Bringing together patients' perspectives on eHealth and mHealth
It’s thought to be around 50 years since the first examples of `Medical Manga’ – graphic novels or comics used for medical education in Japan. Today, it’s reassuring to see that Japanese patient groups continue to make these stories available for download. More widely, across …
The pandemic rapidly accelerated the trend for more clinicians to accept telemedicine. Yet research by our parent organisation PatientView confirmed during the autumn that many patient groups worldwide are extremely concerned about people who lack the technology or digital confidence to access healthcare remotely. Looking …
Patient groups globally are not only helping their communities to deal with the pandemic, but striving to ensure that access to treatments and care continues. There’s a dual challenge of not only advocating to re-engage patients with services disrupted by Covid-19, but also taking opportunities …
As each month passes, we get a widening picture of emerging symptoms of `long COVID’. Gradually, long Covid communities are beginning to appear worldwide, particularly informally on social media. However, the clusters of symptoms can be diverse. So established groups are steppi ng up to …
Who can help the helplines? Our sister organisation PatientView, is currently seeking the views of patient groups worldwide on the impact of COVID-19 on how they operate, and how they are adapting to the new environment. Helplines are often a core activity of groups, and …
The cold prevalence data shows that most families are affected in some way by the loss associated with miscarriage. Equally, it seems that most cultures find it hard to talk about. It’s also an issue that the health app industry has sometimes failed to address …
If there’s any silver lining in the COVID-19 cloud, it’s a virtual one. Overnight, the demise of physical events has at the same time enabled patient groups to involve more of their members in key meetings. Moreover, virtual participants are on an equal footing, not …
Tourette’s Mothers Exchange Experience of Coping with COVID-19 The awareness month for Tourette’s Syndrome runs from May 15th – June 15th. Like many other patient groups, the Tourette’s Association of America, has created a range of webinars to support their community during the pandemic. “My tics …
“Nothing works in the present situation – it didn’t before either.” The words from one of the respondents to a recent survey into the impact of Covid-19 by the Swedish patient group, Riksförbundet Attention, representing people with neuropsychiatric disabilities like autism and ADHD. CHALLENGING THE MYTHS Watching …
Having worked for a couple of decades in support for people with child, adolescent and adult ADHD, it’s pretty clearly that it’s not an ideal condition to have when locked down. Fortunately, those who understand the condition best, the patient groups have stepped in with …