The top information sources for patients with a serious illness today are clear – their medical team and the Internet. The most active online are those living with chronic disease. Some 75 percent of these patients say their last health search affected a decision about how to treat a condition, compared with 55 percent of other e-patients, according to a Pew Research study.
The shift to online resources for healthcare information has also given birth to a new breed of "citizen" journalist, the patient reporter. Patients and caregivers are going directly to the information sources themselves, bringing along questions from their community and taking back vital, actionable knowledge.
During the past decade, increasing numbers of patients and caregivers have attended medical conferences where professionals gather to learn the latest clinical trial outcomes, new and promising treatments, best practices in managing cases and more. Once the province of medical professionals and those seeking to influence them, including pharmaceutical firms and medical supply vendors, medical conferences are now adding formal and informal patient forums to the agenda, and are starting to give patients a seat at the table too.
Typically the “news” from these conferences has been distributed via clinical and trade media, often in scientific jargon hard for lay people to understand or in financial jargon more focused on the profit potential of a new treatment than the actual impact on patients. Consumer media typically picks up the most dramatic announcements or those impacting the largest number of patients. The result for most patients is that it can take months and even years for the information from these conferences to filter down to patient education materials in easily understood language.
That’s changing for many chronic conditions. The Internet enables anyone with a keyboard to communicate with fellow patients right away.