History
With the invention of email forBeneficial Outcomes
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.Who benefits most?
While online health communities can provide general benefits. There are also particular individuals who may benefit most from them. In particular, online health communities are especially beneficial when they are used in a way that allows for connections and resources that would otherwise be unavailable. For example, while members of an online health community may know one another, a real strength and benefit of them is that they can connect people who would have otherwise been unable to do so. There are certain individuals who may have smaller in-person networks who can adequately address their medical needs. Therefore for these individuals, online health networks may be particularly beneficial. Specifically, the availability of online health communities is especially appreciated by individuals with impaired mobility, potentially embarrassing medical conditions, or caretaker responsibilities that may prohibit them from receiving adequate face-to-face medical and emotional support. Beyond this, there are several factors that have been identified for evaluating patient experiences with online health communities and evaluating who they benefit. The four main dimensions that contribute to a patients experience with online health communities include: pragmatic, empathic, sociability, and usability. The pragmatic dimension refers to the goals of a user, and if the use of the community aids achievement of those goals. The empathic dimension refers to the feelings and emotions of empathy that are felt when interacting with the community. The sociability dimension refers to the overall social experience that a patient feels when interacting with the community. Finally, the usability dimension refers to the experience a patient has when navigating the features of the community. Together these features can help identify for which patients and on what platforms the largest benefits will be seen.Complications
Despite the benefits that online health communities may provide, there are also several complications that they may pose.Misinformation
Given that one of the primary uses of online health communities is the exchange of health information between untrained individuals. In many cases, people do not use the best judgment when sharing and relying on information in online communities, but the consequences of poor information depends on what the information is and how it is used. Medical information can have grave consequences when poor advice is taken or is erroneously applied; or when professional treatment is not sought. The criticality of health-related information necessitates careful consideration of how to design forTrust and safety
The sharing of anyAdoption and engagement
There has been a wide and rapid adoption of online health communities from patient populations. However, some of the greatest benefits are realized when these communities also are utilized by medical professionals. For patients, there is a clear incentive to increase information, support, and care through these communities. However, there is less of an incentive for medical providers to participate. Doctors can be slow to adopt technologies that deviate or disrupt their regular patterns for providing care. The additional time and responsibility commitments and significant barriers to adoption of these communities for medical providers. Furthermore, a common issue with online health communities is a lack of engagement from those with medical conditions, even after they have decided to adopt the technology. Users often don't feel they have an obligation to share or create new content, even if they consume content from other individuals. Two major reasons for this behavior are (1) a lack of social responsibility to contribute, and (2) concern about how other may perceive them if they did decide to contribute. Several options for addressing this are shown to be effective. For example, if people are paired with an online "buddy" as part of the larger community, they are more likely to contribute as it can help give a larger sense of social responsibility. Nevertheless, driving adoption and engagement is a major hurtle for many online health communities.Accessibility
For the benefits of online health communities to accrue, systems must be developed that areParticipation
An obvious factor for any online community is managing user participation, engagement, and behavior. Different people have different experiences with online health communities, which can lead to differing impacts and implications. Some individuals show high engagement, while others are more passive in their use ( lurkers). Understandably, individuals who showed much higher levels of engagement reap the highest benefits in outcomes such as emotional support, help giving, and emotional expression. That said, even lurkers can see some beneficial level of peer support from the online communities. Beyond the extent to which people participate in these communities, there is also a distinction in the type of engagement that is seen by those who actively participate. Some individuals more frequently share general health information such as hospital information, drug side effects, and health behaviors. Whereas, other individuals choose to share more specific knowledge such as their private health information. Private information can be more valuable for other patients. However, it is also much more difficult to share than general knowledge. Regardless of the type of knowledge being shared, reputation, social support and sense of self-worth all were associated with more sharing. Furthermore, face concern, which is the extent to which a person values the protection and improvement his or her positive social image, promotes general knowledge sharing and inhibits private sharing. Emotions, time, and effort are some of the largest barriers to providing private knowledge. Beyond these factors, there are also various other structural factors that may impact community participation and engagement. In some online health communities, health experts are incorporated as moderators in order to provide people with accurate clinical knowledge. Inclusion and participation from moderators can help create a more empathic community culture. However, the inclusion of moderators can also give users feelings of inequality if posts do not receive equal responses. In addition, determining which post need clinical expertise, and which would suffice with community expertise is not an easy task, and can cause further issues. From this, when users do receive a response it can mislead them about what kind of consultation they are receiving. While moderators are often put into place to help guide the conversation and flow of information in these communities, there are also users that occasionally adopt this role naturally. These influential users have accumulated the power to drastically influence other users and the community as a whole. For example, influential users can help build and manage a community, provide marketing, initiate community driven campaigns, and disseminate information. While these factors help explain the experience and participation of users during a very particular point in their lives, there are also several factors to consider about the experience of patients who stop using or participating in these communities over time. Based on the benefits that these communities can offer, removing yourself from them could stifle the beneficial effects. There are numerous reasons for why someone might stop participating in a community, such as a lack of need, a poor experience, or a failure of a sites design. However, some argue that oftentimes these situations are caused by a logical progression of life changes as a given person's experience with his or her condition evolves. Regardless of the reasons for leaving, both the participation and non-participation of a communities members is a very important factor to consider, as it has strong implications for the overall success of the community.Forms
As mentioned previously, these communities are distinct from general online communities in that they focus exclusively on health-related topics for those currently navigating the world of diseases, illness, and medicine. Furthermore, they also differ from other health-related sites that only allow users to retrieve information. The main hallmark of these communities is that they allow for communication between multiple people. That said, they can take a variety of forms, and vary drastically in their scope. These online health communities can be formed across numerous different types of communication platforms such as blogs, chats, forums, wikis, and social media sites. As long as people are able to communicate with each other over the internet about medical conditions, any given communication platform can be used to create an online health community. Beyond the platform used, communities can also vary in terms of how open and accessible they are. Some communities are open and public to anyone who is interested, while others are very private. Furthermore, some communities focus on multiple conditions, while other focus primarily on one. Finally, the target user population can also differ between networks. For example, some communities are targeted towards older adults, while others are exclusively for adolescents.Features
In terms of functionality, there are several primary features that most online health communities possess. The primary feature that most online health networks have are those that support social learning and networking. Communication is at the core of these communities. This communication can take the form of both one-to-one communication and one-to-many communication. Oftentimes they feature discussions on practical problems faced by people during their condition such as depression, side-effects of medications, etc and answers to those problems provided by other members. Another feature type that most online health committees have are those that allow for information distribution. These features often can take the form of a blog, news area, staff-written articles, or even a regularly scheduled email newsletter. These features can allow for the exchange of important information such as recommendations and feedback about certain medications or medical procedures. A third common feature type are those that allow for guidance. These guidance features often take advantage of the one-to-one and one-to-many communication features mentioned previously. Some communities have specific features that facilitate guidance from medical professionals, while others provide specific tailored mentoring or coaching. While less common, a fourth feature types that is sometime available in online health communities are those that are designed to drive more user engagement. Examples of these kinds of features include features such as gamification or social recognition. Finally, another less common feature type are those that allow for the sharing of personal health information. Some community sites allow users to enter or upload specific health information, and share that with other users. This type of feature may raise some privacy and safety concerns for some, which may be why it is not as prevalent as some of the common features.Example communities
* Smart Patients * PatientsLikeMe * HealthBoards * MedHelp *See also
*References
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