Helping patients learn more about medical conditions and potential treatments is a driving force behind efforts to broaden access to the research literature. While there remains a lengthy gap between basic research and clinical application of findings, research articles and books can serve as valuable tools to improve communication between physicians and patients. A good example can be found around the 31 minute mark in the video below, from Ken Burns’ documentary series, Cancer: The Emperor of All Maladies.
(For those wondering, I’m told the text being used is the TNM Staging Atlas with Oncoanatomy from Wolters Kluwer.)
While in the past we’ve discussed publisher efforts to provide access to developing countries through programs like Research4Life, it’s worth highlighting similar programs meant to bring the latest in research to patients and their families.
PatientINFORM is a collaboration between medical publishers, health organizations, medical societies, and health information professionals. Patients and their families can get access to research articles, as well as information prepared for the non-scientist reader.
PatientACCESS provides direct access to patients and caregivers through a simple process via RightsLink.
Both provide valuable services, but I suspect that as is the case for Research4Life, access alone is not enough. Discovery must also play an important role in getting this information into the hands of those who need it. While the availability of this material is a noble undertaking by medical publishers, helping patients find it remains a challenge.