Blogging and other social media channels are developing networks and knowledge amongst people living with diabetes.
Angela Mallon, from Diabetes Australia – Vic, reports on a diabetes social media summit, recently held in Melbourne.
She gives an example of important policy decisions being made without consumer input, and says social media is providing new opportunities for the voices of people living with diabetes to be heard.
Social media summit empowers members to advocate for improved healthcare solutions
Angela Mallon writes:
Australia is helping lead the way in developing online community support within the diabetes community. Diabetes Australia Vic recently hosted one of the first diabetes social media summits to be held outside the United States and the Australian online diabetes community is involved in the establishment of a network of world-wide support groups.
At present the Diabetes Online Community (DOC) is one of the world’s most vibrant and influential online communities for people living with a life-long health condition. In the USA, hundreds of diabetes bloggers provide information, support and advocate for improved healthcare solutions for those living with this condition.
Four months ago, Australia was one of the first countries outside the USA to develop its own Diabetes Online Community OzDOC.
OzDOC has a rapidly growing membership of people throughout Australia and the world joining in its own weekly ‘tweetchat’ on Tuesday evenings at 8.30 pm (AEDT).
Following the establishment of #OzDOC, other chats have started, including GBDOC (UK),CanDOC (Canada), #ESDOC (Spain), ITADOC (Italy) and (DEDOC (Germany).
Keynote speaker at the Australian social media summit was Kerri Sparling from the USA. Kerry is one of the first bloggers to enter the ‘diabetes blogosphere’ with her Six Until Me blog which started in 2005. Kerri is a regular speaker at social media and diabetes conferences and is a freelance writer and social media consultant.
In her presentation, Kerri talked about how after her diagnosis as a six year old, she found a support network when she attended camps for children with diabetes.
As an adult, however, she felt isolated and missed the opportunity to connect with people who were experiencing similar hopes, problems and fears that she had while living with diabetes.
She turned to blogging to share her story and hopefully hear from others:
“The first week, my mum and my husband were reading. But the next week there were more readers and more readers after that. Sharing stories, offering insight and providing support is what bloggers and their readers get – it’s a mutually beneficial activity!”
Kerri highlighted the importance of supporting others within the community, “each and every voice is important, but together it’s certainly more powerful,” she says.
Other important topics covered at the Summit included the importance of collaboration with healthcare professionals, industry policy makers and healthcare professionals. Diabetes is a self-managed condition and the person living with diabetes needs to be acknowledged as the expert.
The social media summit invited bloggers from all over Australia to get together to highlight the power of social media and illustrate how it can empower Australians living with chronic health conditions such as diabetes.
Often, the people who live with these conditions are the last people to be consulted (if at all) on health policy decisions.
A recent example of this happened in March this year when Austroads and the National Transport Commission released their updated Assessing Fitness to Drive; medical standards for licensing and clinical management guidelines. This document refers to commercial and private vehicle drivers, so the information is relevant to people living with diabetes that hold (or are planning to hold) a drivers’ licence.
Disappointingly, there was no consultation with consumers in the development of these guidelines. The diabetes chapter of the guidelines were reviewed by the Australian Diabetes Society Driving and Diabetes Working Party.
There was absolutely no engagement with any Diabetes Australia body across Australia, which meant that there was no one considering the consumer side of things.
Online communities like OzDOC allow people to collectively get their opinions heard and give a voice to the people who have the most interest and experience in how best to live with these conditions.
The consumer voice also needs to be heard in the upcoming review that The Department of Health and Ageing and the Pharmaceutical Benefits Advisory Committee will be undertaking in a review of products used in the management of diabetes. The review will address several different issues and the first stage will focus on the use of blood glucose monitoring and (the clinical outcomes) for people with type 2 diabetes not using insulin.
The online community in Australia has been vital in making people aware of this upcoming review, and has encouraged people who live with diabetes to directly contact the Department of Health and Aging to make their views count and have their say in policies that will directly influence the quality of their health care.
Policy makers and politicians in Australia need to acknowledge that social media has changed the world of communication and information.
Well-informed online communities are a valuable resource and should be an integral part of the decision making process when making changes to policies that affect their health care.