Recent Posts

Mind The Gap – Electronic Health Records Babel

Mind The Gap – Electronic Health Records Babel

Studies demonstrating the challenges of embedding interoperable Electronic Health Records are as inevitable as Christmas. Clearly, we’ve all been on Santa’s naughty list, because after decades joined-up thinking on our health records feels as far off as ever. In fact, we’ve been so naughty that…

UK Crohn’s Group Digital Innovation Stands Out!

UK Crohn’s Group Digital Innovation Stands Out!

From a ‘talking toolkit’ to personalise conversations about Crohn’s disease, to an app simulating app reviews, and a library of recommended apps – the patient group Crohn’s and Colitis UK stands out. Finding what to say The strength of digital is to customise and personalise…

Endometriosis Apps Library

Endometriosis Apps Library

Endometriosis is common, affecting more than 10% of women worldwide – around 180 million people. It’s notoriously difficult and lengthy to diagnose, and incurable, so the clinical focus is on symptom tracking and relief. Apps can play an important role in this, and the non-profit…

What’s In A Name?

What’s In A Name?

Our parent, PatientView, has listings of around 40,000 contacts in patient organisations for diverse therapy areas across the world. The database is a monster, requiring constant checking, updating and additions. What it brings home is that now, more than ever, patient groups and health charities…

Sign Language – Signing My Life Away

Sign Language – Signing My Life Away

I’ve always been in awe of all forms of sign language. At a conference for blind people, I experienced a deaf-blind speaker deftly take questions signed on to his hand, and fluidly respond. A Welsh deaf scientist recently invented logical signs for common elements in…

Umbrella Group For Thalassaemia Innovates

Umbrella Group For Thalassaemia Innovates

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…

Calm Harm – Teenage Mental Health Charity Makes It’s Apps Stand Out

Calm Harm – Teenage Mental Health Charity Makes It’s Apps Stand Out

Calm Harm App It’s highly challenging for small health charities and patient groups to get their apps noticed. Stem4, a UK-based mental health charity for teenagers, has gained large numbers of users for its apps. Looking at the websites supporting its anxiety and self-harm apps,…

Improving Accessible Health Information

Improving Accessible Health Information

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 Groups Address The Impact of Liver Disease

Patient Groups Address The Impact of Liver Disease

World Hepatitis Day 28th July is World Hepatitis Day. In the lead-up to this, UK charity, the British Liver Trust, published its key report “The Alarming Rise of Liver Disease in the UK”. On the other side of the world we also look at how…

World Continence Week

World Continence Week

The World Federation of Incontinence Patients (WFIP) is a federation of national patient organisations. Its aim is to create global visibility for incontinence and pelvic floor dysfunction and remove any associated stigma and taboos. The Federation organises World Continence Week, this year running from 17-23…