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Designing a new way of CF Care - an update

Sunday, May 31, 2015

Last week I was privileged to attend the second CF Care Model of the Future meeting.  This project brings together 40+ clinicians, researchers, patients, caregivers and Cystic Fibrosis Foundation representatives charged with completely redesigning the way we do CF Care.  I thought I'd share about the work being done and where we are in the process.

Cindy George (RN and CFF representative), myself, Erin (a CF mom) and Emily (adult with CF) capture a picture of a friendship that has been created from hard work, difficult conversations and the sharing of lots of good ideas!


After our first CF Care Model of the Future meeting in January, we all split in to multiple groups to focus on improving different aspects of CF Care (e.g. "Quality Improvement and the Care Center Network", the "CF Registry", "Patient-Generated Health Information", "Community Integration", etc.) For four months, our respective work groups met weekly via phone and video chat to discuss the myriad areas of which CF Care is involved and dreamed up ways they might be improved.

Eight weeks in to our regular meetings, each of the groups submitted their ideas for the larger CF Care Model community to see.  In total, we came up with 77 different ideas for projects, improvements or programs that we believe could benefit the way we do CF Care.  These ideas are not complete but are certainly a good start to improving the system.


This is a list of just some of the 77 ideas presented at the CF Care Model of the Future Design Meeting.
Because this is the part that gets me super excited as a CF mom, here are just a few of the ideas that were dreamt up: a more patient-centered accreditation process for CF Care Centers, an online "exchange" where all CF stakeholders could share their ideas, documents, pictures, etc. as a way to share information and quality improvement projects, a patient and family research advisory committee, personalized CF treatment plans, crowdfunding for CF research, patient access to medical records, home health/mobile monitoring guide, a repository for de-identified N=1 study data that is readily accessible in the CF Registry, real-time search tools in the CF Registry, a virtual playbook that would allow CF patients to share the ways they have "hacked" the system to benefit their care, an online CF Dashboard that could provide all of a CF patient's or CF Clinician's data in one place, use of telemedicine, methodology and engagement standards across the Care Centers, patient and family quality improvement training, a collaborative quality improvement network, a mentoring program, etc.  (I could go on and on...but aren't those awesome!?)

 
At this in-person meeting, each of the work groups presented their one or two favorite ideas to the entire group.  It was really fun to see how well some of the ideas had been refined.

After presentations of just a few of the good ideas, everyone at the meeting was asked to rate (not rank) the ideas so that we could all get a better idea of what ideas the group believed we could begin to work on further first.

Every idea is a potentially good idea. No ideas have been thrown out or declined.  Some ideas were just moved up in order of easiest to implement and highest impact/potential to help the community the soonest.  Everyone knows time is of the essence.

Michael holds the microphone and shares data from our ideas.  The ideas that were ranked as having the highest impact but were also the easiest to implement now include: pre-visit planning, automated care management tools, a platform for efficient, effective and transparent knowledge, a pediatric to adult transition program co-designed by patients, caregivers, clinicians & coordinators, a collaborative QI network, CF-specific central IRB, transparent Center-level data sharing and a national CF Parent and Family Advisory Council Network.

A word of caution, the list above isn't necessarily what ideas is going to be created first.  But these are the ideas that will likely move towards further development and testing. 


CF patients are an integral part of our work.  Even though most all of them could not be present due to cross-infection issues, they were a very present voice in the room virtually.  I always always love hearing the voice of a CF patient.  Nobody cares more and has more at stake than they do.


One of the ways that we evaluated an idea was through the use of personas. Personas were fictional people who were created from real CF patients/stories.  The goal of the personas were to evaluate how an idea might benefit a CF person and the complications a CF person might have with engaging with that improvement.  Two really smart researchers who did this kind of stuff for a living did this for the CF Care Model project.  Here are just a few examples of the personas they came up with:


Every person has a story and lives within a system.  The use of fictional personas when creating CF Care helps everyone think through an idea from the perspective of someone battling the disease.


Throughout the presentation and ideation of new ideas, we were asked to consider which personas might benefit and mark this on our sheet.


Our tables were filled with all the essentials to a creative ideation session: candy, markers, post-its, and toys.  The bottle of hand sanitizer is pretty standard at CF functions (all those in the world of CF are aware of germs).  Microphones were at every seat so that Virtual participates joining us via webcam could hear the discussions.  The bottle of enzymes were for the CF empathy card:


Several times a day, someone would stand in front of the room and instruct our tables to use our CF Cards FOR Humanity.  These cards had on them small CF-related scenarios (either from the focus of a CF patient or a CF Clinician).  We were instructed to do what the cards suggested on them and answer the corresponding questions.  The goal was to learn to feel what it's like to be a CF patient.  Everyone felt these were very helpful in becoming more empathetic to an experience that is otherwise difficult to understand.


Most of our time was spent discussing where to go from this point in our work.  Usually there was a consensus.  But, at one point, the conversation became very tense as there was discussion and some disagreement on whether or not our measurable goal of the new CF Care Model was high enough and whether or not the system we are creating is revolutionary enough for CF Patients.  It became clear that despite our best efforts, we still have more work to do.  I am SO thankful for the CF patient who lead this discussion by expressing she did not feel this was good enough.  No one is ok with settling with simply "filling in gaps" in the current model.  We all agree that we must change the model completely.  Now that is exciting!

While it's likely that our CF Care Model global aim and goals may be strengthened, I did like the primary drivers that this system is being built under.  These primary drivers describe the kind of system we want.  We want a system that offers reliable, personalized, evidence-based timely care, provides whole health wellness for people & families living with CF, tends towards better value for care, includes a vibrant CF Community and Quality Improvement Network, encourages joyful work conditions for those providing care to people with CF and makes way for better, faster and cheaper research.


A lot of ideas were considered and evaluated.  Some of the ideas were presented in depth.  Some ideas were merely mentioned.  Goals were created for our team to consider.  Some of the goals were not lofty enough - is it adequate to say we are happy with a CF Care Model that increases life expectancy alone - or do we want more?  Is it good enough to set our goal to be a "normal" FEV1 and BMI for all or is that too low of a bar?  This is what we are currently considering.


One really interesting thing of the day was when this robot guy started rolling over to our table at lunch.  Apparently the robot is called a "Nomad" and is basically an iPad on wheels.  Our friend Dan, who is a CF patient who was attending the meeting virtually, was given the controls so that he could control the Nomad and come talk to our group (or any other group in the room he wanted).  The iPad had a microphone and speaker so we could hear him and he could hear us.  It was both very cool and freaky to experience.  I love how the CF Foundation is working hard to make the virtual experience the best it can be for CF patients.  This was the first time this technology has been used at the CF Foundation.  


At one point, Avonlea and Bennett made their debut at the meeting when Erin showed a video of CF children dancing to the song "Happy."  The goal of playing the song was to get everyone up for a physical activity and to remind us all why we are doing the work we are done.


Andreas, a CF dad from Sweden, and Arrica, from the Dartmouth Institute collaborate on CF Care.


Like at our last meeting, posters filled the room, hanging even on the doors, as we had multiple ideation sessions looking at how we can improve CF care.


Dr. Dasenbrook, a CF doc and Chris, a CF Foundation representative talk at their table during a lunch break.  Even during our breaks, we were most always talking about improving CF Care.


These three young women, who work for the C3N Project, are the rockstars of the meeting.  They were constantly behind the scenes taking care of the details and logistics throughout the meeting.  There are quite a few others who are equally amazing, including but not limited to, Sophia, George and Karen (not pictured).



Where do we go with good ideas that are ready to be put in place?  We will begin to prototype some ideas to hopefully begin putting them to the test.  Are they good ideas?  Will they work?  Do they help us do what we want them to do?


Even though some ideas will be better evaluated first, all of the ideas looked at more closely (new ideas will emerge; some ideas may be put on hold).  I love this picture of our design process.  Even though all good ideas will start out along a similar path, testing can cause ideas to take different paths.  It's important for all of us to be patient with the process.  (Doesn't this sound like the clinical trial process?)


Our meeting came to a close after 1.5 days of work together.  Even though the meeting is over, we will continue to work in our teams on moving the ideas from design to prototype to pilot to implementation. We have to remember we are not building a machine. We are creating a system.  Components will be individual and personalized, not one-size-fits-all.  We are trying to transform a system that provides best support to ALL people with CF, including healthy, sick, old, young, etc.

To continue to follow what's going on with the CF Care Model of the Future and/or to share your thoughts, feelings and ideas, tweet and "listen" under the hastag #cfbigidea.

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