Bringing together patients' perspectives on eHealth and mHealth

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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 […]

Global Genes Celebrating 10 Years

Global Genes Celebrating 10 Years

10 years of rare disease support – Global Genes It would be wrong to let 2018 pass without celebrating 10 years of the US-based not-for-profit, rare disease patient advocacy organisation, Global Genes. Global Genes grew out of an organisation founded in 2008 by Nicole Boice, […]

Gather My Crew – A Developing Tool for Carers

Gather My Crew – A Developing Tool for Carers

Australian charity demonstrates key steps in developing a carer tool – Gather My Crew Gather My Crew is a digital tool that enables patients and carers to set up and manage support networks. Although working as a small charity, the team has pulled together good practice […]

Digital patient registry – Patient Groups Unite

Digital patient registry – Patient Groups Unite

Patient groups unite for digital registries Digital patient registry: Patient registries have always provided an important way for patient groups to demonstrate the scale of need, support research participant recruitment, and improve treatment and overall experience.  Digital technologies are making real-time evaluation of patients’ real-world experience, […]

Patient Groups and Data Protection Practice

Patient Groups and Data Protection Practice

BEST DATA PROTECTION PRACTICE  For many European patient groups and organisations, understanding their obligations under the European Union General Data Protection Regulation can be challenging. Touching all patient group activities from creating apps, to holding individual’s data, to clinical research and registries, the Regulation will […]

Deloitte – Patients Reasons to Share Data

Deloitte – Patients Reasons to Share Data

PATIENT VIEW RESEARCH IDENTIFIES PATIENTS’ REASONS TO SHARE DATA – Deloitte Research by PatientView with 190 patient groups worldwide for Deloitte found that patients would be “willing” or “somewhat willing” to share their personal health data from apps if it is guaranteed that: Firstly, the […]

Pharma apps, lack In trust – PatientView

Pharma apps, lack In trust – PatientView

PATIENT VIEW RESEARCH IDENTIFIES LACK OF TRUST IN PHARMA APPS Research by PatientView with 190 patient groups worldwide for Deloitte found that: Only 32% of patient groups surveyed had ‘some’ or ‘high’ trust in health apps from pharma 76% of patient groups had ‘some’ or […]

Data Protection – Patient Sharing Data Agreement

Data Protection – Patient Sharing Data Agreement

DeepMind, the Royal Free and the ruling Let’s being with The UK Information Commissioner’s Office. They ruled that the patient data sharing agreement between the Royal Free London NHS Foundation Trust and Google DeepMind was non-compliant with data protection law in a number of areas. […]

HIV Testing Support via Patient Groups

HIV Testing Support via Patient Groups

Patient groups support text messaging for HIV testing In a project to promote HIV testing in the workplace, researchers concluded the following: Firstly, text messaging is a well received way to motivate people to take HIV tests and follow-up action Secondly, 95 per cent of […]