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Discrete Choice Experiments to Understand Collaboration in ImproveCareNow

As a graduate student in a business school, I strive to apply what I’ve learned about management science to address problems of importance to society. So needless to say, working on research projects in partnership with the C3N Project and ImproveCareNow (ICN) has been educational and enlightening. Growth of the ImproveCareNow Network has brought both exciting opportunities and new practical challenges, as Sarah Myers discussed in her recent LOOP post. In the spirit of continuous improvement, ICN leaders wanted an enhanced, evidence-based understanding of Learning Labs and other models for collaboration at different levels of scale. And I was thrilled for the opportunity to support this effort.

 

Many of you will recall a survey distributed last summer by ImproveCareNow. The survey presented a series of questions with two scenarios for network-based group learning, asking respondents to choose the scenario which seemed most conducive to learning and improvement. Those paired scenarios appeared to be very similar; a few respondents even wrote to tell us that the survey was defective, presenting the same question over and over again! But, in fact we were using an advanced and efficient method, the discrete choice experiment (DCE), to collect feedback on strategies for continuous learning from within the network itself. Discrete choice methods – common in marketing research as well as health economics and policy studies – use experimental design to assess the relative importance that customers/end-users place on attributes of a given product, service, or scenario. For example, a DCE for the design of new laptop computers might examine factors such as weight, battery life, memory, and price. Comparison of patient treatment options with DCE might explore tradeoffs between efficacy, cost, and invasiveness.

 

Our DCE for ImproveCareNow evaluated three group learning techniques: micro-communities called “Learning Labs”, quality improvement curricula, and team-to-team mentoring. As a research team, we are extremely appreciative of the 149 survey respondents representing 63 ICN care centers. We had a response rate of 65%, increasing confidence that our results accurately represented network preferences.

 

ImproveCareNow Learning Health CommunityOverall, we observed that ImproveCareNow participants preferred mixed Learning Labs (including both novice and experienced care teams) over cohorts of teams with similar levels of experience, sequential curriculum (introduction of topics in a structured succession) rather than a simultaneous overview of QI tools and interventions, and ad hoc mentoring based on focal topics rather than an assigned, permanent mentor team. We also observed interesting variation in preferences across subgroups based on individuals’ time in the network, professional roles, and characteristics of care centers such as patient population size. I am excited to share these results in greater detail – and most importantly, to discuss what we’ve learned with the ICN community – at the upcoming network-wide webinar on Tuesday May 12 (11 ET). Please join us to weigh in!

 

As improvement networks scale up, it is not enough to do more of the same in a bigger way… Understanding how to adapt structures for continuous learning as networks grow and change is necessary for development of learning health care systems. Engaging network participants to share their collective wisdom is essential for improving what ImproveCareNow does, and also for targeted improvements in costs, care, and outcomes.

 

--

 

published by ImproveCareNow on behalf of Shannon Provost

 

A picture of Shannon M. Provost - ImproveCareNow CollaboratorShannon M. Provost, MBA, is pursuing a PhD in Information, Risk, and Operations Management in the McCombs School of Business at the University of Texas at Austin and building a program of research around innovation ecosystems, social networks, and the science of improvement. She is also an Assistant Instructor of undergraduate business statistics. Shannon is grateful for learning opportunities which have emerged through her work as a visiting researcher at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center and as a member of the Institute for Healthcare Improvement faculty. Personal interests include travel, fashion, literature, beagles, and attempting to play golf.

 

 


Parker's Crohn's Diagnosis - One Step at a Time

Parker going on a zip-line adventure before Crohn's diagnosisParker is an energetic, blonde haired, little boy. Just like many boys his age in Vermont, Parker enjoys skiing, bike rides, grass-stained jeans, and his new puppy Bailey. During the summer of 2014 this perfectly healthy heart-throb of a boy was crippled with abdominal pain, fatigue, and weight loss. By the end of summer all of these horrible symptoms culminated in a diagnosis of Crohn’s disease at the blissfully innocent age of 7. As his family was coming to grips with life with a chronic incurable illness, Parker’s symptoms got worse. He was quickly admitted to the University of Vermont Medical Center and received his first dose of infusion medications to fight Crohn’s.

 

“I don't want this for him, there must be a mistake, Parker is my rock” his Mom, Keri remembers thinking. “As a parent you go through the motions and the emotions of a diagnosis. I think the hardest moment for me as a mom, was being strong in front of him, for him, and the family, and then breaking down when I was alone. I remember one moment, late at night in the hospital walking down the hallway of the children's floor, and I stopped. I could barely walk any further. I had to keep telling myself, one step at a time, whatever it takes to move, feeling so isolated and alone, and from that moment on, that has been my motto. One moment at a time, one day at a time, and one step at a time, to just keep moving forward.”

 

After three long days as an inpatient at the UVM Children’s Hospital, Parker was discharged. He almost literally rode his scooter right out of the hospital. With a huge smile painted on his face, you could almost see the shackles of illness begin to release their grip. The energetic little boy that they knew was coming back to the surface with every giggle that squeaked out of him, and they kept moving forward – one step at a time.

 

As the ICN Improvement Coordinator here in Vermont, I first met Parker just a few weeks after his diagnosis. He was getting an infusion and I had come to talk with his family about ImproveCareNow. Whenever I approach patients and families about ImproveCareNow, my wish is that they will see this Network as a glimmer of hope in what is most likely a very dark place, and ultimately that they will want to get more involved.

 

Through the icy grip of winter, Keri and Parker continued coming to the Children’s Hospital every 8 weeks for infusions. During one of these otherwise uneventful visits, Keri asked about becoming more involved with Parker’s care. Although this question is short in length and easily rolls off the tongue, I feel it is one of the most powerful questions a family can ask. That uneventful visit ultimately lead to one of the most engaging and empowering conversations and relationships that either of us had experienced in a long time. Personally, I don’t think either of us could have ever imagined what was waiting just around the corner. It wasn’t what we were expecting but was exactly what we were hoping for, and certainly something we weren’t going to say no too. This project with Keri has evolved over time and has been a huge learning experience for everyone, but we’re going to keep moving forward – together – one step at a time.

 

I look forward to sharing more with you as our relationship, and indeed our adventure, unfolds.


Communities are made up of smaller communities

Recently I shared several characteristics of communities that I believe are a key part of what makes ImproveCareNow more than an improvement Network, but a real community. One of the characteristics is that communities are made up of smaller communities.

 

In ImproveCareNow there is no shortage of smaller communities. The wonderful thing about some of these is that they have developed organically. For example, if you are a physician, nurse, parent, dietitian, improvement coordinator, or social worker, you are now part of a small but vibrant community that includes others in that same role. Members of these groups help on-board and mentor each other, take on small projects that help the whole Network focus on issues related to IBD care that might be overlooked by other roles, and provide a social support system that helps make each individual’s ImproveCareNow journey just a little bit more inclusive and fun.

 

Many of these small communities emerged from the interest, motivation, ideas, and leadership of their members. They are now largely self-driven and are even beginning to branch out in inter-community collaborations as a result of a “project pitch” session at our Spring Community Conference. There are also groups of like-minded people who have common interests and want to take on a project together, small committees that form to address a specific issue, and groups of people working together to plan aspects of our webinars and Community Conferences.

 

Some of our other smaller communities have been developed by design. In ImproveCareNow we talk a lot about our “Learning Labs”, which are small groups of ICN care centers with similar characteristics like size or organizational structure. Learning Labs enable centers to work more closely together to catalyze improvement and—perhaps more importantly—maintain that “small town” feeling that is such an important ingredient in our Network.

 

Why did we decide it was important to create Learning Labs? Back in 2008, there were eight ICN care centers. Everyone knew one another, all were aware of the projects that other centers were working on, the volume of messages on our listerv was not overwhelming, and our monthly webinars were full of lively, uninhibited conversation. Sharing was easy and the conversations were manageable; I like to say that we didn’t need the “mute” button on our webinars.

 

Mute button on phone

 

But as we grew these conversations became harder to manage; the background noise from many clinical settings was more distracting, the volume of e-mails in which centers shared updates and ideas was becoming frustrating to our participants, and there were more faces and names to remember. As a result, ICN leadership found ourselves doing more talking and the ICN care center teams doing more listening and less teaching and responding. Literally and figuratively, the Network was getting noisy and quiet at the same time. The most concerning side-effect was that big ideas that needed to be shared were getting drowned out by the noise—from a nurse who didn’t want to speak up on a large conference call to a parent partner who had a great idea but was concerned about putting it out there for the whole Network to see. It became challenging to maintain our ability to collaborate and share seamlessly. So we decided to try breaking out into smaller groups – much like we do during our Community Conferences – to increase our capacity for active and meaningful participation.

 

And so the ImproveCareNow Learning Labs were born.

 

Learning Labs as a Layer of Influence - Picturing a Red OnionToday we have seven Learning Labs. Each lab is guided by an assigned quality improvement coach and meets via webinar every other month to share lessons learned from quality improvement projects, share and discuss their center-specific data and outcomes, and develop ideas for collaboration. The labs spend time working together and sharing their progress at our Community Conferences; and they review written summaries of the best quality improvement ideas and barriers taking place within their Learning Lab on a regular basis so they can identify ways to accelerate their progress as a group.

 

We apply quality improvement principles to everything we do in ImproveCareNow, including testing changes and observing the results to determine whether they result in an improvement. The same is true for our Learning Lab model. What have we observed about the Learning Labs so far? We have seen stronger relationships form in these groups and have seen centers that would not previously have collaborated share ideas and launch projects together. We have seen nurses, improvement coordinators, and patient and parent partners speak up and teach on Learning Lab calls in ways they were not previously comfortable doing. The Learning Labs have also helped our leadership team achieve some key community-building goals:

 

A listing of the things we want people to be able to do as part of our commonsThe Learning Labs have become a fun and meaningful part of the ImproveCareNow journey. But there is so much more to learn about their impact on our centers, our Network outcomes, and on the participant experience. And knowing this community, they will look very different two years from now than they do today!

 

I am hoping that readers from our ImproveCareNow centers will share their experience with being in Learning Labs in the comments section below. How have they enhanced your experience? How would you change them for the better?


Communities take risks together.

I am writing this having just returned from several whirlwind days in Chicago at the first ever ImproveCareNow Community Conference. The ImproveCareNow Network has come together in person twice a year for seven years, but this was the first time this gathering was not called a Learning Session—the traditional Quality Improvement Collaborative term for in-person meetings. We changed the name for several reasons, the most important being that ImproveCareNow is now indeed a community. Here are some reasons why:

 

ImproveCareNow is a community

 

We have each of these things in ImproveCareNow and in future LOOP posts I will share examples of each. But one that I didn’t list,which became very clear to me at the conference, is that the best communities take risks together. I want to share a bit more about that here.

 

One of our conference goals was to brainstorm new interventions—in QI-speak, “changes to test,” - that will help us get even more kids with Crohn's disease and ulcerative colitis into remission. Prior to the conference, we developed a new list of key drivers—or focus areas—that we thought were most important to improvement. Now it was time to crowd-source the best ideas for interventions to tackle in each area. This tends to be the most fun part of the process!ImproveCareNow Key Driver Diagram with Primary Drivers and Space for new InterventionsThe ImproveCareNow Network has developed interventions together before. But this time, we wanted to make sure our incredible diversity and stakeholder engagement was really reflected in these new interventions. In the weeks leading up to the conference, each center interviewed patients and parents to get input on challenges and opportunities in each Key Driver area. In doing so, they opened themselves up to a variety of feedback; I know this felt risky to some centers.

 

Pre-work from the Spring 2015 ImproveCareNow Community Conference: Learning from Patients and ParentsBut as a community we took the risk together. Prior to the conference, nearly all of our 254 participants chose the three Key Drivers that most interested them. Once we received their choices, we put together small groups (6-9 people) that were as diverse as possible-blending people from different centers and with most groups including at least one patient, one parent, and others from several clinical roles. Planning this felt risky even as it felt like the right thing to do. Would people want to spend almost two hours of valuable conference time in an informal exercise with people outside of their peer groups? Would lone parents and patient at the tables feel overwhelmed, ignored, or vulnerable? Would conversations stall with the minutes ticking by slowly?

 

It ended up being a risk well worth taking. Between 2:00 pm and 4:30 pm on Saturday the low, quiet, steady buzz of conversation eased all of my concerns about people diving in and learning with those very different from themselves. Many observers noted that as  groups tackled the provided questions, the first thing they did was turn to the parent or patient at the table—deferring to their expertise. When each of the three 40-minute discussion periods ended, we worked harder than expected to get each group to wrap up and move to their next tables. And the notes that were shared—and will guide our work in the months and years ahead—are full of some of the richest, most diverse insights I’ve seen in my quality improvement career.

 

Example of Notes from the Small Group Discussions about ImproveCareNow Key Drivers and InterventionsWe work hard to make sure all participants in this community have the quality improvement structure, skills, and tools to achieve their goals. Even more important is making sure the right centers and people connect so they can do more together than alone. We foster this online on our ICN Exchange knowledge commons, on monthly webinars, and at our Community Conferences. Admittedly, this gets a bit more challenging as we grow and we don’t always get it right. But what these collaboration sessions showed me is that community members desperately want to keep connecting across roles and centers and that they embrace the expertise of everyone at the table. They are building their own momentum and will continue to do so even as we get bigger and push our network infrastructure to keep up. So thank you to the ImproveCareNow community for taking risks together, leaving roles and titles aside, and creating a better today and tomorrow for and with kids with IBD.


This is not goodbye.

Samantha Kennedy - outgoing Patient Advisory Council ("Pack") Co-Chair - is heading off to medical school in the Fall. In an inspirational message to Community Conference attendees - and indeed the whole ImproveCareNow Community - she thanks everyone for working within ImproveCareNow and for believing we can make a difference together. And she reminds us that our work (with patients specifically, and in general) may not be easy or quick or tidy, but 'it is the future, and we need to be the same sort of brave you ask patients to be as we pave that road.'


Sami's words are inspiration on-tap. Enjoy!

 

 

Samantha KennedyThis is not a goodbye.

 

Yes, I will be a student at Cooper Medical School in the fall. Yes, Jennie and I are transitioning the Patient Advisory Council into the hands of wiser, brighter, and as it so happens, younger colleagues. Yet, this is not a goodbye. I have little doubt you will agree: once you are a part of ImproveCareNow, you are always part of ImproveCareNow. As I enter medical school, I question how I can best serve as both a patient advocate and a medical student. I know only this for certain: I cannot imagine practicing in a system without ImproveCareNow and similar networks I hope will be just as successful for other conditions. We are not only creating health for kids with inflammatory bowel diseases; this is making the whole system healthier.

 

By name, we are a curriculum. We are a learning health network, a network – learning – together. I think it is easy to forget what that means - that we’re all students. If I have been brought up through the education system correctly, as I hope I have as a soon-to-be-graduating senior, being a student is not about getting everything right every time. Students try. Students revise. Students experience. Students have open and engaged minds that recognize success not as a thing but as a method. We are students. We are a learning health network.

 

When I first started co-chairing the PAC, I really strongly believed we needed to build a model framework for the engagement of patients in a learning health network. Jennie and I took the PAC and restructured it into task forces. We are distributing leadership. We are increasing intra-PAC participation. We are concentrating our resources on developing sustainable task forces, on developing leaders. We are increasing our collaboration with your care centers throughout the network, finding ways we can help each other. We are trying to foster and amplify the voices of not only PAC members, but patients throughout the network. We are establishing a project management structure. We are clarifying guidelines for what active membership means. We are piloting a recruitment program. We are PDSA-ing what ideal patient engagement here at Community Conferences should resemble.

 

I do not like how those sentences begin. “We are” as a phrase signifies something that is ongoing, not something that is done. As students, researchers, and leaders, we like progress and conclusions. It can feel to me that some of the work we are engaging in is continuing indefinitely.

 

In our case, however, “we are” is a phrase of success. We are lasting. We are continuing. We are making changes, which lead to other changes, hence prompting more changes.
We are changing the paradigm. In 2013, the Patient Advisory Council was a Facebook group. Today, we are present on multiple network-wide communication platforms and building a presence within care centers. In 2013, we were trying to fit into interventions, to carve out corners and spaces and places we could fit. Today, we are co-creating our own innovations; you are allowing us to co-create yours because you see the value in that. We are challenging the paradigm of how patients and clinicians should interact. In 2013, patients and parents were a minority here. Today, we are here in force. We are fifteen patients. Fifty percent of the PAC is here this weekend. That has never happened before. In 2013, we were acquaintances, colleagues. Today, I call many of you friends and mentors - we talk about mentoring so often here just in the peer-to-peer patient sense, and that is a huge deal, but we are a community of mentors. I don’t know if we recognize that explicitly enough. We are learning in a network, we are learning not only from each other but with each other.

 

Very rarely will our work end with a hard stop, but that would be the wrong measure by which to judge ourselves and our success. A hard stop would only indicate failure, that we have stopped approaching barriers creatively and stopped challenging ourselves, so that we can go no further. To be a learning health network, I believe we are held to the same standards as all ideal students. We try and we do not give up, even when we want to, even when our work feels tedious, even when we feel as if we are is not enough, even when we feel as if we are achieving little. If we measure ourselves by growth and not an endpoint, we see ourselves as a community in a clearer light.

 

We are ImproveCareNow. I am ImproveCareNow, and I am really enthusiastically proud of that. I cannot wait to carry that to Cooper with me and beyond and see where it takes all of us. Thank you for working within ImproveCareNow, and for believing that we make a difference together. Please go home and believe in your own patients and believe they can help you go further. It may not be easy or quick or tidy - like some of us really like - but it is the future, and we need to be the same sort of brave you ask patients to be as we pave that road.

 

If we stop believing patients and families matter in care, our magic as a collaborative will be lost. We celebrate our successes not because failures do not happen, but because when we keep trying and trying and trying, we succeed. It may feel like magic, but it is we are just people – believing –together.


Inspiration on tap - Jennie's Speech

Out of all the talks at the ImproveCareNow Spring 2015 Community Conference none made my heart beat a little faster quite like those delivered by Patient Advisory Council Co-chairs Sami Kennedy and Jennie David. The ability of these two ladies to shine a light directly at the heart and soul of ImproveCareNow is uncanny and uplifting. I challenge anyone reading this, Jennie's speech, to not break into a face-splitting grin (and/or run right out to change the world).

 

For anyone momentarily struggling with the thankless monotony of changing the healthcare system - I would prescribe the following: read a speech at bedtime and resume improving care now in the morning. Repeat as needed for maximum benefit.

 

They're a bit long so I've shared Jennie's speech below and will share Sami's in a separate post. Enjoy!

 

 

 

 

 

Jennie DavidThere is a cold tradition in medicine of an unaccommodating hierarchy, where the doctor is installed as the superior and the patient as the inferior. Under the mechanical demeanor of navigating such medical appointments, the whole thing – being exclusively a patient or a doctor, sick or healthy, needing or giving – seems ridiculous and illogical. Outside the sanitized walls of the hospital, I am a person complete with hopes and fears, and yet inside a hospital room – moreover, on an exam table – I am a specimen of my disease, a list of medications, a compilation of surgical scars. There’s a marked lack of apologies or prerequisites for doctors to perform examinations, ask invading and uncomfortable questions, and inflexibly dictate treatment, the flimsy but bold idea that it was all just ‘good business’ woven throughout it all.

 


I fought against this notion of paternalistic care throughout my pediatric care, routinely clashing with my doctor, the tense encounters punctuated by his passive aggressive sighs and sometimes me crying. I believed in the idea of doctors, patients, and parents working together, but it was much like a wish over birthday candles than anything I knew existed in reality. I kept this starry-eyed but unrealized medical vision in mind, and was consistently underwhelmed and disappointed in medical care that failed to detect my soul within my diseased body as the years swept by.

 


And then I – quite literally – stumbled across ImproveCareNow. Admittedly, I was enchanted with notion of such a collaborative network, but it somehow seemed too saccharine, too futuristic, too implausible. Having been a patient advocate for several years before discovering ICN, I was used to fulfilling the token patient role, saying token patient things, and – ultimately – doing the limited token patient things. But there is nothing token, ordinary, or suffocating about being a patient advocate within this network. This network is filled with sincerity, generosity, creativity, curiosity, and a desperate and passionate drive to improve things right this very moment for children and families living with IBD. The insatiable appetite for research, quality improvement, and innovative collaborations was infectious, and – while I can remember the extensive exhaustion after my first Learning Session – what I remember more is my heart racing with excitement realizing the remarkable gravity the network can have on pediatric IBD.

 


New traditions began to solidify: being asked for my opinion by established researchers and the allowance of a pause to actually absorb and respect my answer, the verbal and instrumental encouragement to actualize projects I’d dreamt of, being on a first name basis with clinicians I was so starry-eyed around that I had to force myself not to ask for autographs on manuscripts, and having an undisputedly important place at the table in the conversation for the evolution of quality, patient-centered, collaborative care. I also have to acknowledge the wealth of community-driven traditions: suitcases packed to the brim with candy, repurposing Taylor Swift’s “We’re Never Ever Getting Back Together” as an ode to my long lost colon, and corralling clinicians to take pictures with Flat Jennie.

 


The words “thank you” will never be enough, and I know that, and wish I could come up with some brilliantly poetic phrase to aptly articulate my profound, profound, profound gratitude. I am thankful for the collective kindness of everyone in this room, the extraordinary opportunities that have been so undeservedly yet continually offered, the patience, humility, and willingness to listen to my ideas and experiences, the faith that has been loaned to allow projects to develop, and the utterly bottomless generosity afforded to me that I have been so unimaginably honored to have received.

 


“Thank you” is not enough, in part because it is not, in and of itself, action. Instead, I will promise this: I promise to embody the spirit of ICN as I move throughout my psychology doctorate training, when I enter the field of pediatric psychology as a professional, and with every human being I encounter, be it in the hospital or on a street corner. I promise to play a role in the cultural revolution that is innovative collaborative care, to be proud and firm in constructing the values-informed medical traditions of tomorrow, and to help set the world on fire with the formidable (onerous) but righteous idea that clinicians, patients, and parents should stand shoulder to shoulder in medical care.

 


I have seen and felt the unparalleled power of this network, I have witnessed how kindness changes the world, I have been so humbled, fortified, and impassioned by sharing the vision of collaborative, personalized, and humanistic medicine with all of you. It is a cultural revolution, it is a new tradition, and it is something I am so very, very, very honored to have been a part of.


The PAC Tweets #ICNCC15s

A record seven gutsy patient advocates in ICN's Patient Advisory Council - PAC, "pack" - attended the Community Conference. We tweeted live at #ICNCC15s all the way through - so please check out our feed!!

The Patient Voice is already strong on Twitter. For a week leading up to the conference, Alex, Bianca, Christian, Isabelle, Jennie, Randa, and I tweeted once a day to provide a glimpse into how IBD factors (or does not factor, in some cases) into our days. We made special reference to the key drivers of remission took center stage at the Community Conference and form the foundation of ImproveCareNow's work:

7 Key Drivers of Remission



Jennie described challenges that impede her access to and communication with her doctor.

Screen Shot 2015-03-26 at 11.30.29 AMRanda described how proactive care allowed her to take better control of her ulcerative colitis.

Screen Shot 2015-03-26 at 11.18.23 AM Alex questioned why it can be so hard to find the right medication - and shared his optimism that more accurate diagnoses and research can change the game!

Screen Shot 2015-03-26 at 11.17.49 AM

Bianca shared how less-than-optimal nutritional intake has impacted her - and made it difficult for her to grow at the same rate as her peers.

Screen Shot 2015-03-26 at 11.27.27 AM Isabelle emphasized the relevance of compassionate care to psychosocial health.

Screen Shot 2015-03-26 at 11.31.39 AMFinally, Christian described how a food journal has improved his ability to self-manage his IBD.

Screen Shot 2015-03-26 at 11.11.38 AMAnd, I shared how my pill case makes it easier for me to stay adherent at college and on-the-go!

Screen Shot 2015-03-26 at 11.34.53 AM We hope you'll join the conversation on Twitter now and in the future!

 


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.




An update from the Patient Priorities team

ImproveCareNow has partnered with Patient PrioritiesThe IBD Learning Priorities project was designed to give young adults, parents and clinicians in the IBD community a chance to ask the questions they felt were most important in the treatment of IBD. Using an online survey, families and clinicians submitted over 200 questions - or 'learning objectives'. Common themes included diet, diagnosis and individual care needs.

 

 

 

These questions will help us further understand what information those who are impacted by IBD really need. We expect to find some of these questions already have answers. And where there there is good research to answer these common questions, ImproveCareNow will work to develop and share this knowledge through family-centered tools and resources. Those questions that do not have complete answers will help prioritize future pediatric IBD research.

 

Below are a few examples of the learning objectives received from families and clinicians like you!




    • Beyond enteral therapy, what is the role of diet in the maintenance of remission in IBD?

 

    • Is 6mp safe? Will it hurt her liver anymore than it already is?

 

    • We need more data on dual therapy with thiopurines and methotrexate. Specifically, will patients do better if these agents are started before starting biologics rather than starting them at the same time?



Stay connected with ImproveCareNow by joining our CIRCLE so we can send you updates on the continued progress of these important community-developed learning objectives and ensure you have access to the family-centered tools and information that are developed in response to some of these questions.


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.

 

Buzzy was developed by a physician and pain researcher (www.buzzy4shots.com).  It works on the Gate Control Theory of Pain. Its design confuses the nerves with both temperature and vibration. The theory is that this distracts from the injection pain and interrupts the neural pain pathways. Using Buzzy has reduced our shot time to 2-3 minutes and has greatly reduced the family stress and anxiety associated with this experience. I knew that we needed to make Buzzy accessible to all of our patients who receive injections or infusions to help with injection pain and needle phobia.  With a price tag of $40, our care team recognized that this purchase could be a burden on families already dealing with high medical costs.

 

Our Parent Mentoring Group at Riley Hospital for Children did research using the ICN database to determine the number of our patients that were using injections and infusions as their primary therapy.  We collected data from the infusion nurses and Child Life specialists that had been successfully using Buzzy in the hospital.  Armed with this data and personal experience, we prepared a grant that we submitted to the Women for Riley, a philanthropic group of women that support the Riley Hospital and Foundation.  Our group was then selected to present our grant to the review board.  In late February, we received word that we were awarded the grant to purchase 150 Deluxe Buzzy Kits to distribute to our patients.

 

Over the next year, we will be distributing these kits to this target group of patients and any new patients that start on infusions or injections.  We plan on surveying the recipients to gauge the effectiveness of this device. Our hope is that Buzzy will improve the time spent administering injections, lower family frustration, and reduce the overall pain of the injection. These kids go through so many procedures and experience so much pain with their diseases.  It is wonderful to have a small tool to help in a big way.

 

[Editor’s Note: This story was shared by Liz D - a 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.]


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