Bringing together patients' perspectives on eHealth and mHealth

mhealth

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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 […]

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 […]

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 […]

Challenging Methodologies in Weight Loss App Trials

Challenging Methodologies in Weight Loss App Trials

Methodologies in App Development The same challenge applies to applying typical clinical trial methodologies to app development. The few trials tend to be historical. By the time the trial reports, the app may have been changed many times or been retired. For years we’ve almost […]

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 […]

Continued Data Breaches in Healthcare

Continued Data Breaches in Healthcare

Around two years ago, I happened to be waiting in an out-patient department during a ransomware attack on the UK NHS. In this case, the UK’s over-dependence on paper-based patient records paid off. Even so, staff being locked out of all systems, including appointments, caused […]