ImproveCareNow Ibd


Why I'm proud to be part of ImproveCareNow...

Dellal George Dellal | Program Manager

As the ImproveCareNow program manager, my role is to coordinate and align all the people who tirelessly work to make ImproveCareNow the leading learning health system in the world.

 

I stumbled across ImproveCareNow in 2009, when I was looking for an opportunity to use my project management and process improvement background to help improve the healthcare system.  I quickly became hooked. I’m writing this post to express some of what inspires me about our work and makes me so proud to be a part of ImproveCareNow.



Sharing:

 

John Wilbanks once said to me “people want to share, the problem is that our systems are set up to restrict and disincentive sharing”. To give an example, two clinicians from different ImproveCareNow centers wanted to collaborate on a handbook to help kids better manage their IBD. However, before they could share their drafts with each other, lawyers from their respective hospitals spent several months going back and forth on copyright and branding issues. This is a classic example of what we call a ‘transactional cost’. These costs make sharing almost ‘not worth it’ and prevent the kind of collaboration that is necessary to change healthcare.

 

One of the ImproveCareNow Network’s aims is to reduce and eliminate transactional costs by designing systems that reward sharing and more importantly make it easy and convenient. A great example is the ImproveCareNow Exchange (picture Pinterest for healthcare). This internal collaboration platform has been developed by a team of volunteers to make it easy for patients, parents, clinicians and researchers to share and discuss tools and ideas to improve chronic illness care for kids with IBD.

 

Colletive Intelligence_PCORI_SlidesTools to improve healthcare are almost always ‘non-rivalrous’; meaning just because one person uses a certain tool doesn’t mean it won’t work or be helpful to someone else. Let me paraphrase Peter Gloor who described it nicely in his book “CoolFarming”: Two people walking opposite directions on a path meet and decide to give each other a dollar, as a result they each walk away with a dollar. The next day the same two people meet and this time decide to share with each other an idea they’ve had to improve healthcare, as a result they each walk away with two ideas to test.

 

At ImproveCareNow we have brought together hundreds of patients, parents, clinicians and researchers and enabled them to share tools and ideas. As a result they are all walking away with many more ideas and tools to transform care. This is the power of sharing.  Our collective intelligence and ability is so much greater than our individual intelligence and abilities.  It is this kind of power that is necessary to tackle the thorniest of our nation’s challenges: How do we provide our children with the care they deserve?



Technology:

 

I recently saw the following tweet:  “How do you know you work in healthcare? There’s still a fax machine in the office and moreover it’s used”.  It really summed up a lot of the technology challenges healthcare is facing.  We are trying to solve today’s problems and improve today’s care using outdated technology. No wonder we’re frustrated! At ImproveCareNow we’re fixing that.

 

ImproveCareNow has developed a data-in-once registry (called ICN2) to harness clinical data collected routinely by our clinicians at the point of care.  These data are enabling us to research which treatments work best so we can feed that information back to our centers and they can improve care for their patients.  Additionally, we’re using cell phone apps and SMS messaging to collect patient data which helps patients understand their IBD better and allows clinicians to work with them to customize care. And this is just the beginning. We’re working towards a technology http://ginger.io/join/c3ninfrastructure that combines clinical data and patient data; a system in which patient health can be monitored remotely and disease flare-ups predicted and prevented. That’s the promise of technology and our future healthcare system.



Learning from Variation:

Fred Trotter writes “when you’ve seen one medical practice, you’ve seen one medical practice”.  Each ImproveCareNow center operates differently; each has its own unique culture, processes and systems.  While this variation presents challenges, it also presents a huge opportunity.  Quality Improvement teaches us to embrace and learn from that variation. What does care center A do that care center B doesn’t? What impact is it having on patient outcomes?  Where is the positive deviance (better solution)? How can we spread it?  These are the questions that our team asks every day, and embedded in their answers are the reasons we have been so successful at improving clinical outcomes.

 

I could keep writing. But this post is long enough already.  I’ve tried to convey some of the top things that make me so excited to get to work every day. But, the thing that inspires me the most are the stories I hear from our patients and families. They really are heroes - sharing their experiences, ideas, time and energy so that together we can improve the care and outcomes for all kids with IBD.


Collaboration in healthcare. Why?

[Editor's note: This post was written by Nicole Van Borkulo, a QIC working with the ImproveCareNow Network, specifically on patient and family engagement. Nicole wanted to take this opportunity to explain, from her perspective, why collaboration in healthcare - or working together to get healthier together - is so vitally important, and to ask you to please show your support for this work via the healthiertogether campaign.]

 

The multi-disciplinary team at UNC Chapel Hill shows us what collaborative healthcare looks likeWhy is collaboration in healthcare so important? Why are all voices needed to achieve the best outcomes?

 

Here is what I know…

 

I have spent the last 10+ years working as a Quality Improvement Consultant in the healthcare system. Much of this time has been spent working directly with safety net primary care practices.  The providers and staff at these practices are hardworking, mission-driven people who are really doing their work with the intention of making things better for their patients. And yet, there have been many times and many moments when I’ve been rendered completely speechless (no easy feat) by a comment or a process that is so NOT patient-centered.  How can these bright, amazingly gifted people not see that what they are doing isn’t the best approach or process for their patients and families?

 

Please don't misunderstand, I am not writing this to be in any way disparaging of the work or the people. But it illustrates an important point and something I have come to realize is that we – as humans – sometimes lose site of the importance of asking others what really matters TO them when we are doing something we think matters FOR them. Case in point: when my oldest son was about to turn six (he is now 16), I planned an over-the-top car themed birthday party. He loves cars! Of course this was going to be just perfect for him.  Two days before the party, he was crying in the kitchen telling me he didn't want a car party.  He actually said, ‘…but you didn’t ask me, Momma…’ Hmmm… I was so sure that what I was doing for him was the best thing. My intentions, my efforts were good; my assumptions weren’t. I hadn’t asked the person with the biggest stake in the game what mattered to him.

 

Part of my time is now spent working for ImproveCareNow (ICN), an innovative network of mission-driven care centers working tirelessly to improve the care and outcomes for pediatric patients with IBD (Crohn's disease and ulcerative colitis). If you read this blog regularly, you know some of the stories and the people involved.  The physicians and care teams have shown what real improvement can look like. The remission rate (77%!) is impressive and was unprecedented prior to ICN.  But, we aren’t at 100%.  Now is the time to broaden the pool of collaborators, to include the voices of ALL stakeholders in the effort.

 

It is time to start asking 'what more can be done', or 'what can be done differently to increase the remission rate even more?' ICN wants the opportunity to build a truly collaborative network that includes leaders from ALL healthcare stakeholder groups at the table - patients, families, care teams, and researchers. ICN wants to be a network truly led by those with the biggest investment in the outcomes. ICN wants all children and young adults with IBD to get better, faster.

 

Can you help? Will you help by September 15th?

 

If you haven’t already, please go to healthiertogether.org and support the campaign by sharing a story or picture or video or statement to let us know that you also believe collaboration of this kind in healthcare is so important – to you, to your family, or to others you may or may not know.

 

To truly improve the system of healthcare, we need to hear all voices. We need to hear from you to improve care NOW.


The Kindness Project

Throughout college, I worked in a research lab studying coping strategies of women who are HIV+, and one thing that we looked for in each participant was ‘mindfulness.’ To be mindful is just what you might think: being conscious of what’s going on, what you need, and what others need around you. Mindfulness is being in the moment, although not so much being spontaneous as being considerate to yourself and to others. If you ask me, mindfulness is one of the hardest skills to train yourself on and put into action.


dearest 13 yr. old me

Moriah at Crohn's WalkDearest 13 year old Me,

 

You want so badly to be brave, but you don't think you are.  Instead, you believe that crying means weakness and guard yourself from others to hide from the feelings of insecurity, embarrassment, and frustration.  Here, where you come to the point of realizing how poor and needy you are, is where you will begin the journey of believing that you are brave.

 

No, you won’t ever like fruit punch, Nesquick, Jello, being touched in spots that needles go, the smell of anesthesia, or the look of medical equipment.  You will have to encounter these often and will decide down deep in your soul that you will not be overcome.  You will make bracelets to raise awareness that almost all the girls in your high school will wear, and will raise 5,000 dollars for research.  You will run a half marathon. You will graduate Summa Cum Laude. You will be a teacher.  You will have overwhelming support from people you love you.

 

Having Crohn’s is messy, difficult, sad, angry, emotional, unjust, and terrifying.  You will feel many of these things.  It will be hard because it is these feelings that will betray you and cause the traumatic events to be seared in your memory.  I’d like you to fight to control your mind, to shut the door on unhelpful memories, and to continue to move forward.  Your feelings are valid but they are not the only truth.  They are not who you are.  Who you are is loved.

 

At the end of the day you will face challenges, and on top of that you will have to battle Crohn’s.  I bet you wish you could catch a break. You feel trapped inside your own body that doesn't quite work right; that may be the hardest part of all.

 

This is the part where you remember you are braver than you think.


Let's get healthier together

An independent nonprofit, Lybba uses our talents in product design, communications, film, and technology to create networks that are both healing communities and vibrant laboratories.A must-read reblog from The Lybbaverse - about getting #healthier2gether.

 

There are many reasons why ImproveCareNow (and collaborative healthcare networks like it) is a good thing.  The website at healthiertogether.org is a venue for everyone who believes healthcare is better when patients, families, and care teams are able to work together, learn from each other and share insights.  It is a place to share reasons and what matters, or to simply say "I Support ImproveCareNow" or "I Support Getting Healthier Together".

 

Please help us reach our goal of 1,000 people showing their support by September 15th.  Each one of us can make a difference.  Together we can make change.  Please share your voice - today.

 

How can you share your voice and help?  Visit healthiertogether.org today and show your support.  Support comes in many forms - a note or a novella, a photo or a poem, a story or a song. Share widely. 

 

Thank you.

 

Not sure what ImproveCareNow is?  Read the Purpose Statement.


To Little Jennie

To my 12-year-old, newly diagnosed self:

Jennie David on the 4th of July just a couple months before being diagnosed with Crohn's disease

For a long time, you will regret your decision to tell your parents that you were hurting. You will wish you had kept the pain and the blood and the fear a secret so that you wouldn’t be different and sick.  You will wish it very much, using up your wishes on birthday cakes and fallen eyelashes. But first, let me tell you, you did the right thing and that not telling your parents would not have kept you from getting sick.

 


because these things will change.

Sami_scope

 

Hey.

 

Breathe. I know you want to scream right now, because it hurts so bad. I'm sorry.

 

I know you struggled to sit through that presentation. I know you didn't leave because you were afraid you'd get in trouble. You didn't want to be embarrassed. You wouldn't know what to say. You have diarrhea and it's really bloody, and I know that scares you. I know there's no way to say that easily, so you keep quiet. Some days, it's just blood. I know you wish you could talk about it. One day, you will.

 

I know you're scared. Scared that next time, you won't make it. Scared that the line outside the stall will start to get impatient. Scared that everyone will notice it's you giving off that smell. I know you wish you had more hands, so you could plug your nose, grip the rail, and hold your aching belly at the same time. I know you worry that one day, the pain won't pass, and you won't be able to wipe and stand up and just leave. You don't know what you'll do then. You're scared to look down, afraid of what you'll see. It's getting worse. The doctor said it would get better. I know it doesn't make a lot of sense to you now. You're eating only the most basic foods. It's a bagel every day for lunch, maybe white rice and a banana for dinner. You're staying hydrated before you run. That was supposed to make it all better. No matter what you eat, the pain makes you moan and cry and scream, but you know you get through it every time. You're going to get a break soon. It will be okay.

 

15167_173271543634_6732132_n

 

You're going to face something even worse than that pain, too. Bad doubt, worse than the worst of your pain. It will hurt you more than anything. Trust yourself. Your pain is real, and you are not weak. You are loud and smart and spunky. Be that girl, even through the pain. I know you think letting people do nice things for you will make you not-a-grown-up, but let them. It's not baby-ish to need a hug or do a silly craft. Keep that in mind...say, two weeks from now. That was a hint. Hey. Really. You're being more of a grown-up than you know right now, even right within that stall.

 

I'm sorry. I'm sorry that the field trip you've been anticipating for months had to go this way. I'm sorry that you couldn't eat at lunch. I'm sorry that when you get on that school bus to go home, you're going to sit alone and lay your head against the window, clutching your stomach, wincing with every bump in the road, hoping you see the school before it's too late. I'm sorry that when you go to track practice, you're going to be the last runner to cross that finish line again. I'm sorry that you're going to have to keep running all the way inside to the field house bathroom. I'm sorry that you're going to have to get back in a car to go home. And come back tomorrow to go through the pain and confusion and loneliness again. I'm sorry that you haven't had the normal freshman year you so badly wanted.

 

14

 

I know you're not wondering why you, but you are wondering why, and I am sorry that even I can't tell you that. No one can. But, one day, you are going to dream of finding the answers to questions you don't even know to ask yet. You are going to read books and hear stories about cells and pathways in your body that sound too incredible to be real. But, they are. And you will love those stories so much that you will want to learn every detail of those stories and write your own, too. You will have dreams you cannot even fathom yet. Dreams bigger than the stories and bigger than the pain.

 

I know it bothers you that I'm apologizing. I know if you were feeling better, you'd probably even be angry that I'm being so unclear about everything. This is our story, and you have to live it out to become me. Believe me, you'll like who you become. I'm sorry that you have to feel this pain, and that it's worthy of a letter, but know this: one day, you will speak about this pain, and the crowd will stand up and applaud, and it will be one of the happiest moments of your young life.

 

Hey. Don't look down. Just this one time. You know what's there. Look up. You don't know what's ahead yet or even what your problem is, but one day, you're going to be part of the solution. I know.


Defining and Defying

As of today, I joined ‘the real world’ - aka started my first real-world-full-time-look-I’m-an-adult-honest-to-goodness-getting-paid job. Today went as follows: 1) I ran into the PI of the study (who’s the head of the division, and who I’ve worked for the past couple of summers) and he gave me a hug (the day was off to a good start) 2) Got my ID badge which officially says “Jennie David, Cardiac Surgery, Research” - AWESOME 3) Found out that my ID badge gave me access to the OR (unnecessary, but totally cool nonetheless) 4) Geeked out with a co-worker over the research studies 5) Nearly drooled on my computer at an abstract that’s being presented at an international conference in a couple of weeks where I’m listed as a co-author.

 

Graduating from college is more or less synonymous with the phrase, “Here comes the real world!” To paraphrase a speaker at graduation, if this is the real world, where was I living for the past 21 years? The dictionary defines real as, “actually existing as a thing or occurring in fact; not imagined or supposed.” I would therefore like to argue that my entire life has actually existed and occurred in fact and has neither been imagined or supposed - so I would like to believe it’s all been quite real. The question becomes - what does joining ‘the real world’ mean?

 

For those of us living with chronic illnesses, we joined ‘the real world’ a long time ago, often years before our contemporaries. I would gander to think that ‘the real world’ refers to a certain consciousness, when you are acutely aware that your actions have consequences, that things matter, that responsibilities have weight, that bills need to be paid on time, and that if you put dark jeans in with white laundry you will dye all of your underwear blue. To quote Joan Didion in ‘Goodbye to All That’, a favorite essay of mine (that I highly suggest you read if you find yourself entering ‘the real world’), “That was the year... when I was discovering that not all of the promises would be kept, that some things are in fact irrevocable and that it had counted after all, every evasion and every procrastination, every mistake, every word, all of it.”

 

Definitions are, in virtually every way, relative and changing. Entering adulthood is different for everyone, just as living with an illness is or even a person’s preferences for candy. ‘The real world’ - or the awareness that you have a choice in making things the way you want them - isn’t something that’s prescribed only to the cohort of recent college graduates, it’s something that can happen at any time to any of us. For me, I was 12 and newly diagnosed and began to realize that I had the ability to define what Crohn’s meant for me and to defy what others thought it meant.

 

There is a difference between being chronically ill (a physical reality) and living with a chronic illness (the emotional experience). Today, in the midst of loving my new ID and reading over papers, I was temporarily bothered by the psorasis sprouting along my arms and legs and the ache in my abdomen compliments of my inflamed guts grumbling. Does it mean I didn’t enjoy my first day? Does it mean I can’t be successful at my job? Of course not. I’m just a girl who has a lot of goals and dreams and will work my butt off to get there - step one, doing my best at my research job, step two, getting where I want to go. I’m someone in my own right, and my Crohn’s fits in, but it does not define me in and of itself.

 

I remember the first time I ever heard the term ‘glass ceiling’ and thinking it was a funny way of talking about limitations. After all, even if it’s a glass ceiling, you can see the sky, so is it really that bad? But I think that’s the point - you can see what’s out there, but you’re boxed in and can’t get out. We all have preconceived notions about what it means to live with a chronic illness - we might think it means we can’t have a job, or a significant other, or move away from home, and so on. But at the end of the day, we are free to choose our own definitions - and they can change - and we are free to defy the expectation that a life of illness is a life of suffering.

 

So go ahead - defy expectations, define yourself according to yourself, shatter those glass ceilings. You’re already living in the real world, so go out there and do a downright gutsy job of it.

 

Jennie


Take Steps and Super Heroes

Alex8799 and his take steps team pictureThis past week I took part in the Cincinnati Take Steps walk for the third year in a row. Each year we design a new shirt as a way to come together as a team. This year’s team shirts were superhero-themed; the team name merged with the superman symbol. Seeing the sea of purple at the walk and all those superhero shirts got me thinking about my heroes and how they have helped me cope with my disease.

 

What makes someone a hero in my eyes?  They need to inspire me.  They should make me think beyond what’s normal and make me challenge the status quo.  Heroes change the perspective. They do not let limitations stand between them and what they want to do.  One of my heroes is Alicia Lang; she lived most of her life with Cystic Fibrosis. She was in the hospital for weeks at a time and half of her lifetime. Yet she always had a smile on her face and did not let her disease stop her from helping others. I met her at the Cincinnati Children’s Hospital Patient Advisory Council. She would roll into our meetings every month and you could not help but feel her presence in the room. Now the PAC meetings feel emptier without her smile. She lost her battle with Cystic Fibrosis, but her influence lives on.  She taught me that the tough times are the best times; it is a time for kindness, a time to step it up a notch, a time to smile, and a time to be a hero.

 

Heroes also inspire.  Jennie David and Sami Kennedy are two other inspirational heroes.  They inspire others by spreading their story.  They help others through their own fight by sharing their experiences; sometimes this is with humor (sharing opinions on what toilet paper is the best), other times sharing their experiences while going to college.  They have set high expectations for themselves and have made a lifelong goal of helping others with IBD. They have taught me that I can talk about poop as much as I want to, and that no matter how high the goal I can achieve.  They have taught me that, despite my Crohn’s disease, going to medical school is not out of the question; and that I am not going to accept anything less than a life as a pediatric gastroenterologist.

 

So why this blog about my heroes? Heroes are everywhere. They can be your Mom or your Dad, they could be someone that helps you at school or someone that you meet through circumstances that bring you together to fight a common cause.  In this virtual world, they could be a person you’ve not met face to face, but you admire from afar. Heroes are people you can look up to and can help you get through any situation. For me, when times are tough, I just think about all the people I know, my heroes, and those who may have it worse than me. I think about their situations, the experiences that they have shared, and I am thankful and mindful that my situation could be a whole lot worse. Every night I go to bed listening to Zach Sobiech’s song, Clouds, and I think to myself how I can live the next day to the fullest. How can I be a hero?

 

Everyone needs a hero so go out and find one. The hero you have always been looking for could be right in front of you.


IBD and Skin Cancer

Don't Fry Day Logo Skin cancer is the most common type of all cancers according to the American Cancer Society. Check out their excellent infographic.

 

Skin protection and cancer prevention are especially important for kids (and adults) who are taking, or have taken, immunosuppressants (thiopurines as an example) to treat IBD – as the risk of developing non-melanoma skin cancer can be higher for them - according to this article by the American Gastroenterological Society.

 

The National Council on Skin Cancer Prevention has declared the Friday before Memorial Day is ‘Don’t Fry Day’ to encourage sun safety awareness.  As get ready to kick off the Memorial Day weekend, consider these tips to help protect your skin:




    • Do Not Burn or Tan

 

    • Seek Shade

 

    • Wear Sun-Protective Clothing

 

    • Generously Apply Sunscreen

 

    • Use Extra Caution Near Water, Snow, and Sand

 

    • Get Vitamin D Safely



For more information about Vitamin D - including what it is, how much you need and how to get enough - check out Vitamin D - QuickFacts from the Office of Dietary Supplements at the National Institutes of Health.  You can also check out our very first issue of CIRCLE, which featured an article on Vitamin D by Richard Colletti, MD - Network Director for ImproveCareNow.

 


← Previous  1  2    16  17  18  19  20  21  22  23  24  25  Next →

Built by Veracity Media on NationBuilder