Patients as Co-designers
|Patients may be the most underutilized resource in transforming care. They have tremendous insights into areas of uncertainty and many have expertise that they are willing to offer. For example, patients can be experts in computer technology, biomedical engineering, communications, business and so on – they aren't just simply patients. Open-science, network-based approaches allow a disease network to tap into worldwide expertise in ways that were never possible before. And for a patient within the C3N Project, they can share their story through us, test new ideas or contribute their data. The patient is important: “We have a need, and we’re doing something about it,” says Jennie David, C3N PAC Member. What’s more, patients are partnering with C3N innovations, volunteering their feedback and participating as team members alongside clinicians and researchers. “It’s circular – patients aren’t below any clinician or researcher, or parent,” explains Sami Kennedy, C3N PAC Member. The C3N Project believes in the patient voice, and understands what their collaboration brings to the table.|
Patient Innovations | Passive PRO
Passive PRO is a research study made up of patients, just like you, trying out a smartphone app called Ginger.io. The app, available for both Android and iPhone, collects data passively – just imagine your phone keeping in check with your health while you enjoy your typical day-to-day life. Why, then, is Ginger.io gaining the interest of so many patients and their clinicians? Here's what patients have to say:
“Passive PRO can better capture your activities, keeps track without having to remember, better of characterizing activity, better way to track how patients are doing.”
“It's about my ability to get engaged by tracking my symptoms...In a busy world, Ginger.io is an efficient use of my time. I don't mind spending a few spare minutes here and there to catch up on my health and assess how I'm doing.”
“Awesome how easy it is to use!”
“I Love the monthly report because it has allowed me to see trends in my personal data… I feel like my data and participation actually matter.”
“It has been an incredibly helpful tool!"
Patients Team Up
|The Patient Advisory Council (PAC) for ImproveCareNow & C3N is a working group, made up of diverse patients with IBD from all over the country. The PAC works with us, along with ImproveCareNow, to help get more kids into remission and feeling better today. Ultimately, the goal of the PAC is to help their generation, and the next: the voices of the PAC represent the 15,600 children and adolescents in ImproveCareNow living with Crohn’s disease and ulcerative colitis. What does a PAC member do? Patients give insight to research studies, contribute meaningfully to the development of C3N innovations, gain valuable experience interacting with clinicians, researchers and other health professionals, share experiences through social media like LOOP, and more. One great thing about the PAC is the variety of levels of engagement. The commitment level is up to each member, and every patient contributes as much or as little as they want. No matter, the patients share one strong voice – and work to make a difference for themselves and others today. Interested? Email firstname.lastname@example.org.|
How is C3N different?
|Being diagnosed with IBD will often mean an introduction to a large amount of new information - new people, new terms, new behaviors and new organizations. And when it comes to getting to know these new organizations, it can sometimes be confusing. So what's the difference between the C3N Project, the ImproveCareNow Network and CCFA? First, it's important to note that all three are doing very important things for (and with!) the IBD community. The C3N Project is like a lab, where new innovations are cooked up and designed by patients, clinicians and researchers. These new innovations are then taken over to ImproveCareNow, where they can be tested and implemented throughout the growing Network. Now ImproveCareNow wants to talk about the opportunity to get more kids into remission - and what's cool to note is if all kids in the U.S. with IBD were participating in ImproveCareNow, over 10,000 would be in remission and feeling better. On the other side, CCFA is taking steps to find a cure and improve the quality of life for those affected by this disease - and they provide lots of great educational information and resources for patients, adults and families. While the C3N Project and ImproveCareNow collaborate together, all three are great organizations that we hope you now understand a little bit better. Want to know more? Email email@example.com.|