Web-based Communities and Healthcare
Eman Anis Daoud
Course: INSS 687
Instructor: Dr. Dessa David
Course: INSS 687
Instructor: Dr. Dessa David
Introduction
The internet has become very important for people and organizations. People use internet in work, in business and social communication, in searching for information, in knowing the world news, and in shopping. Profit and nonprofit organization use internet to foster their businesses and to have competitive advantages. An additional advantage of the Internet is the web-based communities that allow people to communicate and share their experience and information with each other. Communities can be described as any group of people who have a common interest and can involve in information sharing, real-time dialog, and transaction facilitation.
There are web-based communities for healthcare that offer medical information to people. In the past few years, the number of people who have been accessing health-related web based communities has increased. These communities have a wide variety of health care topics about different kinds of diseases. For instance: Cancer, Asthma, Alzheimer’s, Arthritis, Back pain, Heart disease, Heartburn/GERD, Diabetes, etc. Also, they have discussion forums for not only patients to share their feeling and symptoms, but also for doctors and patients. Some physicians are members of these health-related web-based communities, and they can answer patients’ questions about their symptoms. Healthcare communities have become online place to comfort people and to contribute in the self-management of acute or chronic diseases.
What is web-based community?
A web-based community can be defined as a group of people who have common needs and interests, and they can interact and collaborate through the Internet without barriers of time and place. Transmission of ideas and information in an on-line mode is rapid and available regardless of how geographically dispersed community members are [Marshall-2000]. The interesting thing about on-line communities is that they are not only places for communication but also for offering a variety of topics on the specific issues of interests to the community members. This is the definition of online community developed by [Preece-2000].
An online community consists of:
• People, who interact socially as they strive to satisfy their own needs or perform special roles, such as leading or moderating.
• A shared purpose, such as an interest, need, information exchange, or service that provide a reason for the community.
• Policies, in the form of tacit assumptions, rituals, protocols, rules, and laws that guide people’s interactions.
• Computer systems, to support, and mediate social interaction and facilitate a sense of togetherness.
The internet has become very important for people and organizations. People use internet in work, in business and social communication, in searching for information, in knowing the world news, and in shopping. Profit and nonprofit organization use internet to foster their businesses and to have competitive advantages. An additional advantage of the Internet is the web-based communities that allow people to communicate and share their experience and information with each other. Communities can be described as any group of people who have a common interest and can involve in information sharing, real-time dialog, and transaction facilitation.
There are web-based communities for healthcare that offer medical information to people. In the past few years, the number of people who have been accessing health-related web based communities has increased. These communities have a wide variety of health care topics about different kinds of diseases. For instance: Cancer, Asthma, Alzheimer’s, Arthritis, Back pain, Heart disease, Heartburn/GERD, Diabetes, etc. Also, they have discussion forums for not only patients to share their feeling and symptoms, but also for doctors and patients. Some physicians are members of these health-related web-based communities, and they can answer patients’ questions about their symptoms. Healthcare communities have become online place to comfort people and to contribute in the self-management of acute or chronic diseases.
What is web-based community?
A web-based community can be defined as a group of people who have common needs and interests, and they can interact and collaborate through the Internet without barriers of time and place. Transmission of ideas and information in an on-line mode is rapid and available regardless of how geographically dispersed community members are [Marshall-2000]. The interesting thing about on-line communities is that they are not only places for communication but also for offering a variety of topics on the specific issues of interests to the community members. This is the definition of online community developed by [Preece-2000].
An online community consists of:
• People, who interact socially as they strive to satisfy their own needs or perform special roles, such as leading or moderating.
• A shared purpose, such as an interest, need, information exchange, or service that provide a reason for the community.
• Policies, in the form of tacit assumptions, rituals, protocols, rules, and laws that guide people’s interactions.
• Computer systems, to support, and mediate social interaction and facilitate a sense of togetherness.
Evolution of technology that supports online communities
Email was developed by APRA net in 1972 and it is the first and still common way of communication via Internet. In the early systems communication was point to point which means that one person could send a note to other one person. Until 1975, Listservers which allow many postings were not invented. There are two ways for Listservers to be used, one is trickle through and the other is digests. Trickle through systems distribute each message as it is received. Digests comprise a list of messages one after the other in chronological order. In the mid of 1980s, systems with improved graphical user interfaces started to appear.
Bulletin boards were designed at the same time of email. People can post messages to the board and they are presented in various ways. The messages should be on the same topic. The first message forms the beginning of the thread and responses are followed it.
Usenet News, which is similar to a bulletin board and provides open areas for discussion of topics organized in hierarchies. People can read messages and respond to them later, may be after hours, weeks, or months.
Chat systems, which consist of instant messaging and texting systems, but the response to those messages should be in the same time. Usually, conversations are rapid and each individual message is short. In 1988, Internet Relay Chat (IRC) was developed by Jarkko Okarinen. Instant messaging made known by ICQ and AOL Instant Messenger.
In 1991, the World Wide Web (WWW) was developed by Tim Berners-Lee, and released by European Organization for Nuclear Research (CERN). Then the widespread use of web sites and the development of online community groups supported by web pages and different forms of communication software have been increased.
Internet telephone, streaming video, photographs, sound, voice, web cam, blogs, and wikis are all available technologies that can be used by online communities. “As computers morph and migrate into all kinds of places ‘ubiquitous computing’, online communities will have to contend with smaller devices, and therefore, WebPages will have to be adaptable to accommodate various sizes of screen displays and bandwidth.”
Foundations of On-Line Communities
There are seven foundations elements that support on-line communities’ development as follows:
1. Mission and Focus: an online community’s mission has to focus on the community members’ needs and interests. “An on-line community's mission and purpose need to closely parallel the needs of the targeted demographic group” [Andrews et al 2002]
2. Content: online community should provide information-rich content on the specific topics of interest to the community members. Community members want to find valuable information for their interested topics, and they would like to have the most recent information. [Bellini et al 2003] list the following content tools and services that can support communities: on-line training, library and news services, analysis of community-related themes, forum and chat tools, bookmark management, advertisements, search engine, electronic commerce, auction services, and calendar for community events.
3. Sociability: an online community is considered as a social interaction place where people feel comfortable communicating with each other. “On-line communities often use anonymity as a way to help members to feel comfortable contributing their ideas” (Cothrel et al -1999]
4. Roles: there are policies and roles to support and guide online community interaction between community members.
5. Technology and Usability: online community members have to be able to use community browsers easily. “Any Web-based community should be easy to navigate and invoke on browsers and accommodate the wide breadth of bandwidths and communication infrastructures.” [Bellini – 2003].
6. Trust: trust should be established not only between web-based community members, but also between members and the community owner. Members should know and trust that their community will protect their personal information.
7. Participation motivation: an online community will be successful, if its members participate in a regular base. In order to motivate community members, community managers should identify members’ needs, value desired and basics for participation.
Challenges in creating and maintaining on-line communities
According to Schwartz et al., American corporations have invested $300 million in setting up and managing on-line communities [Schwartz-2001]. Web-based communities are more unstable and have shorter life time than face to face communities because the barrier to leave one community and join another is low. On-line relationships are more easily replaced (by click of a mouse) than in the face-to-face world [Driskell – 2002]. Therefore, online communities’ management is very challenging because of the volatility of membership.
In order to build a successful web-based community, it must have some characteristics to keep and attract people. This includes "appropriate informational content, selecting the right on-line community technology, attracting people to the community, encouraging continued participation, and evolving the right balance of fact-finding and empathetic opportunities" [Andrews et al - 2002.]
Not all people are open to use online communities even though they use the Internet for surfing the web, checking e-mail, and reading the news. According to the Pew Internet and American Life Project survey in 2003, only 52% of rural residents use the Internet, compared to 67% of urban and 66% of suburban residents.
Although, online health communities have achieved success during the past few years, there are many concerns about the quality of online consumer health information. Of course there is a possibility for people to find poor information, but every person has to make sure of the credibility of his/her reading source. Most of the articles that are published on healthcare web-based communities should mention their sources. For example: when a patient visits WebMD to find some information for asthma, WebMD will mention the sources of any asthma article at the end of it.
Benefits of healthcare web-based communities
Online healthcare communities can be accessed from anywhere in the world at any time. When people who have any concern about a medical issue whether it is serious or not, they can visit online communities at any time. They don’t need to wait to call a doctor or a friend at an appropriate time to ask him/her, but they can visit any one of the online communities 24/7 to find an answer about their concerns.
Nowadays, many people consider the internet as a huge source of information that can educate them and provide them with the desired information that will not be available from doctors. Almost 80% of the World Wide Web users have used it to search for information about health. They feel that the internet is the first place to visit before even see physicians. Web-based communities for healthcare have a big impact to provide patients with information from different resources. Patients have many choices when they visit online healthcare communities. They can read articles about any health problem, they may communicate with other patients who have the same symptoms, or they can ask questions to specialized doctors.
On healthcare web-based communities, exchange knowledge between patients help them to cope with complex health issues. For instance, when someone has HIV and he/she embarrassed to communicate with people face to face, online communities will help him/her to deal with this disease. A patient can find support from other patients who have the same disease, and also from physicians who will answer any question. “The international possibilities of virtual communities allow individuals with rare diseases to find peer support and allow all users to draw on a wide range of health perspectives and experience.”
Some people find that visiting online health communities is more comfortable especially when dealing with sensitive topics. Adolescents or adults believe that online communication make it easier to express their emotions and their feelings. “Emotional support, affirmations, encouragement, understanding and empathy are the most frequent type of social support given in online communities.” [Preece – 2001]
Because of the availability of specialist knowledge about any disease online, patients have become more involved in healthcare decision-making. Two thirds of patients who surf the web to find health information claim that internet affects their healthcare decisions. Patients are no more ignorant about medical issues, now they can print out article from the internet about their symptoms to discuss it with their physicians. “The internet offers the potential for patients to become more involved in their own care, learning about their condition, accessing and contributing to their online health record, and interacting with health services—for example using shared decision-making tools.”
Key players
1. WebMD [http://www.webmd.com/]
2. Medhelp.ORG [http://www.medhelp.org/]
3. Steady Health [http://www.steadyhealth.com/]
4. Revolution Health [http://www.revolutionhealth.com/]
5. Health Talk [http://www2.healthtalk.com/]
6. Health Line [http://www.healthline.com/]
7. Health Central [http://www.healthcentral.com/]
8. iVillage Your Total Health [http://yourtotalhealth.ivillage.com/home]
WebMD
WebMD is one of the best online healthcare communities that offer a wide variety of healthcare information almost about every health issue. It provides credible information, supportive communities, and in-depth reference material about heath subjects. WebMD is not only a source for original and timely information but also material from well known content providers.
WebMD has got many awards in 2008 because it is considered one of the top health information websites. People who work for WebMD have to be full time professional and expertise in Health news for the public, Creating and maintaining up-to-date medical reference content databases, Medical imagery, graphics, and animation, Communities, Live web events, User experience, and Interactive tools. WebMD’s staff includes individuals who hold advanced degrees in journalism, medical illustration, health communications, clinical informatics, nursing, and medicine. These are the awards it has got so far in 2008 according to: [http://www.webmd.com/about-webmd-policies/awards]
Online Journalism Awards
· Winner of the Specialty Site Journalism award
Webby Awards
· People's Voice Winner, Health category.
World Wide Web Health Awards
· Gold medal in the Advertising/Marketing Information.
· Gold medal in the Health Promotion/Disease and Injury Prevention.
· Gold medal in the Patient Education Information.
eHealthcare Leadership Awards
· Gold award for Best Overall Internet Site.
· Gold award for Best Health Content.
· Silver award for Best Site Design.
WebMD Health Centers: these centers are specialized for different kind of diseases that are full of a variety of information about those diseases. For instance: asthma, arthritis, allergies, cancer, cold & Flu, Digestive disorders, and Diabetes. A center provides patients with all the information about a specific disease such as symptoms, diagnosis, treatment, news about this disease, questions and answers, discussion forum, and all related medications.
Healthy Living Centers: these centers offer information about living a healthy life and avoiding diseases. For example: Children’s health, fitness and exercise, pregnancy, men’s health, diet and nutrition. A center provides news, videos, questions and answers, different articles about the chosen topic, and discussion forum.
Health Care Services: WebMD offers services to help patients and healthy people. Examples of these services are a guide to find a doctor, good insurance, and a hospital.
Community: It includes message boards, blogs, heath experts, and questions & answers. Message boards and blogs have different kinds of online communities that cover topics from A-Z. Health experts (physicians) answer patients’ questions on message boards on any concerning topic.
Survey about online health communities
In March 1998, a survey was done by Tom Ferguson M.D., senior associate at Boston's Center for Clinical Computing and William Kelly, co-founder and executive vice president of Sapient Health Network, Inc., according to BW Health Wire. The topic name is “Online Health Communities Rated High”, and it was published in About.com.
The survey shows how online health information and support communities are more helpful than either specialist or primary care doctors. These are the specific areas that online communities received the superior rating.
Convenience
Emotional support
Compassion / Empathy
Best source of medical referrals
Best source of in-depth information about the condition
Best source of practical coping tips for the condition
The results of this survey according to About.com:
1. online health communities have emerged as valuable resources of:
health information
self-help
mutual support
2. The computer age has narrowed the physical distance between people in need of:
support
understanding
advice
3. Online subscribers have the ability to conveniently reach out to people across the country and across the world. The compassion which exists among people with same or similar illnesses is unique, and issues and concerns in common can be:
shared
discussed
sometimes solved
4. Online Health Communities are best at what doctors are worst at and vice versa. In real life, the best healthcare consists of a combination of physicians and online support communities. Many of the information and support that online communities offer are those that many doctors are unable or unwilling to provide.
Conclusion
In conclusion, internet has a significant impact on people, and different industries. After the evolution of technology and creation of online communities, people life has changed for the good. As mentioned above, online health care communities improve people health and comfort them. The availability of information and sharing experience with other people help patients cope with their diseases. In the coming years, patients are no longer unaware of medical issues because of the huge source of heath information. Online health communities not only educate patients, but also allow them to be involved in healthcare making decisions.
References:
1. [Marshall-2000]. Virtual communities and their network support: A cybernetic analysis. Cybernetics & Systems. 31(4), p.397
2. [Preece-2000] Online Communities: Designing Usability, Supporting Sociability. Chichester, UK: John Wiley & Sons.
3. [Preece – 2003] Preece, J., Maloney-Krichmar, D. and Abras, C. (2003). History and emergence of online communities.
4. [Kallioranta – 2006]. Web-Based Communities as a Tool for Extension and Outreach. Journal of Extension. Volume 44, Number 2, Article Number 2FEA4. Retrieved from: http://www.joe.org/joe/2006april/a4.shtml
5. [Andrews et al 2002]. A conceptual framework for demographic groups resistant to on-line community interaction. International Journal of Electronic Commerce, 6(3), 9
6. [Bellini et al 2003]. Rationale for Internet-mediated communities. CyberPsychology & Behavior, 6(1), p.3.
7. [Cothrel et al1999]. On-line communities. Knowledge Management Review, 1(6), p.2
8. [Bellini – 2003]. Rationale for Internet-mediated communities. CyberPsychology & Behavior, 6(1), p.3.
9. [Schwartz – 2001]. Real community is possible. Business 2.0. 6(5), p.64
10. [Driskell – 2002]. Are virtual communities true communities? Examining the environments and elements of community. City & Community, 1(4), p.373
11. [Andrews et al – 2002]. A conceptual framework for demographic groups resistant to on-line community interaction. International Journal of Electronic Commerce, 6(3), 9
12. [Preece – 2001] Observations and Explorations of Empathy Online. Retrieved from: http://www.ifsm.umbc.edu/~preece/paper/17%20ricekatz11.pdf
13. [Powell – 2003]. The doctor, the patient and the world-wide web: how the internet is changing healthcare. Journal of the Royal Society of Medicine. Volume 96. Retrieved from: http://jrsm.rsmjournals.com/cgi/content/full/96/2/74#SEC2
14. [Maloney – 2002]. The Meaning of an Online Health Community in the Lives of Its Members: Roles, Relationships and Group Dynamics Social Implications of Information and Communication Technology. 2002 International Symposium on Technology and Society ISTAS’02, 20-27.
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