Patient Advocacy Group Focuses On Digital Social Inclusion
Any parent of a teenager knows how vital it is to have regular access to social media. Equally, social media have connected scattered patient communities and created a powerful network of support and advocacy.
But what happens when because of a learning or communication need, accessing social media is challenging? Researchers and developers across the world are focused on digital social inclusion as a basic human right.
Advocacy group builds app for social media confidence
A Danish advocacy and support organisation for people with special needs, Ligevaerd (Equality), created a website and app to give young people with special needs the same access to the digital world as other people.
The DigiSafe app helps them to:
- Recognise potential challenges, for example when shopping over the internet or using social media
- Learn how to overcome common challenges
- Learn how to protect their personal information
- Gain confidence and familiarity with digital channels and tools.
The app also includes a `seek help’ option which can connect them with a volunteer for guidance over Skype.
Social media training
People with special learning or communication needs may also benefit from training to build their confidence in getting the most from social media.
To test this, one small study* by the University of Newcastle, Australia focused on three people who rely on non-verbal communication methods to replace or supplement speech – Augmentative and Alternative Communication (AAC).
The participants received tailored support, and two hours of personal training via Skype in using Twitter. Baseline data were gathered over three months before the training to compare with their usage six months after.
Two of the three participants:
- grew the size and diversity of their networks
- used Twitter to express opinions and connect with individuals and organisations.
One of the participants saw the benefit of the training as being heard, saying in their follow-up interview that their Twitter network was:
“…growing in the direction I want – being about disability issues – last week I felt valued when disability organisations liked or retweeted me.” – Participant in the University of Newcastle study
Another participant gave this advice to other people who use Augmentative and Alternative Communication:
“I think every social media platform you should at least try and stick with it for a while. I always say it (Twitter) levels the playing field.” – Participant in the University of Newcastle study.
What more can be done?
Patient support and activity groups are very active in helping support their communities to engage with social media. The same is true of health and social care providers.
What’s less clear is the scale of support from the social media platforms. They are set up to meet technical accessibility standards, for example for those with visual needs. But how much investment is there in outreach or training to build confidence in communities with special learning or communication needs?
Finally, patient advocacy groups are taking on the Trump Administration to protect patients’ data privacy on social media. They responded to media reports in March when the US Social Security Administration proposed to expand how it investigates social media to evaluate applicants for disability benefits.
How free can free speech be in a patient’s social media network, if a post taken out of context leaves those with rights to benefits out of pocket?
Read the review of the DigiSafe app at myhealthapps.net…
Find out more about the Twitter training study [Hemsley, B., Palmer, S., Dann, S., & Balandin, S. (2018). Using Twitter to access the human right of communication for people who use Augmentative and Alternative Communication (AAC). International Journal of Speech Language Pathology, 20(1), 50-58. doi:10.1080/17549507.2017.1413137] at…