As reported in NPR’s “Morning Edition”, patients with rare medical conditions are using the Web to form online communities, enabling medical research for these conditions by finding these patients suffering from the rare diseases. In the past, researchers have complained that it has been difficult to access the patients with rare diseases for study since privacy laws inhibit finding them.
In addition to the creation of new websites for the purpose of a particular rare disease, patients are engaging in information exchange in message boards, forums, chat rooms and social networking sites.
According to Sharonne Hayes, a cardiologist at the Mayo Clinic, “This is not investigator-initiated research”. To belittle the value of patient-driven sites is naive. Information and data exchange among patients does more than just stroke patient feelings. The ensuing discussions may very well lead to insight and new developments towards treating or preventing the rare diseases.
Connecting online has a great deal of value in sharing information and consoling those who need an empathetic ear (those who can say “I’ve been there and come out the other side, a happier, healthy place”).
While this is beneficial for individuals engaging in “patient-initiated research”, it is not the only research that will become widespread as we move forward.
As more data and more patients are entered into electronic health record systems, healthcare providers will be able to cross-reference and obtain data on individuals suffering from all ailments. While this is helpful for care in general, it will be crucial in helping those who have less common conditions.
With initiation and compliance of meaningful use and interaction between various programs and systems, this is a great resource and benefit to electronic medical records that will be more accessible in time.
