Tuesday, September 17, 2013

A Collaborative Chronic Care Network (C3N) for Cystic Fibrosis

What is a Collaborative Chronic Care Network? I asked the same question about two years ago when I first heard the term mentioned. In short, it's a platform for bringing together patients, clinicians and researchers to work together to create better ways to manage health and care. We all have knowledge and expertise, and by working together we can understand the tools and systems needed to improve outcomes and save lives. We're creating a C3N for Cystic Fibrosis. Get excited people!

Last week, we had the opportunity to introduce the C3N work that we are doing at Cincinnati Children's to some influential members to the CF Community. We had, I think, 19 people on the call and got nothing but positive feedback. The questions that were asked ranged from how we engage others to participate to how this project will be funded. We discussed data privacy, research, and a few of the specific interventions that have been created and tested in other chronic conditions and how they have transformed care. We did have a few technical difficulties and weren't able to have as much of the open conversation as we had hoped too, but questions that were typed in and feedback that we received after the call seemed to indicate that we generated a fair amount of interest and excitement as well as a desire from some to collaborate and get these tools out for use by patients. I was very pleased with the way that the call went and would love to be able to continue these conversations.

Now I want to share it with you! Again, we had some technical difficulties during the presentation and it would seem that because of the way it was recorded, you may need to go through the GoTo meeting link and register to view the recording. The GTM link is: https://www1.gotomeeting.com/register/352665816 After entering in an e-mail address, you should be prompted the option to download the GTM codec. PC Users may first need to install the GoToMeeting codec.
If you're at all interested in this super cool work that we're doing, watch the webinar and then take a look at the questions below. We've tried to address any currently outstanding questions from the webinar below, but know that there are always new questions and ideas and I'd love to help address any that come up. And even more than that, I'd love to hear what you think about all of this! This is going to change the way we manage our health in CF and I couldn't be more delighted to be a part of it!

How well does a C3N work with more passive individuals who don't have great advocacy skills?
Within the scope of the C3N project, there is a role for everyone. There are people who will simply be aware of the project. They will be aware that there are tools at their disposal, that their doctors and nurses are using to manage different aspects of CF health and care. There are people who will participate, who will ask questions, be a part of a pilot, read our blog and follow us on Twitter. There are people who will be contributors. They will give us feedback, join a QI team at their CF Care center, post to the blog. And finally there are people who will be owners, who will lead teams and run QI projects, create tools and organize events. Our goal is to make everyone aware. It would be nice to have 90% of the community participate. A very smaller percentage of people will contribute, and we would be happy if 1% actually take ownership roles. It’s important to remember that this framework is for the C3N project, not for the implementation of different interventions into the CF community. We are using this platform to test and organize new ways for doctors, patients and researchers to transform care. Once we can validate the usefulness of different tools, we hope to work with the CF Foundation on implementation. If you consider things like a quarterly visits for example, they were something that was researched and deemed valuable and the CF Foundation helped to implement it across its centers as a standard of care. Everyone will get to benefit from the outcomes of work that the active and engaged contributors and owners produce.

Have you begun the creation of a C3N for CF? What are the first steps? What do you need from us? How do we see it to fruition?

Cincinnati Children’s has already started work on the creation of a C3N for Cystic Fibrosis. The hospital has provided some funding to begin work on a few interventions over the next year, and we have also received some other grant money for the work that we are doing. The best way to get funding is to raise awareness and to show the value. We are working with the CF Foundation to show how using the C3N platform can change the way that we manage a complex chronic disease like cystic fibrosis. Even though several of these interventions are in pilot phase in Cincinnati we still need broad collaboration from all stakeholders to create a system that will be useful and beneficial to everyone.

Is Ginger.io app available to general users now?

Yes and no. Ginger.io is currently being used in the Diabetes community and is being tested out on patients with Crohns and Colitis. Within the scope of the C3N Project for the IBD community, Cincinnati Children's and Ginger.io are hoping to map the “behavioral genome” of a patient living with IBD. Ginger.io is not yet being used with CF Patients. For the cystic fibrosis community, we imagine using Ginger.io as a way for clinicians to monitor patients between visits and for patients to gain insights into behavioral patters that could affect their health. By creating an automated system that outlines the “norm” for a given patient, both the patient and their clinicians can be alerted when they fall outside of that range. Using a tool like this in collaboration with some of the data that I had shared through PersonalExperiments, we can dig deeper into what is going on before it becomes a big problem. You can learn more about Ginger.io on their website atwww.ginger.io or by watching this 60 second video that does a great job of explaining how they work http://seanduran.com/clients/gingerio/Gingerio_1080p_v4.mp4

How do you plan to initiate and facilitate conversations within the platform (peer to peer, peer to provider, peer to researcher, provider to research, provider to provider) and how will all of those conversations be cataloged? Will they be accessible and open to everyone?

We are still testing the peer to peer communication platform on a small scale, but the idea is that this will be a forum in which conversations are discoverable (by hash tags and other search methods) and available to everyone in the community. Part of the idea is to spark the conversations, but another big part is curating these conversations so that they are useful to people who come after.

What about privacy issues, how is the data protected? If you are collecting all of this data from various stakeholders, is there an opportunity to analyze that data?

Privacy and data ownership are important issues. We start with the principle that patients/parents own their data and should be the ones to decide what their data are used for. Many patients/parents want their data shared more broadly, especially in a de-identified format. We are working closely with key stakeholders to craft policies that balance privacy and sharing.

Again, please do not hesitate to contact us if you have other questions to ask, ideas to share, or are just simply wondering what's going on! You can email us at C3NCF@CCHMC.ORG, visit us on Twitter @CF_BigIdea or on Facebook at The C3N Project

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