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.Online Health Search 2006 Summary of Findings
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.
Perceived empathy Patients show increased perceptions of empathy as a result of information seeking behavior on online health communities. In general, perceptions of empathy are shown to have potential benefits for impacting the success of health care treatment, as well as the healing process. Furthermore, traditional medical provider empathy is costly and time-consuming. Perceptions of empathy from online health communities can act as a feasible replacement for provider empathy.
Behavioral benefits Online health communities not only can have psychological benefits, but they can also have benefits for health behaviors.
Treatment adherence Patients who use online health communities may also see increased adherence to health treatments. Given the resources such as social support that these communities provide, they are more able to manage the tasks and responsibilities that their treatment requires.
Self management Traditionally, patients are not well-equipped to manage their own illnesses. The resources that online health communities provide cut down on the need for in-person visits with medical professionals and allow patients to address many low level health issues on their own.
Institutional benefits Beyond the effects that online health communities can have on specific psychological and behavioral outcomes in various illnesses, there are several other broad benefits that they can provide to the institution and structure of health care.
Interdisciplinary collaboration For medical professionals, online health communities can be valuable tools to help foster interdisciplinary collaboration across various institutions. This collaboration can help medical professionals provide more diverse and beneficial care to patients.
Medical professional knowledge In online health communities composed of medical professionals, participation can lead to increased exchange of medical information, as well as the adoption of disease specific knowledge that can be used to inform treatment and other medical decisions.
Patient centered care Patient centered care is a health care strategy that is focused on engaging patients to become more active participants in their health care. The use of this strategy has shown to improve the efficiency of care, patient-doctor communication, treatment compliance, health outcomes, and decrease overall health care utilization. Through improved access to personalized information, patient participation, and emotional support, online health communities promote patient centered care practices.
Health care utilization At current rates, the number of patients who need specialized health care is growing more rapidly than the supply of well-trained professionals who can address these needs. As a result, current utilization rates of health care resources is much higher than is manageable. However, implementations of online health communities are shown to result in a reduction of traditional in-person health care utilization.
Health care cost In parallel with increased health care utilization, the cost of providing health care also continues to rise and may become unaffordable as a result of advancement cost and over treatment. Similarly, implementations of online health communities have resulted in both health care cost reductions.
Illness benefits There are a wide variety of online health communities. Some of these communities target vary specific conditions, while other are more open ended. That said, patients with certain conditions are shown to specifically benefit from these communities. Broadly, patients with conditions that are more rare or severe may garner stronger benefits given that the online health communities can provide resources they would likely not get elsewhere. More specifically, benefits of these communities have been seen in a variety of conditions such as cancer, HIV/Aids, infertility, diabetes, and other rare illnesses.
Social medical capital benefits Participation in online health communities not only provides users with emotional and informational support but also helps them expand their social networks. These communities enable individuals to form connections with others who share similar health experiences, fostering a sense of belonging and mutual understanding. These social bonds can extend beyond health-related discussions, enriching users' overall social lives and contributing to their emotional well-being. Social medical capital is defined as the advantages that any user can gain from participation in the social networks provided by online health communities. From a network-based perspective, social medical capital is rooted in resources socially embedded in connections between users and accessible through these connections. This means not only that users can benefit from one another, but also that whether they can extract value from one another depends on how they interact.