Recent Posts

Breast cancer group invests in `voiced’ leaflets

Breast cancer group invests in `voiced’ leaflets

Although screen readers and automated voice technologies continue to improve, there is no substitute for being `read’ to by a warm, human voice. Reading and recording a leaflet out loud is very time-consuming, but can add a personal touch that the flat tones of automation…

Campaigning against health inequity

Campaigning against health inequity

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…

Brain Tumor App – Embedding Video In App Stores

Brain Tumor App – Embedding Video In App Stores

Standing out with video at the app stores Even fully commercial developers with big budgets struggle to make their health apps stand out from many thousands on the app stores. The UK patient organisation, the Brain Tumour Charity, stands ahead of the crowd in three…

Patient Groups Managing Funding Transparently

Patient Groups Managing Funding Transparently

Patient groups have diverse and strongly held views about whether to seek or receive funding from commercial organisations, particularly pharmaceutical companies. However, there is general acceptance that whenever a group needs does receive funding, it needs to be transparent about it. Beyond the legal need…

Eating Disorders Patient Groups Helping Each Other

Eating Disorders Patient Groups Helping Each Other

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…

Digital Tool Identifies Cancer Patient Needs

Digital Tool Identifies Cancer Patient Needs

The UK charity, Macmillan Cancer Support has a long history of innovation in cancer care. In recent years some UK cancer patients have `Holistic Needs Assessments’ at key points in their journey, such as diagnosis or change of treatment. Typically, these are structured, face to…

MPN Group Organises Its Patient Stories

MPN Group Organises Its Patient Stories

Having too much content is a generally a nice problem for a patient group website to have, but it’s still a challenge. The gradual accumulation of compelling content generated by patients can soon fill up any section on a site – blogs, videos, news items,…

The UK’s NHS Latest App Assessment Framework

The UK’s NHS Latest App Assessment Framework

Why should patient groups, anywhere, care about the UK’s latest app assessment framework? Although the UK NHS has historically had some challenges in assessing and reviewing apps, the latest app assessment framework to emerge is worth a look.  Why does evaluation matter to patient groups…

Medical Manga – Japanese Patient Group

Medical Manga – Japanese Patient Group

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…

Digital Buddies in Covid

Digital Buddies in Covid

The concept of digital buddies – volunteers who help people to use their laptops and smartphones to stay connected – has become more urgent during the pandemic. Vulnerable, elderly or shielding people have become more reliant on technology than ever before.  At the same time,…