Demiris, G. (2006). The diffusion of virtual community in health care:  Concepts and challenges.  Patient Education and Counseling, 62, 178-188. 

Literature Review

• virtual community - social unit using technology to communicate over sometimes large geographic distances
  • traditional communities assume physical proximity, whereas virtual ones do not
  • does not preclude but does not require face-to-face interactions
• ACM computer human interaction conference - core attributes
  • shared goal/interest/reason for getting together
  • ongoing and active participation
  • shared resources
  • policies for types and frequency of access
  • reciprocal interactions and sharing of information, support, and services
• health care virtual community
  • related to health and health education
    • delivery of services
    • patient education
    • support
    • discussion
    • documents
    • consultation
    • relationship-building
  • members
    • professionals
    • patients/informal
    • mix of the above
    • public access
  • virtual teams - can help with case management and continuity of care
  • can also function as self-help groups
    • can work in the same ways that traditional self-help groups work (research)
    • foci
      • problem solving
      • information
      • expression
      • support
      • empathy
  • can help with "disease management"
  • communication among professionals and caregivers
  • some open to the general public - can participate without being an "official" member
• technology - message boards, asynchronous communication, videoconferencing, chat, chat rooms
  • some are not moderated - relys on the mores of the group for cohesion and rule setting and monitoring
• Current paper - literature review of virutal health care communities
• Method
  • included all types of methodologies
  • only published in English
  • virtual communities - any technology
  • searched medical and social science literature
    • Medline
    • Embase
    • PsycInfo
    • web of science
    • Computer and Information Systems Abstracts
• 56 studies included - 9 excluded due to no participants
• Virtual Health Care Delivery Teams
  • complex health problems - require multidisciplinary support to address care
  • virtual health care teams - overcome practival concerns to case coordination (geography, scheduling, etc...)
  • Lorimer and Manion define as a small number committed to same goal and approach, complimentary skills
  • Heinemann - 4 domains of team function
    • structure
    • context (larger institution)
    • process - functioning - this one would be different for virtual teams - could be synchronous or asynchronous
    • productivity - different process could lead to increased productivity? NOT SUPPORTED BY REFERENCES
    • cost-effectiveness - could get expensive.
  • Pitsillides et al. - patient-centered treatment network for treatment of cancer
  • Telehospice Project at the University of Missouri - allowed for patients to attend interdisciplinary planning meetings and be more involved in their end-of-life decisions and care
  • what about the security of data?
  • what about access?
• Virtual research teams
  • can exchange information and data internationally
  • Comprehensice Health Enhancement Support System (CHESS) - University of Wisconsin
    • public access to information, social support, and decision-making information
• Virtual Disease Management
  • management of diagnoses that require large amounts of self-care
  • can help with communication and reduce complications - increasing positive outcomes
  • link home with hospital and sub-acute care
  • exchange information between family members and patients
  • can be done with common and commercially available items
  • effective in the management of
    • cancer
    • diabetes
    • asthma
  • can monitor symptoms and side effects of treatments from a remote location as well as nutrition and holistic variables
• patient and caregiver peer-to-peer applications
  • P2P - all members are equal and can join and leave of their own volition
  • PeerLink - for individuals with disabilities
  • issues
    • third-party applications - cost and access
  • Yahoo! health communities - in the tens of thousands regarding health care alonge
  • Sharf - what are the types of communication taking place online? (Breast Cancer support)
    • exchange of information
    • social support
    • personal empowerment
  • P2P is a community by all definitions (standard and otherwise)
  • Hoybe et al. - women in a Scandanavian Breast Cancer support group - empowered by knowledge exchanges
  • Tate et al - email counseling increased weight loss support
  • Houston and Cooper - can help with individuals with depression
  • not a lot of information about groups led by consumers - self-help groups - usually looked at as a treatment package
• ethics
  • groups are often international
  • are interpersonal relationships becoming dehumanized? No human contact?
  • is anonymity a good thing or a bad thing?
  • called disembodied
  • no specific ethical guidelines for the provision of virtual care are available (2006)
  • American Telemedicine Association - clinical guidelines
  • How do we license and monitor what is being provided online?
• Communication - what are the qualities of the communication being seen online?
  • information exchange
  • encouragement and support
  • opinion and experience
  • studying threads qualitiatively could give insight
  • Burnett - two types of participation
    • lurker
    • active participant - can be supportive or provocative
• Identity and deception
  • there are communication styles that give a clue as to who a person is - not the most reliable, but have sniffed out some deceptors
  • impersonation has not been studied a lot in virtual environments
    • Joan - supposedly disabled and disfigured - actually a psychiatrist
      • outrage
      • betrayed
      • mourning loss
    • Barbara/Amy - CF
      • stated that Barbara had passed away - actually the same person - identity clues
• Privacy and confidentiality
  • HIPAA
  • who owns the data, and who can have access to it?
  • Google health care
  • How secure are online environments?
  • Third party applications have access to the data
    • we need to look at how we secure the data
    • how do we look at the issue of informed consent as well?
• Digital Divide
  • many applications are coded for broadband access - interactive web applications do not work well with narrow-band
  • not only infrastructure but also design
    • 508 access and usability
    • a large issue for the aging population online
    • could end up isolating and increasing the digital divide
• Liability issues
  • no regulations for virtual malpractice
  • who is licensed to practice where and with whom?
  • Legal system not yet equipped to deal with this
• Sociability and usability
  • socialbility - does it meet the goals and purpose of the community?
  • what are the rules and policies?
  • usability - accessibility and design
    • some older people - also have functional limitations that impede access
    • software and hardware - forget about these people
    • web-based design a big consideration
    • need to make sure that applications are tested
• Most resarch is pilot - not a lot of rigorous studies about issues regarding virtual health care
• need to also document specifically how the communities operate
• how can we assess patient empowerment (valid and reliable tools)
• Virtual communities - shift to patient-centered care structures - will affect how everyone practices