Online health communities
Online health communities provide a means for patients and their families to learn about an illness, seek and offer support, and connect with others in similar circumstances.
Changes in the health care system coupled with increased infiltration and use of the Internet have resulted in heavier reliance on the Internet for disease and health education. Eighteen 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. Existing medical and health websites, such as WebMD and Health Cloud, have recognized that they will have more visitors if they offer interactive community features such as discussion or Internet forums.
Social networking and online communities have become popular for virtually all business and personal interests and needs. This trend has increased the expectation for and reliance on peer education and support for many areas, including medical, to precede, supplement, or, in some cases, replace, that of professionals. In many cases, people do not use the best judgment when relying on online communities, but the consequences of poor information depends on what the information is and how it is used. Peer reviews and ratings in an online bookseller at worst lead to a poor purchasing decision with the option for a return. Medical information can have graver 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 usability and sociability. Furthermore, patients and their families may be under stress and the emotional burden, which can diminish health literacy, necessitates more careful design and evaluation. In addition, disease and illness have no boundaries, and participants in online health communities can vary considerably in their medical expertise, health literacy, and technological literacy, as well as in their need for education and support about a disease or condition.
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; yet there is no prevailing wisdom on best practices in online health community design and researchers have not conclusively demonstrated the health benefits of online health communities. Despite limited research on health benefits, there are many situations where online health communities appear to aid patients. These benefits include improved quality of life, better decision making, and patients who feel less alone and more empowered. Indeed, 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. At the same time, access and effective use by others may be restricted due to cultural, language, and other issues.
For the benefits of online health communities to accrue, systems must be developed that are accessible, welcoming, easy to navigate and use, and able to help members discern information quality and interact with other participants in meaningful ways. The successful design of such systems will be facilitated by collaborations among clinicians, informed designers, and patients. 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 is seem 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 Web 2.0, to understand when and how to deploy technologies that assist in and improve peer health communication.
With the invention of email for ARPANET in 1972, communication through a computer to distant geographies became substantially easier. Listserve, 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 in medium because audiences could access static content more easily without the author’s knowledge or synchronicity in time. Further, the graphical nature of the World Wide Web made the exchange of more 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 predominate medium for ad hoc online health communities to form.
Examples of online health communities.
- Neal, Lisa; et al. (2015). "Online Health Communities". CHI’06 Conference on Human Factors in Computing Systems. Montréal, Québec, Canada: ACM.
- Preece, Jenny; et al. (2018). "History and emergence of online communities" (PDF). Encyclopedia of Community. Thousand Oaks, CA , USA: Berkshire Publishing Group, Sage.
- Patient Power LLC 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 healthcare.
- Online Health Communities Researcher Exchange