Health IT at the White House

Posted on 26 June 2012 by Peter Margolis

On June 19^th, I was honored to represent the ImproveCareNow network and other learning networks at a White House meeting on how Health Information Technology (health IT or HIT) can improve health outcomes.

Present were about 75 leaders from institutions and practices that have advanced the use of health IT to improve care and outcomes. In his opening remarks, Farzad Mostashari, MD, Director of the Office of the National Coordinator for Health (ONC) IT made a number of important points:

The number of offices using electronic medical records (EMRs) has doubled and about half (2,400) hospitals in the US now have EMRs
Increasing the use of health IT faces many challenges: workforce training, data sharing, privacy and security. The opportunity is to move beyond simply implementing new technology to using health IT to improve care and outcomes. ONC is particularly interested in how to turn data collection through electronic health records into a quality improvement program and so invited groups like ours.
What’s unique about HIT is how fast it can adapt and change in response to needs and feedback
And it’s important to harness the knowledge within the field. For me, this was the most important message of the day and one that’s right in line with what we’re doing in the ImproveCareNow Network and C3N Project. It’s our responsibility to share the knowledge of all – patients, clinicians, and researchers to make health care better. If patients and clinicians don’t speak up and share what they know, patients will suffer by not getting the best care

During the conference participants shared numerous examples of how HIT and the Affordable Care Act are working to make care better, more efficient and cheaper

HIT helps to engage patients in collaboration in addressing their problems. “You use it in collaboration with patients to guide their care.” Mike Zeroukian, MD
Charles Kennedy, MD Aetna. “We will increasingly see health insurers pay for health information exchange and better use of data.”

Participants also noted the many limitations of current technologies including:

Ways for patients to share information among providers
The need for greater public awareness about individual vendors’ willingness and action in making data sharing possible across systems
The need for public usability ratings for EMRs (like Consumer Reports) to spawn greater competition in meeting the needs of practicing clinicians
The need for EMR vendors need to learn about how to support QI

Overall, it was clear that administration officials were listening and that much excellent work is taking place in the field. It’s a pleasure to be able to represent the work of ImproveCareNow and the C3N Project, which is one of several data and knowledge sharing networks for kids with chronic illness. Networks such as ours will be the way of the HIT future.

I’ve been lucky.

Posted on 21 June 2012 by samisophia

It first occurred to me while organizing the Big Blue Box, a jumbled collection of boxes, bottles, and doctors’ notes. A friend walked into my dorm room as I transferred that week’s supply of pills into my backpack. She already understood the basics of IBD, but I took the opportunity to introduce her to my crew of prescription superheroes.

I was diagnosed with Ulcerative Colitis in 2008 at fourteen. It took just one month. I got lucky. I woke up from my first set of scopes to find out I’d won a ride to the inpatient floor. I was told to expect at least a week-long sleepover. Instead, my body ate up the Prednisone like candy, and I managed to break out after three days. Lucky for the second time.

My first superhero was Asacol. It gave me a sweet two months of remission. I flared again in 2009. This was my worst IBD flare to date, no doubt, but again I got lucky. I avoided an inpatient stay. I responded to Prednisone again. The rash on my skin that threatened to take my beloved Asacol away turned out to be a benign condition. I won’t deny the facts: the pain was unbearable at times, I felt very isolated in school, and I re-flared halfway through my Prednisone taper. I still think myself lucky.

I met a new superhero: 6mp. My parents and I feared it at first. It had the dreaded C word attached to its reputation. It came with an abundance of blood tests and risks. It also saved my colon. I’ve had very few side effects, and none of them significant. I expected nausea or worse to come out and, bam, hit me in the face, but they didn’t. Remission finally stuck around. I’ve had no significant disease activity since 2009.

Through it all, IBD was my secret. Poop isn’t really a comfortable topic of conversation in high school. I hated how my disease had affected my high school social life. I decided I needed to reach an emotional remission to match my physical remission: I would control how my disease affected my life, not vice versa. I joined an online support group. I’ve met and bonded with other teens with IBD. I’m a member of the ImproveCareNow patient advisory council. This year, I’ll be a volunteer counselor at CCFA Camp Oasis. I’ve found my voice, or at least I’m trying.

I have friends without colons. I have friends that dream of remission. I have friends that have dietary restrictions I don’t have or feeding tubes. I don’t pity them, but I do consider myself lucky. Every patient’s story is different, and none of us chose our story ahead of time. We didn’t get to preview our particular path through the disease and approve or veto it. I don’t know why my path has been less bumpy than my friends’. It makes me sad. If I could, I would share my remission with them. I can’t explain why things are the way they are, so I just call myself lucky.

That day in my dorm room with the Big Blue Box, all of this ran through my mind.

“This just makes me feel so bad for you,” she said finally.

The story rushed through my head from the beginning – where I started, how far I’ve come. My story is my own, but my passion for sharing it is about so much more than me. Neither of us spoke for a few seconds.

“I’m okay,” I say. It’s true. I’ve been lucky.

How I live with IBD

Posted on 19 June 2012 by alex8799

Optimism is a wonderful thing that the world needs to have more of. Dictionary.com defines optimism as “a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome” or “the belief that good ultimately predominates over evil in the world.” Optimism is what pulls a person through adversity; gives a person hope; and makes patients heroes that serve as role models for other patients.

My six-year experience with Crohn’s Disease has included the bottom up approach in finding medications and without all that much success; hospitalizations; resection surgeries; alternative ways of finding nutrition, and lots of pain. Some may think that it’s hard to be optimistic with all of this, but I have two choices. I guess I could wallow in self-pity or face it head on, and try to stay optimistic. The latter is my choice; I think a better path to follow and it sure makes it easier to keep up the fight.

Some of my optimism is natural or part of my personality I guess. Part of it is telling myself that I can beat this thing and that maybe someday they will find a cure; in fact maybe I will be a Doctor someday and be part of that research. Friends and family certainly help, and maybe the odd distraction (like music, or a good movie …). For the most part I guess I am optimistic because I refuse to give up hope. I believe in staying strong. In my opinion, keep looking beyond the day-to-day challenges and hoping tomorrow will be a bit better. Without hope, there is no way of getting through the struggle.

I also get some of my optimism from others; specifically from other patients. Seeing what others go through makes my battle look small. These patients serve as my heroes and role models – probably because I see what they are going through and certainly can appreciate it when I compare their condition to mine. The biggest hero in my life today does not have IBD; she has Cystic Fibrosis. She has had to put university on hold while she waits for a double lung transplant. She goes in and out of the hospital for weeks at a time and never gives up hope. She is optimistic and in the face of hard times she devotes her time to other patients. What is inspiring is her ongoing optimism; someday, I wish that others would look at me and think the same thing – that good ultimately predominates over evil in the world.

Story of Self | Jill Plevinsky

Posted on 12 June 2012 by jillplev

Jill Plevinsky | Patient Advisory Council Chair

I was diagnosed with Crohn’s disease at age 7 and have grown up to become both personally and professionally invested in the pediatric inflammatory bowel disease (IBD) population. Through my interest in improving the lives of these patients and their families, I became involved with the C3N Project and ImproveCareNow primarily as the founding chair of the Patient Advisory Council, which serves the initiatives of both projects.

I currently live in Cambridge, MA having recently earned my M.A. in child development from Tufts University. As I continue my collaborative work with the C3N Project and ImproveCareNow, I hope to eventually earn my PhD in clinical psychology and continue research and program development efforts that will help improve the accessibility of social support and overall health-related quality of life for all patients with IBD. I have a special interest in utilizing social technologies and social media platforms to do so because my own avid use of these tools has helped me to broaden my own patient network beyond friends I had met through experiences earlier on in life through pediatric support groups and Camp Oasis.

My own experience at these support groups and the Crohn’s and Colitis Foundation of America’s Camp Oasis program initially inspired me to dedicate my higher education and career goals to young patients with IBD, and I hope that my insights and unique perspective from that of a patient and a researcher helps LOOP readers to better understand how ImproveCareNow is striving to make a difference from the top down.

Of Villainous Eels and Amazing Strength (or “I’m sexy and I know it!”)

Posted on 7 June 2012 by noel jacobs

When my daughters were younger, they loved The Little Mermaid, or more specifically the Disney version, with beautiful Ariel, crazy-scary Ursula and, most saliently, her two evil, ever-present eels, Flotsam and Jetsam. In Disney’s tale they are menacing, conniving, willing to terrorize beautiful and sweet creatures of the sea. Our girls used to squeal and scream, grabbing my wife and me for safety whenever Flotsam and Jetsam showed up on screen.

Not unlike the evil sea-witch Ursula, IBD can bring its own kind of flotsam and jetsam into our patients’ lives. Sometimes it feels meaningless, like debris after a shipwreck, sometimes menacing and purposeful like Ursula’s eels. In his blog post “For a Girl Recently Diagnosed with Crohn’s Disease,”‘ Bill Brenner describes his early course of Crohn’s, his eventual return to full living, and what he calls the “mental byproducts” of IBD (http://billbrenner1970.wordpress.com/2012/05/03/for-a-girl-recently-diagnosed-with-crohns-disease/). He is strong, and positive, although he pulls no punches for a little girl who needs to be prepared for what’s ahead. He also tells her he knows she’ll be strong, too. The message is real, and it is beautiful.

All this is to say, there are physical and psychological “byproducts” (Bill’s apt term) of IBD. Pain, bleeding, complicated medical and dietary regimens that sometimes feel like wishful thinking, these all create difficulties. Children lose weight and may be teased for being “scrawny,” or become bloated and puffy from steroids and be teased again. These horrors might happen right in the middle of adolescence, when physical appearance means so much socially. Missing school for doctors’ visits, procedures and hospitalization (some of which may cause traumatic responses themselves) can bring a loss of social connectedness and peer support. Weren’t childhood and adolescence supposed to be about fun, about growth and accomplishment?

IBD can, in fact, induce a feeling of lost childhood. Depression, anxiety, body image problems, purposelessness and even suicidal thoughts can and sometimes do accompany this loss. When this happens our young patients need understanding, safe space to openly feel and express their pain. Sometimes they need counseling to help repair real psychological damage and build coping.

And yet there is other debris, like beautiful driftwood, that is found (or created!), picked up, and used in amazingly positive ways. Our patients with IBD can be incredibly strong, like Bill. They have really good moments and smile in their pictures. A teenage patient recently responded on a survey, when asked about how IBD affects his appearance: “I’m sexy and I know it!”

They often learn that pure, simple pleasure can be amazingly powerful, and in fact they may figure this out much earlier than their friends who don’t have such daily challenges. They may have less social time but many develop tough, tight-knit friendships that are much more healthy and supportive than many of their schoolmates. They might know the true value of precious things better, and earlier. They sometimes appear to be “old souls”- as if the negative debris of IBD helped them develop wisdom, purpose and inner quietness faster. Flotsam and Jetsam don’t always win. Love, support, a sense of humor, and –sometimes – help from a psychologist, rescue them from the eels and help them craft their own future.