Diabetes Online Communities (DOC)

DOC – An online site where members – who are joined by a common interest -- can support, 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 and ensures respectful behavior and misuse of personal

information (such as sharing/selling information gathered via member 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

youcandothisproject.com)• Learning self-care behaviors that work (e.g. how to deal with exercise, how to cope with burnout)• Getting advice on subjects beyond HCPs’ 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• Respect the rules/etiquette of the site

– For the HCP• Identify yourself and 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

Top Patient Diabetes Communities

tudiabetes.org and estudiabetes.orgdiabetesdaily.comcommunity.diabetes.org – ADAdiabetes-book.com - Bernsteinchildrenwithdiabetes.comdiabetessisters.org – For Womendiabetesforums.com

diabetescommunity.dlife.comdiabetes.co.ukdiabetes-support.org.ukdiabeticconnect.com – Alliance Healthjuvenation.org - JDRFmyglu.org – T1DExchange

DOC Identity Forums Groups Other Size Rule Safety Reputation Code of Conducttudiabetes.org and estudiabetes.org Yes Yes Yes Yes 50,000 Yes Yes Partly HonCodediabetesdaily.com Yes Yes Yes Yes 100,000 Yes Yes Yes Nocommunity.diabetes.org Yes Yes No Partly Partly Yes Yes HonCodediabetes-book.com Yes Yes No No 15,000 Yes Yes No Noinsulin-pumpers.org No Partly No Partly 23,000 Partly Partly No Nochildrenwithdiabetes.com Yes Yes No No 13,000 Yes Yes Partly HonCodediabetessisters.org Yes Yes No Yes Partly Partly Partly Nodiabetesforums.com Yes Yes No Yes 46,000 Partly Yes Yes Nodiabetescommunity.dlife.com Yes Yes Yes Yes 307,000 Yes Yes Partly HonCode, Trustediabetes.co.uk Yes Yes No Partly 68,000 Yes Partly Partly Nodiabetes-support.org.uk Yes Yes No Partly 1,200 Partly Partly Partly Nodiabeticconnect.com Yes Yes No Partly Yes Partly eTrustjuvenation.org Yes Yes Yes Yes Yes Partly Partly Nomyglu.org Yes Yes 6,500 Nodiabetes1.org Yes Yes No Yes 50,000 Partly Partly Partly HonCodeexchanges.webmd.com/diabetes-exchange Partly Partly No Yes Small Yes Yes Partly HonCode, Truste, URACpresentdiabetes.com Yes Yes No Yes Small Partly Partly Yes Nomedhelp.org Partly Simple No No Small Yes Yes Yes HonCodedoctorslounge.com Yes Simple Partly Yes 66,000 Yes Yes Partly HonCodedietitiancentral.com Yes Yes No Yes 13,000 Partly Partly Yes No