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Diabetes Online Communities summary


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Diabetes Online Communities summary

  1. 1. Diabetes Online Communities (DOC) DOC – An online site wheremembers – who are joined by a common interest -- cansupport, empower and educate each other free from outside scrutiny and influence • What is the value of DOC? – To People with Diabetes (PWD) – Support, empowerment, education, advocacy – To the Health Care Professional (HCP) – Same as PWD, but also business networking and getting insight into patient perspective of the disease • Key Features of DOCs – Identity and social connections – members create profiles,make online friends, and communicate with each other personally via wall posts and private messaging – Forums – Collections of topical group discussions that are open to all members – Groups – Private discussions between subsets of members, usually joined by a particular common interest – Other common features – Blogs, informational content, upcoming events, etc • Features to look for when evaluating a DOC: – Size – Larger communities develop a “wisdom of crowds” and serve a broader range of members – Benign rule – The DOC should show evidence of good leadership: it should have specific rules of conduct, effective moderation and administration, and be curated to prevent spam, bad advice, etc – Safety –The DOC should explain how it protects privacy andensures respectful behavior and misuse of personal information (such as sharing/selling information gathered viamember surveys without consent) – Reputation – the DOC should have a way for members to build identities and reputations to make it easy to determine who has a history of good contribution to the community (via post count, “likes,” etc) • Important Uses of a DOC – For PWD • Dealing with diagnosis and managing emotions – e.g. depression, guilt, blame and burnout • Community support from other people living with diabetes; belief that “you can do this” (see • Learning self-care behaviors that work (e.g. how to deal with exercise, how to cope with burnout) • Getting advice on subjects beyondHCPs’ expertise (e.g. navigating insurance) • Properly navigating health care (i.e. avoiding misdiagnosis, when and how to get a second opinion) – For HCP • Understanding the perspective and challenges of PWD • Understanding how to communicate better with patients, learning to put yourself in the patient’s shoes • Learning which types of support/information PWD are not getting from diabetes HCPs • Learning from patients (e.g. tips about how to live/cope with diabetes) • Proper use of DOC Sites – For PWD • Protect your privacy, if desired (i.e. not using your real name to remain anonymous) • Don’t use the DOC as a substitute for HCP • Respectthe rules/etiquette of the site – For the HCP • Identify yourselfand contribute to discussions where appropriate - converse and engage; don’t lecture • Respect the rules/etiquette of the site • Share your favorite DOCs with your patients as an additional resource • Established Codes of Conduct (note: just because a DOC does not have one of these certifications does not mean it’s untrustworthy or not worthwhile) – HONcode – Assurance of reliable health information and protection of the users. • Authority, Complementary, Confidentiality, Attribution, Justification, Professionalism, Transparency of Funding, Advertising Policy – eTrust – fundamental protection of privacy • Identity, personal information, safe shopping – Utilization Review Accreditation Commission (URAC) • Accredits adherence of health web sites to a specific set of standards • Oriented towards delivery of sound health care information
  2. 2. Top Patient Diabetes Communities and – ADA - Bernstein – For Women – Alliance Health - JDRF – T1DExchange DOC Identity Forums Groups Other Size Rule Safety Reputation Code of Conduct and Yes Yes Yes Yes 50,000 Yes Yes Partly HonCode Yes Yes Yes Yes 100,000 Yes Yes Yes No Yes Yes No Partly Partly Yes Yes HonCode Yes Yes No No 15,000 Yes Yes No No No Partly No Partly 23,000 Partly Partly No No Yes Yes No No 13,000 Yes Yes Partly HonCode Yes Yes No Yes Partly Partly Partly No Yes Yes No Yes 46,000 Partly Yes Yes No Yes Yes Yes Yes 307,000 Yes Yes Partly HonCode, Truste Yes Yes No Partly 68,000 Yes Partly Partly No Yes Yes No Partly 1,200 Partly Partly Partly No Yes Yes No Partly Yes Partly eTrust Yes Yes Yes Yes Yes Partly Partly No Yes Yes 6,500 No Yes Yes No Yes 50,000 Partly Partly Partly HonCode Partly Partly No Yes Small Yes Yes Partly HonCode, Truste, URAC Yes Yes No Yes Small Partly Partly Yes No Partly Simple No No Small Yes Yes Yes HonCode Yes Simple Partly Yes 66,000 Yes Yes Partly HonCode Yes Yes No Yes 13,000 Partly Partly Yes No