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…

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,…

Patient Groups As Trusted Information Sources

Patient Groups As Trusted Information Sources

Since the birth of the internet, it’s been more and more important to sift accurate medical information from hype and misinformation. The ongoing challenge is to find an effective way of kite-marking a site to show that it is safe to use. Generally, there is…

Communicating Complex Science

Communicating Complex Science

Complex Science Patients often turn to local patient groups when first diagnosed. Finding out about, and understanding, the often complex science can be very important in the early stages of each patient’s journey. Patient groups are often seen as not only trusted sources, but also…

Patient Information – Patient Group Provides Leaflet Service

Patient Information – Patient Group Provides Leaflet Service

You open up your medication. You start to read the leaflet. Your eyes glaze over as you squint through folded pages of small, jargon-filled text. Research shows that those who persevere with reading the leaflet can actually become more anxious and less compliant with treatment.…