Patients living with the rarest of diseases are often left puzzling over their symptoms with little help from clinicians. The time it can take to pore over dense scientific publications and search for a clearer picture of what an elusive medical condition might be and how to treat it leaves many taking research and diagnosis-searching into their own hands. The Internet is a valuable research for individuals who find themselves in this position, but their efforts are stalemated by the wealth of data and research that is closed to public access.
In an effort to combat this problem, HHS recently announced PubMed Central, a research paper repository, will expand its database to include a wider range of findings on various health topics, including toxicology, environmental health and comparative effectiveness, according to an article by Susannah Fox, chief technology officer of HHS.
"The result is that within a year of the publication of the research by these agencies, anyone will be able to read, download, and use published information at no cost," Ms. Fox wrote.
However, Ms. Fox points out more can be done to get critical research in the hands of patients who need it faster. In order to achieve that ultimate goal, there are three challenges that must be met:
- The creation of a central structure to serve as the data-storage equivalent to PubMed Central.
- The implementation of policies that ensure privacy and intellectual property are maintained.
- Testing for new data sharing models that preserve quality, integrity and credit to those who created the original resource without limiting access to those who could build on and create new value.
The next year will see a major focus on policy development to overcome these challenges, including efforts from HHS, the National Institutes of Health and the CDC, according to an HHS statement.