Fostering innovation to speed the improvement of health care is the goal of an $8.3 million grant to researchers at Cincinnati Children's Hospital Medical Center.
"The system of providing care for the chronically ill is broken," says Peter Margolis, MD, PhD, co-Principal Investigator of the project. "What we aim to do, building on our previous successes, is to create a totally new system of providing care through widespread collaboration."
This ambitious undertaking, dubbed a "collaborative clinical care network," is modeled after collaborative innovation networks, cyberteams of self-motivated individuals with a collective vision, enabled by the Web to achieve a common goal by sharing ideas, information, and work.
COINs are not new -- collective intelligence has existed at least since humans learned to hunt in groups. The Internet, though, has allowed COINs to deliver greater potential, with Wikipedia, Linux, and the World Wide Web Consortium itself prominent examples.
Collaborative innovation networks are, however, new to chronic illness care. While many doctors and patients use the Web to search for and find health information, existing health-related social networks separate patients from providers, despite the fact that patient-provider interaction is key to chronic illness care.
"Everyone wants better health for kids, and everyone involved has stories about road blocks to better care," said Michael Seid, PhD, the other co-PI on the project funded by the National Institutes of Health. "We aim to harness doctors,' nurses,' and patients' inherent motivation to improve and the collective intelligence represented by all parties."
"We are building a way to bring patients and providers together and give them the tools they need to collaborate to improve care and outcomes."
The $8.3 million grant from the National Institutes of Health is part of $348 million awarded Sept. 24, 2009 to "encourage investigators to explore bold ideas that have the potential to catapult fields forward and speed the translation of research into improved health," according to the NIH.
"Although all - programs encourage new approaches to tough research problems, the appeal of - (these) programs is that investigators are encouraged to define the challenges to be addressed and to think out of the box while being given substantial resources to test their ideas," said NIH Director Francis S. Collins, MD, PhD.
Collaborating with the Cincinnati Children's researchers are doctors and hospitals from ImproveCareNow, a collaborative improvement network focusing on Crohn's disease and ulcerative colitis, as well researchers at the University of Chicago, the University of California - Los Angeles, University of Vermont, Massachusetts Institute of Technology, Science Commons, Lybba and Ursa Logic Corporation.
The research will focus on Crohn's disease and ulcerative colitis, which affect about 100,000 young people in the United States.
These were chosen because they have so much to gain from the collaborative: rare enough that patients do not have access to a large peer group and clinicians must collaborate across treatment centers to achieve the numbers they require for study; they primarily affect children in early adolescence, a perfect age to engage in Web-enabled innovation; and because they are uncommon, there are few financial incentives for the pharmaceutical industry to conduct studies with the group.
Success already seen
Margolis and Seid already have achieved strong initial success through their involvement in the ImproveCareNow network. ImproveCareNow is one example of a highly successful collaborative network.
ImproveCareNow, which focuses on Crohn's disease and ulcerative colitis, is a collaboration of 16 hospitals across the country and about 2,500 patients. Using a model for systematically collecting data and sharing it openly, care has improved quickly and doctors have seen a dramatic, rapid increase in the number of patients in remission.
Translate the success to the entire population and it means 10,000 new children in remission, without new drugs and without spending huge amounts of money (and lots of time) on research and development, according to the researchers.
Networked collaboration offers opportunities for patients and care providers to share their experiences, but these stories will be complemented by real data on care and outcomes. The researchers say combining and sites' performance data will allow providers and patients to see not only what others are doing, but how care is improving.
"Right now, it is painfully slow to get medical information and new discoveries into practice," said Margolis. The reason, he says, is because doctors and patients may operate in virtual silos which hide their information. Networked collaboration allows participants to share more easily so that others can see, learn, and get healthier.
Social media infrastructure
The new research will take advantage of a social media platform being developed by Lybba, a California-based non-profit whose mission is to educate and empower people to lead healthy lives. Lybba is headed by Jesse Dylan, a cinematographer who created, among other things, the "Yes We Can" video in support of Barack Obama that was seen by 30 million people through YouTube in just a few weeks during the 2008 presidential campaign.
Lybba uses social media to allow users to share experiences, opinions, comments and questions. The networking will include blogging, photography, video, secure messaging and instant messaging.