences—those in your place of worship, children’s schools and sports leagues—and ask for their signature on a letter asking your local store to extinguish their cigarette sales.

Just as peer pressure is what gets many young people to start smoking, peer pressure is what it is going to take to get other cigarette retailers to stop. Let’s start loading on the pressure.

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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