Call to Action And Covid Recovery

Call to Action And Covid Recovery

Patient groups globally are not only helping their communities to deal with the pandemic, but striving to ensure that access to treatments and care continues. There’s a dual challenge of not only advocating to re-engage patients with services disrupted by Covid-19, but also taking opportunities…

Patient Groups Prepare For Patients With Long Covid

Patient Groups Prepare For Patients With Long Covid

As each month passes, we get a widening picture of emerging symptoms of `long COVID’. Gradually, long Covid communities are beginning to appear worldwide, particularly informally on social media. However, the clusters of symptoms can be diverse. So established groups are steppi ng up to…

Swedish Volunteers Bridge Language Gap During COVID

Swedish Volunteers Bridge Language Gap During COVID

Most health services struggle to translate medical materials for communities who may not be fluent in the country’s main language. By contrast, Sweden has a long-established tradition of support for patients who are not fluent in Swedish. During the pandemic, this is being underpinned by…

Rare Disease Patient Group Streams Play To Fundraise

Rare Disease Patient Group Streams Play To Fundraise

Patient groups worldwide continue to be badly hit financially as most of their usual fundraising methods stopped during the pandemic. One UK group organised the streaming of a recorded play about their condition to attract donations for views. Getting Better Slowly Guillain-Barre and Associated Inflammatory…

Not For Profit Launches Charter For Digital Health Literacy

Not For Profit Launches Charter For Digital Health Literacy

For more than 20 years, the UK not for profit, the Patient Information Forum (PIF) and its member patient groups have fought to improve patient health literacy. In its recent survey it confirmed the scale of the challenge in building capacity, capability and confidence in…

Myeloma – Virtual better than reality!

Myeloma – Virtual better than reality!

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…

Motor Neurone Disease Association Web Apps

Motor Neurone Disease Association Web Apps

Patient Group Embraces Web App Development As software continues to improve, web apps are one option for groups to create apps quickly and cheaply. For example, in the UK, as part of its app offering, the Motor Neurone Disease Association (MNDA) has created two web…

Connecting for Clinical Trials

Connecting for Clinical Trials

Australian clinical trials app  Whenever we carry out research with patient groups, involvement in clinical trials is often near the top of each wishlist. At the same time, the industry is embracing technology to recruit and retain for clinical trials. ClinTrial Refer app Since its…

Versus Arthritis – Presenting The App

Versus Arthritis – Presenting The App

Patient Group’s Masterclass in Presenting an App Patient groups often lack the time and resources to present their apps well. Commercial developers also tend to neglect this key step, and the format limitations of app stores make it hard to differentiate apps.   So, it’s been…

How Well Are Teenagers Using Digital Health Tools?

How Well Are Teenagers Using Digital Health Tools?

Digital Health Generation The recent “Digital Health Generation” report raised concerns about how young people in the UK use apps and other digital technologies to manage their health.  Reaching teenagers On the plus side, the survey with more than 1000 English 11-18 year olds and…