Online health communities (OHCs) are a type of online social network focused on health-related topics. They enable patients, caregivers, and health professionals to exchange information, share experiences, and provide social support. Participants may include individuals living with specific illnesses, medical professionals with shared clinical interests, non-professional caregivers, or a combination of these groups. The term is primarily used in academic and health informatics literature. Increased internet access has coincided with greater use of online health information resources. Surveys of U.S. adults indicate that most internet users seek health-related information online, and that many individuals with medical conditions use online platforms to connect with others who share similar experiences. OHCs may operate as standalone platforms or as interactive features within larger health information websites, including discussion forums and peer-support networks. Depending on the structure of the community, participants may share personal illness experiences, exchange knowledge and information about treatments, and discuss disease-specific concerns. Research has examined the use of OHCs among individuals with conditions such as cancer, HIV/Aids, infertility, diabetes, and other rare diseases. Studies describe these communities as venues for the exchange of informational and emotional support. Research has also identified the presences highly active members in online health communities, sometimes referred to as 'superusers', who are associated with patterns of engagement within these communities . OHCs differ from static health information websites in that they facilitate interactive communication among users. They vary in scope, membership structure, and accessibility, ranging from open public forums to moderated or condition-specific networks.
History With the invention of email for ARPANET in 1972, communication through a computer to distant geographies became substantially easier. Listservs, which allow a multitude of respondents to interact with an email thread and Bulletin Boards, an online representation of the community bulletin boards commonly found on campuses, were introduced contemporary with one another. These three tools along with USENET provided the tools for rudimentary online communities to begin to coalesce around health related topics. In 1991 CERN labs introduced the World Wide Web, allowing a more graphical representation of the topic to be discussed. This change lessened barriers to communication and enhanced community building. For example, the growth potential from linear to geometric was made possible through this change primarily because audiences could access static content more easily without the author's knowledge or synchronicity in time. Furthermore, the graphical nature of the World Wide Web made the exchange of medically relevant information more easily possible. Lastly, the widespread use of the World Wide Web in PC's made during the mid-1990s made the technology available to a much wider audience than previous technologies. By 1997, the World Wide Web was the predominant medium for ad hoc online health communities to form. Even more, with the evolution of Web 2.0 functionality and Internet penetration during the 2000s, web-based programs became increasingly utilized as a mechanism by which to incorporate social, interactive, and guided behavior change processes. Many of these behaviors for patients and medical providers increasingly centered around the exchange or health-based information. As these communities emerged, more and more research was conducted assessing their benefits, complications, and other features. Much of this research has supported their beneficial aspects. As a result of these benefits, medical health organizations increasingly began including online health communities as part of their patient support services. Examples of these organizations include Kaiser Permanente, Johns Hopkins, Cleveland Medical Center, and MD Anderson Cancer Center. Currently, online health networks run by both private companies, public hospitals, and even decentralized social groups are a regular part of the illness experience for many individuals.
Benefits The importance of online health communities is evidenced by their popularity, as well as the significant impact they have on the lives of their members. That said, there is limited consensus on best practices in online health community design, and research on the benefits of online health communities is slightly limited. Despite that lack of extensive research on its benefits, there are still many situations where online health communities appear to aid patients and medical professionals. Additionally, many of these benefits are seen within specific illnesses, and are most beneficial for certain individuals, and would be otherwise unattainable outside of the context of online health communities.
Psychological benefits There are multiple psychological constructs that are shown to benefit from online health communities. This list identifies various beneficial outcomes from the most frequently studies constructs.
Social support Across a variety of chronic and acute illnesses, online health communities have shown a positive effect on social support. This support can be beneficial to patients in a number of ways, such as helping them adjust to the stress of a particular condition. Support is also a consistent indicator of survival for many conditions. Patients interact with others in online health communities in a number of different ways. As a result, various types of social support occur in communities. When users are seeking advice, education, or referrals about a certain condition or experience, they receive informational support. Alternatively, when users are seeking things like encouragement, empathy, affirmation, or validation, they receive emotional support. Finally, when users are engaging in behaviors such as chatting or humor, they receive support in the form of companionship.
Disease knowledge Patients who utilize online health networks often experience increases in knowledge specific to the disease or condition that they are dealing with. This increased disease knowledge can help patients make more informed decisions about their health.
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