Online discussions about diabetes started in the 1980s but dramatically
increased in the 2000s. In 2005, the term “diabetes online community” (“DOC”
for short) was coined to refer to online forums and content for people with
diabetes and their families. Today, some online diabetes forums are accessed by
over half a million unique users every year. The National Institutes of
Diabetes and Digestive and Kidney Diseases supported work on a paper that would
introduce readers to the DOC and discuss reasons for, risks associated with,
and research related to the DOC. This article summarizes information from the
published paper.
 |
| Zazzle |
Why
are people turning to the internet for health care support? People with diabetes who follow
recommendations for health care visits see their diabetes care team quarterly,
which is four times more often than most healthy adults. Still, those visits
amount to only a few hours of direct care a year. The Diabetes Hands Foundation
uses a symbol adapted from the International Diabetes Foundation’s universal
symbol for diabetes. It shows a tiny white sliver in the otherwise blue circle,
representing the proportion of time spent with a medical professional each
year. The remaining blue represents over 8,000 hours per year during which
people have to self-manage their diabetes. It is used to show that peer support
from the DOC may be a helpful supplement to medical care so people do not feel
alone in managing their diabetes.
Peer support is one
of the most common reasons people participate in the DOC. People often feel
more comfortable sharing with others who have similar experiences. While some
might argue that face-to-face support is best, most people have easier access
to the internet. The Pew Research Center reports that 88% of adults use the
internet daily and 77% own smartphones.2 Online activities are more
prevalent than ever before and are important to everyday health care for many
individuals and families affected by diabetes. In addition to the reasons
above, people use the DOC for local and global advocacy, self-expression,
information and education, data management, and humor.
Who
is using the DOC?
Most participants are adults with type 1 diabetes and parents of children with
type 1 diabetes. However, individuals with type 2 diabetes, latent auto-immune
diabetes of adulthood (LADA), and gestational diabetes are also involved. Some
health care providers and industry representatives are active in the DOC, as
well. The percentages of one online community (TuDiabetes.org) and its Spanish
language counterpart (EsTuDiabetes.org) are interesting to note. 50% of the
English site’s users have type 1 diabetes, while 20% have type 2 diabetes, and
30% are described as other. The Spanish site is the opposite, with 50% of its
users having type 2 diabetes, 20% having type 1 diabetes, and 30% described as
other.
How
do people participate in the DOC? Some
post original content, while others repost the content of others, comment on
postings, or simply read posted content. The DOC is made up of many venues:
·
Community
forums
·
Blogs
·
Videos
·
Podcasts
·
Social
media platforms
·
Advocacy
and professional organizations
·
Online
e-magazines and news
·
Offline
contact initiated through DOC activities
What
risks are associated with the DOC? As
with most online interactions, there are potential risks regarding privacy and
security, bad behavior, misinformation, and influence from industry. A study
found that online information about various health conditions was accurate only
40% of the time. Fortunately, many websites within the DOC are moderated to
reduce these risks. Specific guidelines for patients and families new to the
DOC, health care professional participation in the DOC, and industry
representatives on the DOC are available at DOC (Tables 2-4).
What
are some of the trustworthy DOC websites? There are hundreds of reputable sites. This is a list
of some of them that a group of people with diabetes and diabetes educators
developed for the Diabetes Hands Foundation:3
Community forums
Children with Diabetes (for parents)
·
Diabetes Daily (all types of diabetes)
·
Diabetes Sisters (women with diabetes)
· Diabulimia Helpline (for diabetics with eating
disorders)
· My Glu (access through T1D exchange)
· Tu Diabetes (all types of diabetes)
· Es Tu Diabetes (Spanish language community)
Advocacy and
professional organizations
·
Diabetes Advocates (a program of the Diabetes Hands
Foundation)
·
American Diabetes Association (ADA)
·
College Diabetes Network (CDN)
· National Diabetes Education Program (NDEP)
Personal blogs
·
Kerri Sparling (t1 adult female patient opinion
leader)
·
Scott Johnson (t1 adult male patient opinion
leader)
·
Kim Vlasnik(t1 adult female patient opinion
leader)
·
Lorraine Sisto (parent of a t1 son)
·
Kate Cornell (t2 adult female)
·
The Type 2 Experience (t2 adult bloggers)
Online e-magazines
and news sources
·
DiaTribe
What
does research say about the DOC? Research
specific to the DOC is limited. When it has been included in research, it has
typically been part of larger interventions and involved only moderated
activities. Studies of online resources for people with diabetes or other
health conditions have generally found that participants report improvements in
knowledge, emotional and social well-being, and confidence in managing their
condition. Use of online resources may also increase communication between
patients and their health care providers and have a positive impact on those
relationships.
Current recommendations
are that people with diabetes use the DOC for information and empowerment and
that health care providers also become involved in the DOC (following
guidelines for their protection) so they may gain insight into how people
self-manage their diabetes.
By: Cassandra
Vanderpool, MS, RDN, LD
Extension
Diabetes Coordinator
No comments:
Post a Comment