ImproveCareNow Patients_&_families


Before I Was Diagnosed

On behalf of the Patient Advisory Council, we would like to introduce you to Josh. Josh is going to be sharing some comics/animation as his schedule allows, and we are very excited that he has forwarded us his first comic (and a link to an amazing video he created). Enjoy!

Sami + Jennie


 

Hi! I'm Josh Weisbrod, an animator and comic artist. Currently I'm an MFA candidate in USC's animation program.


Last year I made an animated film about my diagnosis with Crohn's disease (available to view at https://vimeo.com/81004804). But there were an arduous several years leading up to my colonoscopy in Medical Adventure Power!! Here is the story of the horrible Hamburger Helper meals and frequent trips to the bathroom that led me to the first of my (now 7) colonoscopies:

Josh Weisbrod is an animator and comic artist. This is his comic illustrating the time before he was diagnosed with Crohn's disease.


Livsuppgift.

 

livsuppgift-1.jpg

I recently traveled to Sweden and had the opportunity to talk to many people about the work that ICN and C3N are doing. Now here in the US, I am known for talking at length about this work, all the time, to whomever will listen. But sometimes it takes being far removed from it for a few days—and seeing the reaction of a completely new community—to not only gain a deeper understanding of what we are building together but also to articulate it in ways I hadn’t before. In other words, I got to look in from the outside.


DIGMA: Group Medical Appointments

In the decade I have lived with Crohn’s Disease, I have steadfastly steered clear of support groups. It always seemed as though I were resigned to a couple of options in talking about my Crohn’s: 1) stick with my private medical appointment with only my parents and doctor, or 2) cautiously venture into the mysterious world of support groups. I exclusively favored the first option, and carefully built my community of friends with IBD a la patient advocacy and volunteering. And while that strategy worked for me, I only recently realized there’s another way.When Sami and I were invited to participate in the Children’s Hospital of The King’s Daughters (“CHKD”) team’s demonstration of the group medical appointment (better known in the medical community as Drop-In Group Medical Appointments, “DIGMA”) at the ImproveCareNow Spring Learning Session, we were happy to help. We were admittedly unaware of how a DIGMA session worked; and arguably incredibly naïve about the feasibility and sustainability of a model that – at first glance – seemed to be the very kind of ooey-gooey-woe-is-me support group we had intentionally evaded.

 

Children's Hospital of The King's Daughters at the Spring 2014 Learning Session during their DIGMA demoChampioned by the passionate team at CHKD in Norfolk, Virginia, the DIGMA model has enjoyed strong support from clinicians and families alike. Dr. Marc Tsou was introduced to the idea in the late 90’s when a parent gave him an article about the group model structure, about which he says, “It seemed to make so much sense. I thought of how many times in the day I’d say the same medical information to several families. Say that information six times, how inefficient, then think about how much that group appointment concept makes sense.” Dr. Tsou saw an opportunity to meaningfully build on the clinic’s collaborative culture; “Elements were there, the right type of people and group. The doctors were the ones who said we’ve got to do this, we’ve got to do this, the time was right, it was almost fate.” Fueled by his fearless nurse, Terri, Dr. Tsou and the CHKD team set about bringing the DIGMA model to their IBD families.

 

The first step was reaching out to a variety of clinicians – such as dieticians and social workers – to ensure that the group visits did not just include patients & families, but also a group of diversified care providers. After sending out an email to potential clinician participants, positive responses began to rush in. “For the most part all responded and had someone to come and participate,” Terri says. “Everybody was super receptive to it, they’ve showed up at every one since.”

 

Annette Kulzer, a mom of three boys including 16-year-old Kolin who lives with IBD, has been instrumental in running the group model appointments. “As a parent,” she says. “It opens doors to meet people we would have not met. If we were in another setting, we wouldn’t hear those stories.” An early adopter and believer in the DIGMA model, Annette has regularly provided a parent’s perspective into how the group appointments run. For example, after a group appointment with female and male patients, Annette suggested having separate groups for each gender and for different ages ranges to encourage comfort and participation. Annette and Kolin emphasize the sincerity of Dr. Tsou’s malleability in running the group sessions, and they always appreciate the weight their feedback holds.

 

In addition to the accessibility to a variety of clinicians and retaining certain elements of the traditional solo medical appointment (e.g., a one-on-one physical exam), the DIGMA model had a surprising but welcome impact; it provided novel insight for patients, parents, and clinicians alike through storytelling. Annette remembers a teenage patient who recounted having great difficulty taking the bus to sporting events with her teammates, since she was worried she might urgently need to use the bathroom. The story challenged Annette to reconsider Kolin’s hesitation to ride with his teammates to a game, as she came to understand that her son – who rarely complained – shared a similar fear that had gone unspoken.

 

Jill, CHKD’s social worker agrees that sharing stories can be incredibly eye-opening, and says, “It’s very, very different when you can look into the face of another mom or another dad or another kid, and say I understand this. Okay here’s somebody like me, they’re doing alright.” Dr. Tsou adds, “There was one mom who broke down into tears, she got very emotional, you think gee these sessions no one will share very much, but really they’re sharing their souls and baring their deepest fears. People might be skeptical but it really happens, but that’s super gratifying, a bit surprising, and confirmed to us that we’re on to something and something that deserves the attention and energy to keep it going.” When asked about group session attendees who were unsure at first, Annette says, “We’ve had many patients and parents who come in resistant, but within 15 minutes they’ve had the Kool-Aid.”

 

The group session can also be liberating for patients, who perhaps fear that IBD will be an “albatross around their neck for the rest of their lives.” Kolin enthusiastically agrees, adding, “Telling people what you’re going through helps a lot.” Positive and on target support grows organically from the patient-driven and clinician-facilitated model, and Kolin says, “You’re going to get so much out of it.”

 

While the organizational burden was heavy at the beginning, the team has happily tackled logistical issues to provide this innovative practice to their patients. Dr. Tsou explains, “The group appointment allows for so much more sharing of feelings, fears, and that’s really what so many families want and need and it allows it in the framework of still providing care. We’ve all had to learn a little different way of doing it.” Terri adds, “No harm in trying something, and I would guarantee that if others tried this model, they wouldn’t go back, it really does impact patients and families.”

 

But the potential of the DIGMA model doesn’t stop there: the team sees practical applications to rural communities (i.e., being able to run a group session in a rural community to maximize patients who can be seen), and across medical specialties. Dr. Tsou says, “I think it’s going to be more mainstreamed. It is the way medicine will be practiced in the future, we’re at the leading edge of it, which is cool.” Kolin adds, “I really want it to spread. I was really skeptical of it at first, but I really do enjoy the DIGMA model.”

 

A group medical appointment is, at its core, a treasure chest for patients, families, and clinicians; the ability to offer a holistic, patient-centered, and team-approach to pediatric care is innovative and vital to the collaborative and transparent culture championed by ImproveCareNow. The passion, integrity, and dedication the CHKD team has for optimizing chronic illness care is not only evident, but most importantly completely contagious. “We’re all passionate about our patients,” says Terri. “We were born to do this, it’s been really wonderful. Everyone had the spirit, it was right for us.”

 

 Jennie


A Healthy Meal Plan for IBD

In 2014, a question came to the ImproveCareNow Registered Dietitian (RD) group about how to choose foods that can promote healthy weight loss and control hunger without causing a flare of gastrointestinal (GI) symptoms. By answering questions from our community, the RD group aims to provide valuable tools and information for patients and families to better understand the role of nutrition in managing Inflammatory Bowel Disease (IBD). The RD group encourages partnerships between patients and their care teams, including dietitians, so together they can design a dietary plan to avoid food-related complications from IBD and promote healthy weight maintenance.


Sometimes you don’t know what you’ve got till it’s gone…


The announcement from Daniel McLinden that the ICN Exchange was back up.

 

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:

 

Children's Hospital of The King's Daughters' DIGMA model demo video from the Spring 2014 Learning SessionImproveCareNow 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!
Call for clinicians to sign up for a focus group to dicuss what has worked and what hasn't worked when trying to get patients and families involved in QI work at ImproveCareNow centers.

 

Opportunities that highlight how much we really, really want and need to learn from each other so we can collaborate even better!

 

The first ever announcement for a ImproveCareNow Dietician webinar Multidisciplinary partners, like the RD group, are staying connected with each other and getting organized so they can The new online 90 day goals tracker for ImproveCareNow centers to track and monitor their Improvement project goals and progress quarterlytake 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.

 

The Parent Working Group of ImproveCareNow is now setting and working on 90 Day Goals and in the spirit of transparency is sharing them with the whole NetworkParent Partners are setting their 90 day goals, tracking their progress and keeping the Network informed!The Patient Advisory Council request to ImproveCareNow participants to co-produce an Ostomy Toolkit for patients with permenant or temporary ostomies.

 

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.


When working for becomes working with...

Look on Twitter, Facebook, LinkedIn, and many other social media outlets over the past few weeks, and ImproveCareNow is all over the place. Many quotes about “parents as partners,” “real patient engagement,” and “amazing collaboration.” It’s fantastic to see the buzz we are generating. It’s huge, and important, and feels like it will catalyze many others who are working on similar efforts to jump in and do the same. We have a lot to teach now, even as we learn. It’s helping us achieve health outcomes we did not think possible and will probably help others do the same.

 

But what does this mean at the micro level, in the day-to-day shuffle (and sometimes tornado!) of getting the real work of running this complicated Network done? I don’t pretend not to realize that the care teams out there across in our 65 centers are doing the hard work – planning visits in advance, getting to know our new automated reporting tools, and trying to fit this all into their already complex clinic workflows. They (with the families they serve) are real heroes in this Network. But a lot of work also goes on at the ImproveCareNow leadership and staff levels to make it all possible. And I consider myself very fortunate to be in the position, as part of this team, where I get to see how many of the pieces fit together, and witness the not so subtle shift in what it means to “work for ImproveCareNow.”

 

I’m going to use our recently completed Spring Learning Session as an example. Even just one year ago, planning the Learning Session meant that the core Quality Improvement (QI) project team and I looked at Network priorities and recent lessons learned, identified who would do a good job speaking about these things, and pieced together what usually turned out to be a good agenda for a good meeting. Parents and patients were starting to attend Learning Sessions, but were on the fringes and some would tell you they spent their weekend trying to figure out where they fit in. We felt good about including them, but we didn’t feel good about not understanding quite how we all fit together.

 

What a difference a year can make! In planning for the Spring 2014 Learning Session I found myself watching as unprecedented collaborations between clinicians and parents, data managers and parents, took place across the miles. In one instance, what began as an offhand comment about the potential for a parent panel at the Learning Session, which would address how centers can better engage families in QI work, became a series of many, many emails between a clinician, several parents, and ImproveCareNow staff. Over three months we worked together to co-design the objectives and draft a call-to-action that the panel could deliver to the Network. The result was one of the highlights of this Learning Session.

 

In another instance, a parent asked for permission to use Network remission data in his presentation—the kind of data that he knew could illustrate the ImproveCareNow story best. Again, I found myself watching an amazing email discussion unfold between the parent, our ImproveCareNow data manager and the centers that agreed to have their data displayed in a novel way by a parent. This kind of conversation about data (“send me that,” “no, let’s try it this way,” “yes, that will have the most impact”) happens all the time within ImproveCareNow. But until now, had been limited to QI, data management, communications, and IT staff.

 

I used to believe ImproveCareNow staff and leadership needed to work for the clinicians, parents, patients and others that make up this Network…they were partners, but also customers and we had to make it all work well for them. I now realize it’s all about working with them so they can help us get things right. So yes, I work with the many care teams who are providing more proactive and reliable medical, nursing, nutritional, social work, and psychological support to pediatric patients with IBD. But I also work with Justin, Jamie, Sami, JenJo, Jennie, Tania, Beth, David, and many, many others who have ideas and experiences that also need to be integrated into this learning health system.

 

Today these patient and parent partners email me just as any of my other coworkers would. They email me during the work day, but also at 11:00 PM and 4:00 AM, during their time. They do so despite having busy full-time jobs inside or outside of their homes and despite the extra time they already devote to caring for children with a chronic illness. They share their ideas, ask for my input, worry about pushing us too fast (I often hear: “we’re not going to get you all fired, are we?”), worry about not pushing us fast enough, and ask how my kids are doing. I push them to post things on our internal knowledge-sharing platform, the ICN Exchange, just like I push the care centers. They are creating 90-day goals to focus and guide their work just like the care centers.  Most of all, they are helping us walk together into a new model for running this Network, understanding we won’t get it right every time, caring about the impact on others who are new to this level of partnership too, and above all, making sure we all stay connected to what this work is really about:

 

 

 


Parents as partners in care

One of the joys of working with the ImproveCareNow Network is seeing the results of co-production introduced more broadly to a learning community. At the same time, communicating what this is all about can be tricky – the idea that patients and clinicians can actually be partners (in health, care, improvement, and research) - is such a paradigm shift.  In fomenting this culture change, we have come to a deep appreciation of story-telling, art, and other creative expression as a powerful way of communicating beyond the hard data. That's why it's so breathtaking when we see this come along:


https://twitter.com/michaelseid11/status/448458248627027969

Justin, who made this video, is a parent in the ImproveCareNow network.  Collaborating with other parents and with some (minor) input from ImproveCareNow staff, he distills, in less than 90 seconds, this movement to its essence so much better than my feeble words could do.


Drum Roll Please...

In only a couple of days, there will be a flurry of texting between Sami and I, sending pictures of packing and potential Learning Session outfits back and forth. Yesterday I sent Sami a few pictures of a sample outfit, to which she instantly texted back, “I like it!! It looks professional and cute!” (Note: said outfit was, indeed, packed immediately)

 

Last night I was pouring over an email with the Learning Session agenda, clicking on the various hyperlinks for teasers about the plethora of exciting things to come. One link sent me to pictures posted on the ICN Exchange of various ImproveCareNow teams; I chuckled at the Boston Children’s Hospital team’s faces photo-shopped onto duck statues (a la Make Way for Ducklings), the Children’s Healthcare of Atlanta team’s matching t-shirts, the MassGeneral Hospital for Children team’s “We love ICN” sign (complete with a full GI tract doodle), and – finally – the ICN Exchange “Team Oscar Selfie” (a gutsier version of Ellen’s now infamous Oscar celebrity selfie).

 

Nothing like previewing pictures of the big-hearted, gutsy-humored, determined-with-all-their-might-to-change-chronic-illness-care care center teams to get me excited about the Spring Learning Session!

 

Spring 2014 ImproveCareNow Learning Session

 

Sami and I have tried (and, notably, failed) at accurately articulating the pure excitement, joy, motivation, and positive energy that’s simply contagious at the Learning Session. Here in text, it sounds cheesy and like ImproveCareNow is prodding us to write down such ooey-gooey sentiments. But, let me reassure you on behalf of Sami and myself, our ooey-gooey praise is exceedingly well-deserved and comes directly from our hearts (read: guts).

 

In addition to the undeniable culture of optimism and innovative thinking, there are always particular sessions we just cannot wait for. Following are the things we look forward to most at the Spring Learning Session:





    • PAC Reunion: The Learning Session is the one time when the PAC Leadership is able to brainstorm in-person (and also eat lots, and lots of candy!). We look forward to seeing each other face to face, and are always astonished by the amount of important work we get done in a couple of days. This Learning Session will be the first where our full PAC Leadership will be in attendance (PAC co-chairs - Jennie & Sami, and Patient Scholars - Katherine & Tyler) – we just can’t wait!!

 


    • QI Fundamentals: Sami and I stumbled upon this last year as we both arrived early, and were quickly enthralled with the phenomenal centers who are our newest family members in the network. This is a wonderful opportunity if you’re in need of some inspiration (note: by the end of the weekend, you’ll be bursting with inspiration!) or a Quality Improvement refresher, and is a fantastic way to meet upcoming superstars in the network.

 


    • Opening Reception: Here, there, and everywhere – the reception is filled with amazing people and is an awesome chance to network, socialize, and get the 411 on the network’s progress and innovations with the variety of poster presentations. Also, keep an eye out for some Patient Advisory Council members who will be reprising their roles interviewing reception attendees!

 


    • The Learning Health System Today and Tomorrow: The opening never fails to deliver in motivating every cell of every attendee, and – who are we kidding – we always love seeing Dr. Margolis and Dr. Colletti (and, if we’re lucky, they’ll coordinate their outfits!).

 


    • Lunch: Food, food, more food, and lots of networking! We always fill up with some nourishment and get the chance to meet new centers, parents, and the clinicians at various centers that we are humbled to call friends.

 


    • The Learning Health System, The Months Ahead: The closing is reliably the time when you will need a stash of tissues compliments of the remarkable speeches from parents and patients. After the excitement of the weekend and the endless research ideas and connections you’ve developed, the closing is a perfect opportunity to digest (yes, pun intended) the entire experience and head home with genuine motivation that you won’t soon forget.



We can’t wait for the collaboration, the innovation, the passion, the insight, and to continue to watch children and their families living with IBD receive better, and better holistic healthcare.

 

So pack your bags (or join us on Twitter and follow the Learning Session hashtag #ICNLS) and get excited – the Spring Learning Session is just around the corner!

 

Jennie + Sami


Sitting In It

Or "The Crystal Ball Method of Informed Consent"

Why didn’t I know how hard this was going to be?  When is it going to get better? Will it? Is it even worth continuing?’  I don’t know how much longer I can keep going, especially when I hear there isn’t an answer to this yet; my pain isn’t going away!’  As a child I felt that myself sometimes, and I think my patients feel that way sometimes, too.

 


Transitioning at Children's Mercy Hospital

When I was little, I had a lilac-purple colored bicycle. There were shiny streamers at the ends of the white handlebars, which would often catch the wind as I rode through a field near our house, my parents cheering and running behind me holding tight to the lip of the seat. Having gotten used to the stable comfort of riding my tricycle around our quiet suburban cul-de-sac, I remember feeling both terrified and thrilled at the expanse of the field and my ‘big girl’ two-wheeler. Learning to ride my bike – like most things in life – was a skill that required a lot of technical and emotional support from others, and a belief that I could do it.

 

A few months before I graduated high school at 17, I went to the hospital with my Mom for the so-called “transition appointment.” We had been sheltered and insulated in the pediatric world, full of pastel-colored murals, teddy bears, and bandages that were cut into heart shapes. The adult medical world was cryptic and distant – a new building, new doctors, new nurses, new everything. While everyone was perfectly polite, the transition appointment consisted of being told which adult doctor I was going to see and when/where I had to show up; there were no choices, no decisions, no questions. And there was no road-map for how to get from point A (pediatric care) to point B (adult care).

 

There are two important concepts that often get conflated: transition is the careful, premeditated, and inclusive process of educating and empowering an individual to be responsible for one’s health, while transfer is the physical change of moving to a new medical facility (e.g., pediatric to adult hospital). Transition is the meaningful process of gaining and growing skills like medical literacy, advocacy, adherence strategies, and so on. It requires a team of people (patient, parent, pediatric and adult doctors, nurses, etc.) working together to empower the patient. It’s the difference between learning to ride that little purple bike in a big field with lots of support versus just being given the bike with no guidance about how to use it.

 

According to Dr. Michele Maddux, a clinical psychologist at Children’s Mercy Hospital, who helped develop their transition program, Mercy’s efforts had previously involved transferring medical records and, “finding an adult provider, with significantly less focus on equipping adolescent patients with the tools and skills needed to successfully manage their health care needs.” Seeing this gap, Dr. Maddux and a dedicated transition task-force set out to create a holistic transition program that managed the clinical issues while taking lifestyle matters and family perspectives into account. They started by interviewing each of the pediatric gastroenterologists (GIs) on service to ensure physician engagement in the project and to capture their unique perspectives. They also created a GI roundtable and invited pediatric and adult GIs to have transparent conversations about transition. This resulted in a provider database and helped to dispel some of the myths that pediatric and adult GIs had about each other. The success of the roundtable and the transition task-force’s efforts culminated in the hiring of a transition coordinator and the development of a transition readiness screener for patients as well as educational materials for patients and families undergoing transition. The educational materials were vetted by Mercy’s general parent and teen advisory boards (i.e., not IBD specific) and by parents of children living with IBD.

 

Cue Jamie Hicks – a perfect fit into the role given her nursing background and a busy mom of three, including 10-year-old Colson who lives with Crohn’s. Prior to reviewing the transition materials, Jamie said, “[i]t simply wasn’t on my radar… I think of him growing up and how the disease will impact his future. But I never linked that to him taking over my ‘job’ as the manager of his health care.” Jamie praised the educational materials as “fantastic”, underscoring the importance of a defined direction and plan over guessing and uncertainty. Jamie’s main contributions were adjusting the material’s language, which she believes can have a large impact on how the information is received and understood by kids and families. According to Dr. Maddux, “Jamie brought a much needed patient/family voice to our materials that gave us a unique opportunity to craft our educational materials to meet the needs of families.”

 

Both Dr. Maddux and Jamie reiterate the vital importance of creating space for parents in research projects. Dr. Maddux pointed to the language and format changes as key edits that would have gone unaddressed without parent and patient engagement. Jamie addressed the critical role parents play as the people who most intimately understand their children beyond the clinic by helping to appropriately tailor educational materials and provide ‘behind the scenes’ information about children's motivations and worries. Similarly, they are both passionate about transition being relationship-based and starting as early as possible so the changes in medical responsibility are empowering and fitting for each child and familial situation.

 

We may not have a cure for IBD, but thanks to the insight and persistence of Dr. Maddux’s team and parents like Jamie, it is possible to implement a comprehensive, team-based transition program that prepares young patients with IBD to manage their own care. We can give our patients the encouragement, support, and information they need to ‘ride their bikes’ with strength and confidence.

 

After dozens of tries back in that field on my purple bicycle, I finally pushed off the ground, my feet finding the pedals and my eyes trained on the horizon, newly sturdy and sure of myself, and off I went pedaling across the field as my parents clapped and whistled. It hadn’t been easy, but I did it.

 

And together, we can make sure all of our kids can do it too.

 


← Previous  1  2    6  7  8  9  10  11  12  13  14    18  19  Next →

Built by Veracity Media on NationBuilder