Supporting patients in the digital era
Nothing beats face-to-face contact with people who can support you with your disease or illness. But online patient communities can come close, says Kyle Jacques Rose.
As someone who has spent the past 20 years supporting other people with diabetes, Kyle knows a bit about this. The patient advocate, former professional athlete and medtech entrepreneur has Type 1 diabetes himself so he’s keenly aware of the challenges patients face on a daily basis.
When he was diagnosed at age 16, online patient communities didn’t exist. Living in a rural area of the US, Kyle and his parents felt quite isolated until they began to connect with others affected by the disease via patient organisations. “All of a sudden this thing you’ve been living with seems more normal and you’re meeting people with similar frustrations and challenges,” he tells This Is Medtech.
“I met a young adult with T1D after my diagnosis. He was thriving in all aspects of his life. This day is permanently etched into my memory. I realised that I’d still be able to do everything I’d done before, like sports,” he recalls.
Now that we find ourselves in the digital age, has this kind of face-to-face support become obsolete?
“I’m a big believer in the impact of the diabetes online community (DOC),” says Kyle. “It’s very engaged and members of the DOC are available for each other in real time. A great example here in France is Andrea Limbourg.” He stresses that in-person contact will never be replaced, but the internet has become a valuable channel for emulated in-person support. “Even healthcare professionals are beginning to send patients to these communities. This really shows how much this can benefit people.”
A perfect example of peer-to-peer support in the digital era is a free mobile health app that allows diabetes patients to help each other in times of need. “It’s very much designed around the idea of community,” explains Kyle. Members can see who else in their network is in the same geographic area and may be willing to offer important logistical and, sometimes, urgent support.
The idea stemmed from the parents of a child with diabetes. They were at a sports event and they urgently needed test strips to see if the son’s blood sugar had fallen to dangerously low levels (hypoglycaemia), but they’d run out. They were able to tap into their online diabetes forum and find out that someone from the forum was there and able to help. “This is a great example of social interaction within the medical digital world,” says Kyle.
He notes, however, that not everybody is comfortable sharing their ups and downs. “I think it really depends on the culture,” Kyle points out. “It varies from country to country.”
Praising the unsung heroes
Kyle is also eager to praise the unsung heroes ‒ diabetes educators ‒ and their future role in the digital era. These healthcare professionals see patients regularly, educate them and help them with self-management of their disease. They’ve become involved with patients via diabetes coaching apps, including one that Kyle has helped to develop.
“As new diabetes therapies emerge, including artificial pancreas systems which may automate certain aspects of self-management, the role of the educator will not go away but rather adapt accordingly,” he says. “We need them and owe a lot to them.”
Interested in this topic? Kyle will be talking about addressing the needs of the patient community in the digital era at the 2016 MedTech Forum in Brussels on 2 December. Click here to check the programme and register.