Thursday, April 25, 2013

What A Good Day Looks Like

I have spent the past several months, if not the past year, working tirelessly to convince the CF Community at large that we need a Collaborative Chronic Care Network. One by one, slowly, I have somehow managed to either sufficiently educate or outright annoy enough people into listening that I've gotten some movement. It started in Cincinnati, using the C3N team and my position on the CF Quality Improvement team to show how processes could be made better, incomplete data filled in, patient engagement encouraged and outcomes improved. I got someone to listen, and then they got someone else to listen, and before I knew it we had a team (a small team but a team nonetheless) eager to find a way to make this happen. Then last fall, I made a phone call to the Cystic Fibrosis Foundation's national office to tell them about our idea. I got an admin who asked me to send an email with more information. And then I got a response that it would probably be some time before anyone had a chance to get back to me. That same day (that SAME DAY), she emailed me again saying that their VP of Clinical Affairs was intrigued and wanted to arrange a call. That's when I had to call Children's and tell them that I'd reached out and now we needed to get something together to share (it's easier to ask for forgiveness than for permission). I was delighted to hear that they were as excited as I was to engage with the CF Foundation and we worked together to present our project. I have to admit that looking back at that time, in Oct. 2012, I hadn't even fully grasped the project I was pitching, I just knew that it held potential and that I could continue to learn.

We didn't know it at that time [though I had a feeling], that call in October would be the beginning of a beautiful relationship. Since then, we were able to motivate more of the CF team in Cincinnati and even gain funding to move forward with several of the C3N intervention over the next year. The opportunity to collaborate with the CF Foundation would provide an incredible platform to move this forward, and we were starting to see that they felt the same way. Their VP of Clinical affairs came to Cincinnati in January and was very intrigued by the new way of managing healthcare that we were suggesting. Enough so that we continued our conversations over the next several weeks until we invited them back to talk more about how we could work together. That's when we found out that, not only would the one person who had come before be returning, but 7 members of their leadership team were interested in coming to Cincinnati to learn more. That meeting happened yesterday, it it was a good day. Like really, a really good day.

The group that came to listen to to our collaboration talks was nothing short of impressive. There were brilliant scientists, leadership from the Anderson Center at Cincinnati Children's, doctors, nurses, and a number of other collaborators. There were talks on what a C3N is as well as a number of other Learning Networks and how they are created, sustained and what makes them thrive. We talked about the business model of the CF Foundation and what we could learn from them in their venture philanthropy and collaborative efforts with pharmaceutical companies and others. There was so much amazing information sharing going on throughout the day that I knew that this partnership was meant to be.

The second half of our day was spent in breakout sessions sharing some of the different intervention platforms - Nof1 Learnings, an inter-visit planning tool, patient activation technologies - the list goes on and on. This was one of the most engaging parts of the day because people really got to see the application of our proposed interventions and how they could help the CF Community as a whole.

I had the opportunity throughout the day to share several conversations with Preston Campbell, the Senior VP of the CFF. I asked him a little bit about the new infection control guidelines for CFF events and what he saw as changing with the care center guidelines. One of the big reasons for the change to the guidelines for CFF events is that the benefit to the CFF (mostly our fundraising efforts to support them) was not worth the risk to patients. Not that they ever want to put patients at risk, but within the clinical setting, the benefit of seeing your care team on a regular basis outweighs that risk of catching a pathogen. It seems that there will be more gowning and gloving, less shared space, even more rigorous cleaning in between patients. He did mention that as these corrector drugs continue to develop, he sees the future of CF being one where a perfect combo is found for each and ever patient individually, not just grouped by mutation. Perhaps it will work out to be that certain classes of mutations find the most benefit from a particular combination of corrector drugs, but we will be able to use DNA swabs to test drug combos in a petri dish to see which will most effectively correct your disease. So cool.

The day wrapped up around 3pm with a round table attended by some absolutely incredibly brilliant people...and me. That's right, I had nothing to lose by sitting right up in the middle of the conversation adding my two cents on behalf of the rest of the CF patient/family community, so I did. Our hypothesis was validated - the CF Foundation called the work at Children's fascinating and innovative. They are interested in a collaboration of a capacity still to be determined, but a partnership nonetheless. This is so amazing for the CF community. This new system will allow for more individual health monitoring, self experimentation under the supervision of physicians, patient connection in a time when CF patients are being driven farther and farther apart by infection control scares, and overall improved outcomes via all of these new metrics. The benefits of a C3N for CF will be seen by patients, doctors, other clinicans, families, researchers, teachers...and the list goes on and on. I cannot wait to get started on this pilot project. Ultimately, and probably just in time for the last small percentage of the CF community to be "cured", we will have this new care system in place for everyone to benefit from. I'm gonna throw out a guess of 3-5 years, and its honestly just a guess (maybe an ambition). So get ready world, my goal of ultimate domination is slowly coming to fruition :)

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