If one searches for “online patient communities” over 19 million Internet sites are found. Online patient communities (OPCs) may exist as subgroups of social media sites, non-profit organizations, and increasingly as part of websites of healthcare organizations and stand alone sites.
Articolo di David Lee Scher su KevinMD
Online communities are now becoming a rich source of information gleaned from their discussions. This information will be increasingly used for both clinical and commercial purposes. I will touch on themes which are universal to online health communities. For a discussion citing specific examples, I would refer you to an excellent post by David Shaywitz. Physicians have expressed concerns about online communities. If appropriately conducted, like social media in general, I don’t believe these are barriers to acceptance or participation.
1. OPCs provide education. While surveys show that most people still prefer to go to a physician to receive a diagnosis for signs or symptoms, many seek a diagnosis online. One should follow some helpful hints about seeking information online. One interesting study found that it is the information seeking effectiveness rather than the social support which affects patient’s perceived empathy in online health communities run by healthcare organizations. One might think that a similar study conducted on social media sites would have the opposite result (see below). While confidentiality and accuracy of information are legitimate concerns, as long as the participant is aware of these issues, useful information can be provided via OPCs, especially if physicians and other providers are members.
2. OPCs provide emotional support. Although OPCs have been touted as providing emotional support, few studies have been conducted in this arena. One study of 528 patients with breast cancer, arthritis, and fibromyalgia who participated in OPCs demonstrated patient empowerment The empowering outcomes that were experienced to the strongest degree were “being better informed” and “enhanced social well-being.” No significant differences in empowering outcomes between diagnostic groups were found. Another study, utilizing sentiment analysis and natural language processing techniques is being conducted to determine the various strength of emotions in online discussions and to compare emotional status of men vs women, patients vs caregivers and inquirer vs responders.
3. OPCs provide other resources. OPCs whether affiliated or not with healthcare systems or non-profit organizations often (and should if they are good) provide links to commercial, governmental, health and other support services. In addition, community members themselves might offer even more accurate and appropriate first-hand advice regarding these resources. Logistical (living arrangements, medical and surgical equipment), financial, communication, legal, and other advocacy concerns are commonly addressed in OPC discussions and websites. continua a leggere