Wednesday, December 10, 2008
Palliative care folks tend to be a sharing bunch of people when it comes to professional issues. Willing to share stories of difficult symptom control issues, or communication challenges. Willing to share their knowledge of palliative medicine to help other health care professionals provide better end-of-life care. Willing to cross boundaries amongst rival local medical systems to provide support to each other.
When it comes to research I think we operate in silos, and the ability to share research data impedes the progress we need to achieve. Think of all the hospices and palliative care teams who have access to some great clinical data, but lack the ability to share and collaborate easily.
Science Commons aims to make sharing data amongst researchers as easy as ordering a book from Amazon. This wisdom of the masses/Wiki-nomics approach requires open access to journals, and a computing infrastructure that allows for the secure exchange of data with unified formatting. Here is a quick video about their approach (email subscribers click the title to see the original post with the embedded video):
Our field already has a few intrepid people encouraging collaboration. The Center to Advanced Palliative Care represents hospital based palliative care teams. The National Palliative Care Research Center is a one-stop shop for beginning palliative care research, but does not focus on networking. The Population-based Palliative Care Research Network (PoPCRN) was one of the earliest collaborative efforts but seems to have gone quiet recently.
Establishing a research infrastructure, integrating it into regular clinical care data, and developing a network to collaborate would be an important step forward to improving end of life care. I am hoping with Sean Morrison as the President-Elect for the Academy we may see some progress in these areas.