The role of patients reporting evidence. Pacientesonline: the site for patients, done by patients

Article type
Authors
Cattivera C1, Pardo-Pardo J2, Tristán M3
1Director, Pacientesonline, Avellaneda, Buenos Aires, Argentina
2International Relations, Iberoamerican Cochrane Center, Ottawa, Ontario, Canada
3IHCAI Foundation-Central America and Caribbean Cochrane Branch, San Jos é , Costa Rica
Abstract
Background: Pacientesonline was born in 2005 with the clear objective to be place for patients made by patients understanding the enormous difficulty of obtaining reliable information in Spanish language. The starting point was the difficulty of finding reliable information for non-English speaking. Objective: To provide quality and evidence based information to patients to help them on health decision making. Methods: Pacientesonline is a site aiming to improve the dissemination and communication on the available information obtained from reliable sources and based on scientific evidence. The content is divided in notes, that are created from the queries received in our mail contact and by our own research criteria of noteworthiness. It includes the issues more prevalent worldwide: hypertension, obesity, thyroid, sexually transmitted diseases. Many notes also emerge from the interviews with different doctors identifying patient needs (climacteric, lymphomas, rheumatology). When enough material is assembled, we create Special Reports linking different notes on a particular theme (ie: breast cancer, lymphedema,mammography, sentinel node). Results: Pacientesonline include 14 sections with more than 4,000 internal pages. Interaction with users has facilitated to overcome the Internet barrier: four of this sections have linked face-to-face events: :evidence-based medicine, patient safety, Doctor-Patient meetings and RAMPA. From May 2005 to March 2010 pacientesonline has received 1,073,876 visits, been one of the most popular independent health information webpages in Latin America Conclusions: Patients Online is an example of knowledge translation to patients. The volume of visits illustrates the need of independent and reliable patients health information sites that are based on reliable scientific evidence. This initiative, initially designed as a dissemination tool, has also emerged as a capacity building provider due to the user requests and needs.