LONDON — The benefits of social media far outweigh the risks, and physicians and other healthcare providers should join the droves of diabetes patients taking to Twitter and other social-media platforms, because there is a lot to be learned, say a group of doctors and nurses who have embraced this new technology wholeheartedly.
Speaking at a session at the Diabetes UK Professional Conference in London earlier this month entitled "Social Media: Why Bother With a Fad?" Dr Partha Kar, clinical director of diabetes, Portsmouth Hospitals NHS Trust, United Kingdom, told attendees that of a 7.2 billion worldwide population, two billion have active social-media accounts, so "this is here to stay."
One fantastic opportunity that social media affords endocrinologists is the ability to "learn from our patients," said Dr Kar.
"We can listen and learn, hear the patients' frustrations — it's up to us to embrace this and see what can be used to help patients," he noted.
At the same time social media can be used for continuous professional development, to link with relevant organizations, and to pick up tips. "If you are following the right people you will learn a lot of things," he observed.
For those who may be initially nervous, Dr Kar recommends "starting off by just observing; watch some conversations and see what you pick up."
Or for those not wishing to dive straight into a site such as Twitter, he recommended reading some patient blogs, starting a Facebook page, or accessing relevant Facebook pages, which are more restricted in terms of who can access them than an open site such as Twitter.
Of course there are risks, he said, such as the urge to get too involved, to give clinical advice, or express opinions that are too personal. But broadly speaking, a few ground rules can help. "First, never tweet or blog when you are drunk," he advised; otherwise, health professionals should observe the same rules they would in the offline world — never give very specific clinical advice in these spaces and never breach confidentiality
Dr Kar also stressed that it is important to consult the institution the health professional is employed by with regard to any code of conduct they may have with regard to social media.
Great Emotional and Practical Support for Patients
Anne Cooper (NHS England), a diabetes nurse who also has type 1 diabetes (@anniecoops), outlined the fantastic support that can be garnered from social media as a patient.
After years of struggling with their diabetes alone, many patients have suddenly been able to connect with hundreds or in some cases thousands of other patients with diabetes from around the world, she noted.
And although mental health, breast cancer, and rheumatoid arthritis have a reputation for being the strongest disease areas on social media, "diabetes is now starting to create its own energy," said Ms Cooper.
Similarly, Roz Davies, MD, who also has type 1 diabetes, said social media provides "a sense of community, the strength of support networks, and empathy," for those affected (@roz_davies and rozdavies.wordpress.com).
These aspects of care, she says "are undervalued in the healthcare community."
Social media allows patients with different needs to communicate and adds value to what is happening offline; it provides education, emotional and social support, and shared experience and understanding and helps build confidence and a sense of purpose, Dr Davies said.
And in a practical sense, it can help patients find out about services, kits, and accessories and aid in people coming together to make positive changes, removing geographical, cultural, and administrative barriers.
There are, said Dr Davies, around 60,000 online diabetes communities and around 80 million online patient communities.
Turning Around a Diabetes Diagnosis with the Help of Social Media
Also illustrating the power of social media, type 1 diabetes patient Laura Cleverley from Fareham in Hampshire told her inspiring tale, stressing how much this engagement has helped her to embrace her diabetes and interact with her caregivers.
Now 28 years old and a student nurse, Ms Cleverley was just 16 when she was first diagnosed with type 1 diabetes, following a couple of years of misdiagnoses.
"I ignored my diabetes for 10 years after my diagnosis," she told delegates. This resulted in "repeated admissions for diabetic ketoacidosis: it became routine and felt normal — every 6 months I'd be hospitalized. I would take long-acting insulin once or twice a week, but that's all I did."
Ms Cleverley was shocked into action when ophthalmologists told her she had stage 4 retinopathy and that if she didn't start to take control of her diabetes she would be blind within a year.
Through her use of Twitter (@ninjabetic1), Ms Cleverley explained that she was able to embrace learning opportunities and move away "from the traditional role of the patient."
"As a patient, it's important for me to know that there are dedicated healthcare professionals out there, and we need them to move with us.
"Just try to suggest [social media] to your patients and see how it could benefit them — it could make big waves," she advised physicians in the audience.
Since engaging with social media and her own care, Ms Cleverley has reduced her HbA1c from 15% to 8%, she knows which of the 15 healthcare essentials she needs, and has a greater understanding of how to improve self-management and how to avoid complications, and she is helping to create and develop diabetes services in her area.
And importantly, her retinopathy is now dormant.
This year was her third in a row of speaking to endocrinologists at the Diabetes UK Professional Conference and, in November, she will speak at the World Diabetes Congress in Vancouver about the use of social media in diabetes care.
"We can embrace technology together and build trusting relationships." Doctors and others "can gain feedback from the people their services are created for," and they can "engage patients to gain insight into their needs," she stressed.
And finally, one often-overlooked strength of social media is to help point patients in the direction of "trusted information," when very often they have used "Dr Google" and gotten misinformation, she concluded.
Diabetes UK Professional Conference. March 11–13, 2015; London, UK.
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Cite this: Social Media Use in Diabetes: A Fad, or Here to Stay? - Medscape - Mar 30, 2015.