ImproveCareNow Pwg
Building its success together.
Just after the ImproveCareNow Spring Community Conference last month, I wrote about the anxiety and anticipation that can precede such events. As I explained, “what we really want is to have set a scene that will allow all to feel welcome, included, part of the community, free to share their ideas and expertise regardless of role, and that they will leave having felt both delight and full of the “human affections” that are (or should be) the hallmark of a truly collaborative improvement community.”
After the conference, we asked members of the community—from diverse roles and centers—to share their perspectives on how we did. We hope you’ll enjoy their words. I know we all feel the challenge to maintain our momentum and indeed do even better next time and hope you will join us in finding ways to make our next community gathering equally inclusive and participatory – the very best it can be!
Parent Working Group Year in Review
As 2015 ends I can say the year was nothing short of remarkable. The Parent Working Group (PWG) grew, accomplished and got stronger. The fall Community Conference was a high point for parent participation. My first conference was in October 2012 where 18 parents attended. This year our numbers swelled to nearly 50. Participation on our monthly calls has increased 50% in six months. This growth speaks directly to the partnership between the ImproveCareNow Network and parents.
Project WOW (Wear an Ostomy for the Weekend)
Project WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn't have had surgery and the ostomy wouldn't be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time "walking in patients' shoes", which is something often times difficult to accomplish and not easily seen.
Interview with Laura Mackner
Laura, can you give us a professional snapshot of who you are?
I have several roles and titles etc., as you can see by my signature. I primarily conduct research as an Investigator in the Center for Biobehavioral Health at Nationwide Children's (NCH). That's about 85% of my job. I also do some clinical work, primarily with children with IBD, as a child psychologist working with the IBD team and in the Division of Pediatric Psychology at NCH. This is primarily outpatient psychotherapy, although in the past I have also done inpatient consults and work in the GI Clinic. Finally, I have an academic appointment at Ohio State University, in the College of Medicine in the Department of Pediatrics, providing training and supervision to psychology and GI interns, residents and fellows. What will you be sharing at the Community Conference?
I'll be leading a breakout session on peer mentoring and giving a presentation on psychosocial issues in pediatric IBD.
For the session on peer mentoring, I'll (1) discuss some of the research on mentoring programs and some of the "best practices" that have been developed from this research, (2) identify some practical resources for developing a mentoring program that exist, and (3) we'll spend most of the session discussing challenges specific to developing a peer mentoring program for youth with IBD. I'll discuss the peer mentoring program I've been running at NCH, and I hope to brainstorm with the participants in the session about some of the challenges that all mentoring programs face (e.g., recruiting male mentors) as well as some of the challenges specific to IBD mentoring programs (e.g., confidentiality, mentor-mentee matching issues). Jennie David and Isabelle Linguiti will be joining me to sharing their experiences with formal and informal mentoring and help with brainstorming as well.
For the presentation on psychosocial issues, I'll be discussing psychosocial issues that affect patients and families living with IBD, and how psychosocial issues can also affect health outcomes in IBD. We know that IBD can affect pretty much any area of life, so I'll be reviewing the research on overall quality of life, emotions, social life, school, and family. I'll also review research on the risk factors that have been identified that suggest which children are more likely to experience problems in these areas. Then I'll discuss how psychosocial factors can affect IBD, and things we can do to address psychosocial issues that may also affect IBD. How does this session/focus pertain to parents? Or how can parents use the information as part of our mission to help improve care.
For peer mentoring, we initially ran focus groups to develop our program, and our NCH parents had a lot of great ideas. I'd love to hear from the ICN parents, and I hope the information provided in the session will be useful for any parents who are interested in developing a mentoring program.
For the presentation on psychosocial issues, parents certainly play a role in the psychosocial health of their children, and I'll specifically be discussing ways we might be able to improve psychosocial and physical health.
Buzzy: A small tool to help in a big way
Three years ago my son started on Humira in an attempt to get his Ulcerative Colitis into remission. Although it quickly became apparent that Humira was controlling his UC, my husband and I were struggling to successfully administer the drug. Our process consisted of 30 to 40 minutes of negotiation along with bribes and other unsuccessful attempts at minimizing the injection pain. We tried our best to allow our son to have some control over the situation by waiting for him to tell us when he was ready. In the end, we were just getting frustrated. That is when we found Buzzy.
My Interview with Melida from the ICN Exchange Team
Melida, can you give us a professional snapshot of who you are?
I have an elevator speech, “My name is Melida, I am passionate about Information and Knowledge Management & Knowledge Creation within research communities. I believe good data makes all the difference.” I also have a professional identity: Melida Busch, MLIS, and Director of Cincinnati Children’s Edward L. Pratt Research Library, of which I am proud. I work with the @ICNExchange team which provides me the pleasure of being connected to the ImproveCareNow community.
What will you be sharing at the Community Conference?
My colleague Sheryl Sheldon and I will be presenting on the use of the ICN Exchange as an empowering tool for all members of ICN to “share seamlessly and steal shamelessly”. The ICN community produces a lot of tools and resources, but until we use them, share them and improve them, they really aren’t very meaningful. We’re hoping to make our break-out session very practical, i.e. “This is how you use the ICN Exchange”, while reminding folks that it’s them and not the tools that make the ICN Exchange powerful. Hence the name for the session: “You are How Data Becomes Knowledge”…
How does this session/focus pertain to parents? Or how can parents use the information as part of our mission to help improve care.
Obviously partnering with patients and parents is a key tenant within the ImproveCareNow community. I think increasing both the amount and the diversity of the tools, resources and stories that patients and parents share on the ICN Exchange will have a direct impact on the improvement of care in the treatment of children with chronic IBD throughout the network.
Also, sharing in the commons increases your sphere of influence, not only in the potential number of people reached, but also in the ability of those whom you do not currently know to find your contributions later. You have the ability to make a big difference in your community long term, with what feels like such a small action.
The Story of Empowered by Kids
Justin Vandergrift believes when you’re meant to do something, doors will open. But you have to be there when the doorbell rings. You have to open that door. And Justin has opened a lot of doors in his life. He runs multiple companies, volunteers at Levine Children’s Hospital, and has made it his mission to deliver hope and inspiration, information and empowerment to families (just like his) living with a chronic illness – like Crohn’s disease, which his daughter Kathryn has
Crohn’s disease, along with ulcerative colitis, is also known as Inflammatory Bowel Disease or IBD.
I asked Justin to share the story of Empowered by Kids (EBK), the non-profit he co-founded with two other parents (Tania Moon and Julia Ament-Cox), to fast-track the delivery of hope, inspiration, information and empowerment where it’s needed most.
The story begins with an ImproveCareNow (ICN) Learning Session and a greeting card.
At his first Learning Session, Justin remembers Mary Jones from Texas Children’s sharing how she designed a card and filled it with greetings from patients and hand-delivered it to kids with IBD staying on the inpatient floor. It was a huge success.
Justin loved the idea, so he partnered with an aspiring artist and pediatric IBD patient back at Levine to design a card and then filled it with greetings from patients. He printed the cards and added them to the inpatient care kits the Levine support group put together. The response was amazing!
“I remember our Social Worker telling me the cards were the very best part of the care kits!”
Building on the success of the greeting cards, Justin and the ICN Parent Working Group hatched a plan for a “Book of Hope” - a collection of stories and greetings from parents and patients with IBD, designed to deliver hope well beyond the walls of a single hospital. Enthusiasm for the project was overwhelming! But it was not clear how to pay for it and what the legal implications might be. Sensing the door closing, Justin turned toward the next.
For his birthday, he wished for nothing more than the support of family and friends, and was overwhelmed by their generosity. Recognizing this as the opportunity to bring Book of Hope to life, he teamed up with Tania Moon and Julia Ament-Cox, whom he had been working closely with on the project, and EBK was born.
In six short weeks, the trio established EBK as a 501c3 non-profit, launched a website, laid out stories from 25 parents and patients with IBD in the first edition of the Book of Hope, and printed 10,000 copies.
They arrived at the Fall 2013 Learning Session with hope in hand, and blew everyone away as they unveiled the Book of Hope and invited ICN care centers to order as many copies as they needed (free of charge) to give to all patients and families with IBD across the network. Today, Justin estimates over 60% of ICN centers have the Book of Hope in stock. And it is always available for free download online here.
The Book of Hope, like everything EBK creates and shares, is designed for parents and patients, by parents and patients. Everyone at EBK has lived through chronic illness diagnosis, and is still on the journey. Their goal is to make it just a little bit easier for those that come after them by sharing tools and information that empower patients and parents to ask good questions and make good decisions; by providing hope and inspiration as a constant reminder that no one is in this alone; and by bringing together a community of people who will continue to support, inspire, educate and empower one another.
Ding Dong…Ding Dong…
Do you hear that? It’s a doorbell ringing. Go ahead open the door. Connect with EBK. They’ve been waiting for you! Here are a few ways to connect:
- IBD Book of Hope, created by ICN Parent Working Group
- Cystic Fibrosis Book of Hope, created in partnership with Erin Moore
- EBK IBD eNewsletter, written for parents, by parents
- Honored Patient Stories, shared across EBK's social media channels
In case you’re wondering, Justin still listens for the doorbell. Here’s a sneak peek at some of the EBK doors that will be opening soon.
- Hope on Demand, an iOS app delivering hope to your apple device
- Hypoplastic Left Heart Syndrome Book of Hope - Winter 2014
- EBK IBD Podcasts, combining ICN center highlights, opportunities and best practices
Sometimes you don’t know what you’ve got till it’s gone…
Recently, the ICN Exchange needed to undergo maintenance unexpectedly for two days. Some people in the ImproveCareNow Network probably noticed it more than others. I know that as someone who has come to rely on it to keep up with what centers are working on and looking at, I was keenly aware of its absence. So you can imagine how thrilling it was when it came back online!
Now that the Exchange is back up and running (and better than ever - with plans and resources in place to prevent such outages in the future!) it occurs to me that even a quick glance at the Exchange clearly shows the richness, diversity, vibrancy—and the multifaceted dynamics of our community.
When I glanced at the Exchange today this is what I saw:
ImproveCareNow centers, like Children's Hospital of The King's Daughters, jumping in and collaborating with parents, patients, and other centers to make sure that we are all learning together!
Opportunities that highlight how much we really, really want and need to learn from each other so we can collaborate even better!
Multidisciplinary partners, like the RD group, are staying connected with each other and getting organized so they can 
take on projects that will build their visibility and leadership in ImproveCareNow.
ImproveCareNow QI teams are becoming even more accountable and transparent in their day-to-day QI work.
Parent Partners are setting their 90 day goals, tracking their progress and keeping the Network informed!
And finally, amazing patients around the country are teaching us more and more every day.
And that is just a quick glance! So thank you to everyone who has been a part of helping us build this vibrant community. I, for one, can’t wait to see where the community goes next!
The ICN Exchange is an internal knowledge-sharing platform that the ImproveCareNow Network uses to communicate, collaborate and innovate across the miles. Clinicians, Researchers, Patients, Families and Improvers are able to log into the ICN Exchange and share seamlessly and steal shamelessly! The ICN Exchange has enabled ImproveCareNow to extend our “all teach, all learn” collaborative approach to medicine far beyond our monthly webinars and twice-annual Learning Session. It allows us to identify ideas and best practices in pediatric IBD care and introduce them into the care delivery process much faster—improving care for our patients now.
Why?
Why?
I ask myself this question as I cry at night.
Why is my child sick? Why has he been diagnosed with this disease? Why so young?
Why?
I ask his doctor this question at his appointment.
Why does it not get better with treatment? Why so many medicines? Why surgery?
Why?
I ask this question to God as I pray.
Why does this child suffer like this? Why does he have this cross to carry? Why him?
Why?
No one will ever forget the day that their child was diagnosed with Crohn’s disease or Ulcerative colitis. From that point on, everything becomes “before and after.” When you have a sick child, all else seems to stop. Your world, your life, your very being centers around helping him or her; all else falls to the side. At least it did in our home when Jimmy was diagnosed.
My name is Liz. My husband, Jason, and I have three sons. Our youngest son, Jimmy, was diagnosed with UC in October of his kindergarten year. We had a very rough year and a half trying to get him into remission. Currently, he is a happy, healthy eight year old with the help of Humira.
Now our goal is to build up what was lost during those years of active disease. We are checking off delayed milestones – riding a two wheeler, trying sports, as well as physical milestones like delayed growth and loss of those precious front teeth. These diseases affect the whole person and the whole family in ways it is hard for those who have not lived it to comprehend. It is our role as parents to help shift the focus off of why and onto how - how do we build up our children?
In October 2013 I attended my third ImproveCareNow Learning Session as the parent representative for Riley Hospital for Children. It is the development of these “how’s” that inspired me to get involved with ImproveCareNow and with my care team at Riley. Not only do we want to understand how these children get this disease and how to treat it, but I love that ImproveCareNow focuses on other how’s - like how to achieve a higher remission rate, how to increase adherence and how to transfer children successfully into adult care.
At the Fall 2013 Learning Session there were twenty parents in attendance. As pre-work for the session, the parents were asked to answer two questions:
What is your vision of improved care?
What does pre-visit planning with your child mean for you?
The objective of asking parents to answer both these questions, and our attendance at the Learning Session, was to give perspective on the whole picture of these diseases.
[Editor’s Note: Liz D is the mom of a three boys. Her youngest son was diagnosed with Ulcerative Colitis at age 5. She volunteers her time as a parent representative on the Riley Hospital for Children Parent Mentor Group, where she is an advocate for all families with IBD receiving care at Riley. A mechanical engineer by trade, Liz has “retired” and loves her role as a full time wife and mother. This has also allowed her to pursue her love of all that is artistic and creative. Over the past 12 years, she has taught both photography and memory preservation classes to both adults and kids.]
ImproveCareNow to Publish CIRCLE on IBD Transition
The December issue of CIRCLE will be published on Tuesday November 27th. The eNewsletter, which is published by ImproveCareNow for patients & families living with Crohn's disease and ulcerative colitis, will feature parents talking about transition points, supporting each other and the importance of caring for their kids now. We'll include some tools and resources on transitions too. And as always, you'll find links to trending IBD topics from the past month, up-to-date ImproveCareNow remission rates and more. Don't miss it. Sign up to have CIRCLE delivered to your inbox today.