The seven Genomic Medicine Service Alliances (GMSA) across England and Gene People, formerly known as Genetic Disorders UK, are teaming up to deliver a patient and public voice driven online information patient audit (OIPA) across England.
The project is now live with the final report anticipated to be ready by end of March 2025. Across three separate healthcare topics, each of the seven Alliances across England will be asked to identify an example of patient and public information in relation to genomics, and genomic medicine for Gene People to then independently review and audit.
In brief, the project aims to:
- Evaluate use of ‘plain English’ within online content related to whole genomic sequencing, genomics in cardiology, and genomics in lung cancer across each GMSA region.
- Identify content that is effective and aligned with best practice.
- Determine gaps in content and areas for improvement.
- Provide a comprehensive set of recommendations to enhance quality and accessibility of healthcare information available to patients online.
The finalised report will include recommendations for enhancing range and content available for patients and public, in relation to the embedding of genomics within routine healthcare, at various touchpoints within patient and care pathways.
David McCormick, Chair of the Patient & Public Voice (PPV) Panel to the NHS North West Genomic Medicine Service Alliance who developed the initial idea, said:“The primary aim of the OIPA is to identify and develop a set of communication principles that NHS organisations can support, refer to and deploy, when developing new or updating existing patient information materials, across a variety of communication channels. Accessibility and readability are core elements, within a consistent approach to sharing vital information to patients and public alike.”
Samantha Barber, Chief Executive of Gene People added:"We are very pleased to be able to support the OIPA project and we look forward to developing the recommendations which will be pivotal in enhancing quality of information and care for patients going forwards.”
Stuart Bayliss, Alliance Director, NHS North West Genomic Medicine Service Alliance said:“This is such a fantastic project, and we are delighted to be working with Gene People to fulfil Dave’s vision to make a difference in the lives of patients, across England.”
About the North West Genomic Medicine Service Alliance
The NHS North West Genomic Medicine Service Alliance (NW GMSA) is one in a network of seven regional alliances launched in England in January 2021 by the NHS Genomic Medicine Service (GMS) to oversee and co-ordinate the embedding of genomics into routine healthcare across England.
In October 2022, NHS England published Accelerating Genomic Medicine in the NHS, the first NHS genomics strategy, which included the establishment of eight ‘NHS Genomic Networks of Excellence’ to develop the evidence and model of adoption for cutting edge genomic advances and technology applications that will be transformative for patients. The networks of excellence sit within the existing network of Alliances, across England. More information is available at www.nw-gmsa.nhs.uk
About Gene People
Gene People, previously known as Genetic Disorders UK, is a registered charity with a vision to improve the lives of individuals and families affected by genetic conditions.
Their mission is to be the leading source of information and support for both those affected by a genetic condition, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.
More information is available at https://genepeople.org.uk/about-us/