Online health communities - Knowledge (XXG)

364:. Health professionals and patients can help explain the physical and emotional stages that individuals go through once they are diagnosed with a particular disease. Furthermore, health professionals understand the risks of misinformation and the role that health care providers need to play. Patients understand the practical information about coping with a disease and the importance of social support and empathy. Designers and developers are needed to understand and explain the technological options available to online health communities and the implications of specific design choices. Such collaborations are needed to explore topics on which there seems to be no prevailing wisdom, such as how the nature of the disease or illness impacts the online health community design; how to improve health literacy; and which of the many collaborative technologies that are available best support peer interaction. Finally, it is important to track and evaluate new technologies, such as 385:

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.

111:, 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 269:

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.

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communities, trust is often predictably built over time, and can lead to the open exchange of valuable personal details that can facilitate the exchange of support and other resources. However, in online health communities, many individuals do not know each other personally, and also perceive their health information as a very personal and private subject. For people to receive the benefits discussed previously, they need to over come this barrier in online health networks and build a strong feeling of trust. Within these networks, potential factors that contribute to feelings of cognitive and affective trust include perspective taking, self-efficacy, and network density.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

53:. Eighty percent of American adult Internet users currently go online to find health care information for themselves and their loved ones, with health searches one of the most popular uses of the Internet. Furthermore, 1 in 4 of people with an illness have gone online to find other people who share similar experiences. 310:, as well as in their need for education and support about a disease or condition. To combat misinformation in these communities, some communities have incorporated health experts to moderate content for accuracy. While such steps may be beneficial, they also hold their own implications for community dynamics. 260:

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.

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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

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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

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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

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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

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Even more, these online communities provide users with a breadth of social resources that may be directly beneficial to their health. These communities have been particularly useful in providing emotional and informational support to those with various illnesses such as cancer, HIV/Aids, infertility,

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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

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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

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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

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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

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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

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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.

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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,

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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

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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

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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

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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

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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

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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

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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.

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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

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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

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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 for

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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

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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

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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

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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

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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 patient's experience with online health communities include: pragmatic, empathic,

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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

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within a community is often impacted by the level of trust those community members have for each other. Distributing personal information can have many consequences if it is not handled properly. Not only does it decrease ones security, but it can also threaten their safety. In in-person

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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.

381:). 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. 196:

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.

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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.

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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.

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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.

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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.

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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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U.S. leader in online audio and video programs for patients hosted by Andrew Schorr, a medical journalist and 14-year leukemia survivor. Patient Power's reliable resources connect, educate, and empower patients to take a proactive role in their

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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.

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368:, to understand when and how to deploy technologies that assist in and improve peer health communication. At the same time, access and effective use by others may be restricted due to cultural, language, and other issues. 406:

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.

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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.

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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.

30:, and to connect with others in similar circumstances. These online groups can be composed of individuals with illnesses, groups of medical professionals with shared interests, non-professional 233:

health care utilization. Through improved access to personalized information, patient participation, and emotional support, online health communities promote patient centered care practices.

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medical provider empathy is costly and time-consuming. Perceptions of empathy from online health communities can act as a feasible replacement for provider empathy.

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whole. For example, influential users can help build and manage a community, provide marketing, initiate community driven campaigns, and disseminate information.

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and interact with other participants in meaningful ways. The successful design of such systems will be facilitated by collaborations among

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Despite the benefits that online health communities may provide, there are also several complications that they may pose.

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Online health communities not only can have psychological benefits, but they can also have benefits for health behaviors.

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Individuals access these communities searching for a variety of resources. Existing medical and health websites, such as

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information such as recommendations and feedback about certain medications or medical procedures.

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Montréal, Québec, Canada: ACM. 1701:AMIA Annual Symposium Proceedings 1202:Translational Behavioral Medicine 1789:Medical Care Research and Review 84:With the invention of email for 747:Computers, Informatics, Nursing 210:Interdisciplinary collaboration 1409:Retooling for an Aging America 974:Nambisan, Priya (2011-05-01). 701:CyberPsychology & Behavior 219:Medical professional knowledge 1: 2000:10.1016/j.jbusres.2011.08.009 1641:Health Care Management Review 1550:Journal of Surgical Education 1476:10.1016/s1474-4422(09)70327-8 1988:Journal of Business Research 1653:10.1097/hmr.0b013e3182099f82 1125:10.1016/0272-6386(93)70072-7 759:10.1097/ncn.0b013e318224b31d 2285:"Online Health Communities" 2134:10.1136/amiajnl-2013-002282 1881:Computers in Human Behavior 1596:"Online health communities" 1562:10.1016/j.jsurg.2010.12.011 1462:cluster-randomised trial". 993:10.1136/amiajnl-2010-000058 2376: 2021:Jinyang, Li (2015-03-18). 1848:10.1109/hicss.2004.1265462 1527:10.1001/jama.298.17.2071-a 1370:10.1177/193758670800100406 16:Type of Internet community 2319:Encyclopedia of Community 1893:10.1016/j.chb.2014.04.039 1214:10.1007/s13142-011-0016-4 1035:Journal of Macromarketing 596:Online Health Search 2006 497:Diabetes Hands Foundation 20:Online health communities 2242:10.1177/0193945913520414 1801:10.1177/1077558707305942 1267:10.1177/0163278704267037 1078:Journal of Social Issues 1047:10.1177/0276146714538055 2300:10.1145/1125451.1125549 2184:10.1145/2531602.2531622 1842:. IEEE. pp. 9 pp. 1758:10.1089/cyber.2012.0348 1608:10.1145/1125451.1125549 809:10.1145/2145204.2145331 624:Online Health Community 327:Adoption and engagement 237:Health care utilization 2310:; et al. (2018). 2283:; et al. (2015). 2086:10.1287/orsc.1050.0158 308:technological literacy 201:Institutional benefits 136:Psychological benefits 2360:Online support groups 1158:. IEEE. p. 483. 713:10.1089/cpb.2007.0118 228:Patient centered care 2074:Organization Science 1464:The Lancet Neurology 1164:10.1109/ichi.2015.82 872:10.2196/jmir.7.1.e10 656:10.2196/jmir.9.2.e12 320:personal information 148:Across a variety of 107:labs introduced the 598:Summary of Findings 499:(Social Networking) 439:Example communities 350:information quality 318:The sharing of any 183:Treatment adherence 175:Behavioral benefits 127:Beneficial Outcomes 264:Who benefits most? 2333:Patient Power LLC 2193:978-1-4503-2540-0 2127:(e2): e212–e218. 2040:10.3926/jiem.1389 1946:10.2196/jmir.1696 1617:978-1-59593-298-3 1426:978-0-309-11587-2 1324:10.2196/jmir.1338 1173:978-1-4673-9548-9 931:10.2196/jmir.2423 818:978-1-4503-1086-4 556:10.2196/jmir.2476 166:Perceived empathy 157:Disease knowledge 2367: 2355:Medical websites 2322: 2316: 2303: 2289: 2272: 2271: 2261: 2236:(9): 1183–1198. 2221: 2206: 2205: 2171: 2165: 2164: 2154: 2136: 2112: 2106: 2105: 2069: 2063: 2062: 2052: 2042: 2018: 2012: 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