Bringing together patients' perspectives on eHealth and mHealth
Patient groups are uniquely placed from lived experience to guide on how to have the toughest of conversations. The UK patient group charity, the Brainstrust, offers a wide range of support via its website, including sharing their experience on dealing with the challenges of living …
The patient advocacy battle for improved health equity has lasted for generations. Arguably, the diverse impact of Covid both globally between countries, and within specific communities, has intensified focus on the scale of health inequity. Two major patient communities in the US, representing Diabetes and …
Throughout their history patient groups have had a proud tradition of supporting each other. Whether reaching across countries or therapy areas, groups have networked, united, and shared ideas and advice. 1: Getting started Setting up a new patient group can feel like a daunting leap …
Online masterclasses One positive of the Covid pandemic is the willingness of people with the right technology to engage in lively panel discussions. However, as the months pass, these are often so free range that afterwards learnings are hard to digest. By contrast, when Myeloma …
One of the learnings from the current pandemic is how rapidly and easily people with all ranges of technical ability and experience have embraced online video meetings. Once expensive and limited to big corporates, during the crisis it’s connected new users to bring families together, …
Thalassaemia It’s not often we see a website from a not-for-profit organisation supporting patients that is so ambitious that we wonder how on earth they do it all. The answer would appear to be skill in attracting grants and funding from government programmes and industry …
Accessible Health It’s been quite a week for banging my head against the wall with the challenges of a healthcare system which breaks its own rules and law. Take for example, people with visual health needs. It started with a man with severe sight impairment …
Patient charities and organisations grow and develop You don’t often find books from patient charities and organisations about how they grow and develop. Victoria Jackson co-founded the Guthy-Jackson Charitable Foundation in 2008 when her daughter was first diagnosed with Neuromyelitis Optica (NMO), a rare, life-threatening …
Patient organisations reviewing apps We set up myhealthapps.net in the belief that patient groups know best what their members need most from apps. So, we’ve always been encouraged when patient groups, patient advocacy groups and other not-for-profit patient charities review or recommended apps. Autism apps: …
Sharing Patient Group Experience Through Blogs – aHUS Alliance Working with patient groups for decades, it’s always striking how tough and resilient the individuals at their heart have to be. The challenges and pressures seem to have intensified in that time, and getting noticed in the …