A national check of online genomic patient information has been carried out by the seven Regional Genomic Medicine Service Alliances (GMSAs) across England. They worked with the charity Gene People to do this review.
The project began after the NHS North West GMSA Patient and Public Voice (PPVP) Panel were asked to look at information available on their own website.
The PPVP Chair, David McCormick, thought that it would be good to look at other GMSA websites too.
Gene People was chosen to help because they have strong experience in genetic conditions, health communication, and working with patients and families. They created a special checklist with 52 questions to help review each piece of information. This checklist looked at things like how the information was set out, how it was written, how it was designed, and how easy it was to access.
In total, 18 pieces of patient information were reviewed. These covered:
· Whole genome sequencing
· Genomics in cardiology
· Genomics in lung cancer
The review found some good things.
Many pages had a clear layout, a friendly tone, and helpful explanations of difficult medical words. However, the review also found some problems.
Most of the information was written at a level that was too hard for many people to read.
Very few items matched the recommended reading age of 9–11 years. There was also little involvement from patients in helping to create the information.
Many pages did not meet the national Web Content Accessibility Guidelines (WCAG 2.2).
Some important details were also missing, such as:
· Emotional support information
· What happens after a clinic appointment
· Clear dates showing when the information was written or checked
After completing the audit, Gene People created a set of national recommendations. These include:
· Write information so it can be read by 9–11-year-olds and older
· Follow the WCAG rules to make sure information is accessible for everyone
· Add alternative formats, such as easy-read versions or translations
· Include “alt text” for images so people using screen readers understand them
· Involve patients and the public when creating new information
· Add local contact details so people know who to ask for help
· Include emotional support and what happens next
· Train staff so they understand how to write good, clear patient information
The project findings were shared with each GMSA through an executive summary, an infographic, and a video and audio podcast.
The findings were also shared earlier today at the NHS Genomic Health Care Summit in London.
Downloadable assets and more information is available here: https://www.nw-gmsa.nhs.uk/media-news-and-events/latest-news-blogs/aiming-high-kicking-exciting-new-patient-and-public-project-gene-people