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.
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.
4. OPCs provide information and tools for caregivers. As regular followers of this blog know, a common thread of many of posts is the involvement or focus of the caregiver by technologies. Caregivers are the front line of advocacy for their loved one or patient. They have special needs and require different tools. As advocates, they too require emotional support as stress and burnout are common. Online communities devoted to caregivers provide additional avenues of support.
5. OPCs provide a forum for patients, caregivers, and providers to interact. Aside from the office, it might be impossible for patient, caregiver, and provider to collectively discuss even generalities about the patient’s disease or condition. While a provider in an OPC will in all likelihood not be the patient’s personal one, hearing from the ‘other side’ is a good experience for all concerned. Respecting confidentiality, much can be learned from discussions. I experienced this first hand when conducting my own patient support group for 20 years.
OPCs are replacing in-person support groups (though there are pros and cons to both). They are easily accessible, cross geographic and cultural barriers, and can involve all stakeholders in the healthcare ecosystem from which all may benefit.
David Lee Scher is a former cardiologist and a consultant, DLS Healthcare Consulting, LLC. He blogs at his self-titled site, David Lee Scher, MD.