Online Health Communities
Encyclopedia
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.
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 websites, such as WebMD
, 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.
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.
Overview
Changes in the health careHealth care
Health care is the diagnosis, treatment, and prevention of disease, illness, injury, and other physical and mental impairments in humans. Health care is delivered by practitioners in medicine, chiropractic, dentistry, nursing, pharmacy, allied health, and other care providers...
system coupled with increased infiltration and use of the Internet
Internet
The Internet is a global system of interconnected computer networks that use the standard Internet protocol suite to serve billions of users worldwide...
have resulted in heavier reliance on the Internet for disease and health education
Health education
Health education is the profession of educating people about health. Areas within this profession encompass environmental health, physical health, social health, emotional health, intellectual health, and spiritual health...
. 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 websites, such as WebMD
WebMD
WebMD is an American corporation which provides health information services. It was founded in 1996 by Jim Clark and Pavan Nigam as Healthscape, later Healtheon, and then acquired WebMD in 1999 to form Healtheon/WebMD...
, 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
Usability
Usability is the ease of use and learnability of a human-made object. The object of use can be a software application, website, book, tool, machine, process, or anything a human interacts with. A usability study may be conducted as a primary job function by a usability analyst or as a secondary job...
and sociability. Furthermore, patients and their families may be under stress and the emotional burden, which can diminish health literacy
Health literacy
Health literacy is an individual's ability to read, understand and use healthcare information to make decisions and follow instructions for treatment...
, necessitates more careful design and evaluation
Evaluation
Evaluation is systematic determination of merit, worth, and significance of something or someone using criteria against a set of standards.Evaluation often is used to characterize and appraise subjects of interest in a wide range of human enterprises, including the arts, criminal justice,...
. In addition, disease and illness have no boundaries, and participants in online health communities can vary considerably in their medical expertise, health literacy
Health literacy
Health literacy is an individual's ability to read, understand and use healthcare information to make decisions and follow instructions for treatment...
, 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
Quality of life
The term quality of life is used to evaluate the general well-being of individuals and societies. The term is used in a wide range of contexts, including the fields of international development, healthcare, and politics. Quality of life should not be confused with the concept of standard of...
, 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
Information quality
Information quality is a term to describe the quality of the content of information systems. It is often pragmatically defined as: "The fitness for use of the information provided."- Conceptual problems :...
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
Web 2.0
The term Web 2.0 is associated with web applications that facilitate participatory information sharing, interoperability, user-centered design, and collaboration on the World Wide Web...
, to understand when and how to deploy technologies that assist in and improve peer health communication.
History
With the invention of email for ARPANETARPANET
The Advanced Research Projects Agency Network , was the world's first operational packet switching network and the core network of a set that came to compose the global Internet...
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
Usenet
Usenet is a worldwide distributed Internet discussion system. It developed from the general purpose UUCP architecture of the same name.Duke University graduate students Tom Truscott and Jim Ellis conceived the idea in 1979 and it was established in 1980...
provided the tools for rudimentary online communities to begin to coalesce around health related topics.
In 1991 CERN
CERN
The European Organization for Nuclear Research , known as CERN , is an international organization whose purpose is to operate the world's largest particle physics laboratory, which is situated in the northwest suburbs of Geneva on the Franco–Swiss border...
labs introduced the World Wide Web
World Wide Web
The World Wide Web is a system of interlinked hypertext documents accessed via the Internet...
, 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.
External links
- 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