The Lybbaverse / open-source  

Case Study: C3N & Lybba help kids with Crohn’s disease

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Client: C3N (Collaborative Chronic Care Network)
 
Based out of Cincinnati Children’s Hospital Medical Center, C3N assists pediatric patients with IBD. Patients and clinicians work together to develop data collection tools, protocols and reports that determine individualized combinations of treatments and lifestyle modifications. By providing a controlled environment for patients to experiment, C3N supports patient activation and encourages self-directed care, while allowing doctors to improve the quality of the clinical experience.
 
The Challenge
 
For patients to participate fully in the C3N, they need to be able to interact with each other, communicate with their clinical care teams, keep track of their symptoms and manage their treatments. C3N needed to provide accessible tools for both patients and care teams to engage both in and out of the doctor’s office.
 
The Strategy
 
Lybba created the C3N platform to help patients track their health between appointments, visualize their health over time via clear and engaging graphics, more easily communicate with their physicians using online and mobile applications, and even choose to share their medical data with other patients and researchers. The system also provides a support mechanism for parents and a quick, easy way for researchers and clinicians to get the data they need to make quality improvement decisions in relation to the care of their patients. By increasing patient engagement, the C3N can transform the experience and outcomes of illness, and accelerate the discovery and application of new knowledge.
 
The Results
 
By combining large data registries and making them accessible and interactive, the C3N Project drives action and innovation to create a more reliable and accountable care delivery system for children and their families dealing with chronic gastrointestinal diseases.  Since beginning in January 2010, C3N has:
  • Assembled a diverse team of experts from medicine, public health, psychology, computer science, film, design, law, sociology and economics. 
  • Created an initial innovation network of more than 100 patients, clinicians, and researchers - all contributing actively to the C3N for IBD. 
  • Designed and put into prototype testing 14 innovations.
  • Won a $12 million grant from the US Agency for Healthcare Research and Quality to build the data and informatics infrastructure for the C3N data network.
  • Put into practice policies for overcoming barriers such as concerns about intellectual property, data sharing and privacy, and medicolegal liability. 
  • Designed the architecture and specifications for the communication and technology platform necessary for patients, families, clinicians, and researchers to collaborate. 


See one patient's success story here.

Don’t pay twice for biomedical research

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Today, we're launching an official White House petition at http://access2research.org to extend public access to all scientific articles emerging from taxpayer-funded research. After years of fighting for access to scholarly research, and after winning the battle to implement a public access policy at NIH, it has become clear that being on the right side of the issue is necessary but not sufficient. We've had the meetings, conducted the hearings, and replied to the requests for information.

But we're opposed by a small set of publishers who profit enormously from the existing system. And they can - and do - outspend those of us who have chosen to make a huge part of our daily work the expansion of access to knowledge. We know there is a serious debate about the extension of public access to taxpayer-funded research going on right now in the White House, but we also know that we need more than our current approaches to get that extension made into federal policy.

The best approach that we have yet to try is to make a broad public appeal for support, straight to the people. Thanks to a platform the administration has created, petitions receiving more than 25,000 signatures must be reviewed and integrated into policy. But there's a catch - a petition only has 30 days to gather the required number of signatures to qualify.

We can get 25,000 signatures, and more, if you join with us to spread the word. A blog post, an email to friends, a tweet, a Facebook share, you name it, it helps - something that tells thousands of people "I support this petition, I'm signing this petition, and I thought you should know about it too." Qualified signers must be at least 13 years old and have a valid email address. 

We want to show the White House that this issue matters to people and that we all understand how it relates to their own health and the wellbeing of allIf we can all come together to get the word out at once, and stay behind it for 30 days, we have a real chance to get access to taxpayer-funded research across the entire government and send a signal that the people have a voice in this debate, not just publishers.

Many thanks for your support of Access2Research.