“The system of providing care for the chronically ill is broken,” says Peter Margolis, MD, PhD, co-Principal Investigator of the grant project and one of the first participants in ImproveCareNow. “Building on our success with ImproveCareNow, we aim to create a totally new system of providing care through collaboration among doctors, health professionals and patients.”

The grant will fund research and development of a prototype “collaborative clinical care network,” an online platform that will bring patients and care providers together and give them the tools they need to cooperate to improve care and outcomes.

The grant recipients will model their work on collaborative innovation networks (COINs), 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 their full potential, with Wikipedia, Linux, and the World Wide Web Consortium itself as 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-Principal Investigator on the project. “We aim to harness doctors,’ nurses,’ and patients’ inherent motivation to improve and the collective intelligence represented by all parties."

Working with Margolis and Seid are doctors and researchers at the University of Chicago, the University of California – Los Angeles, University of Vermont, Massachusettes Institute of Technology, Science Commons, Lybba and Ursa Logic Corporation.

“We are very enthusiastic about the opportunity that the grant will offer to further the work being done by Improve Care Now,” said Richard Colletti, MD, another initial participant in Improve Care Now. “We feel that the grant award is in part recognition of the remarkable results already achieved by the cooperation among all of the participants in our collaborative.”

“While we recognize that the new research being done under the grant will take some time to produce changes in the way that we practice medicine, we believe that the participation of leading experts from collaborative innovation, social networking, open-source publication and medicine will bring valuable insights to the work of Improve Care Now in the near term, and will help us to continue to attract attention to the work of the collaborative,” said Peter Margolis.

Social media infrastructure

The new research performed under the awarded grant 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 then-Candidate 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.

Participation and privacy are concerns

It will not be easy. The researchers know one of the stumbling blocks likely will be ensuring participation by already-busy doctors. During the design phase, they will study ways to encourage doctors to become more engaged with their patients and with fellow physicians. They hope parents and patients will encourage doctors to get involved, and by connecting colleagues, doctors will view the social networks as a means to collaborate and improve the care they are naturally motivated to provide.

Another issue for the researchers to address is patient confidentiality and federal privacy laws. The software platform on which the network will operate will be designed to protect privacy and confidentiality, but also allow and encourage the sharing of information.

Part of NIH's bold initiative for transformative research

The ImproveCareNow researchers are especially excited about receiving the grant from a special NIH fund set aside for highly creative and highly innovative projects. The so-called “transformative RO1 grants” are for projects “proposing exceptionally innovative, high-risk, original and/or unconventional research with the potential to create or overturn fundamental paradigms,” according to the NIH.

The five-year grant will also allow testing of ways to make care more continuous, communication more seamless, and to enhance patients’ and families’ ability to perform necessary self-care for IBD.

Another advantage of the social networks is that it will improve the relationship between the doctors and patients. Today, there is not a lot of time for pre-visit preparation. Often a doctor glances at a chart just seconds before walking into a patient’s room. The patient may be feeling better at that time and not mention some previous episodes that might help the doctor provide better care.

“The networks will help us move toward more continuous interactions with patients,” Margolis said. “It will improve communication. It will improve relationships and it will improve care.”

He and his partners at centers across the country know their vision is a bold one.

According to Seid, “This is radically different from what we have done in the past. We are not trying to make one change at a time; we are creating a system that makes it possible for patients and doctors to make many changes – quickly and efficiently – to improve health. This has the potential to change the way all chronic care is provided.”

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