The collaborative project Telling Stories, Understanding Real Life Genetics, which is funded by the Wellcome Trust, has gathered over 90 stories from patients, families and practitioners. The stories play a key role in the teaching and learning of genetics in a healthcare setting and are available to all those learning and teaching genetics.
A key aim of the Centre is to keep the needs of patients at its heart. We welcome the involvement of patients and their families in informing all aspects of our work. In developing our learning support materials, we aim to use first hand accounts of patients to demonstrate the clinical utility of genetics and to tailor them to the needs of the different health care groups.
We carried out a project to explore the experiences and preferences of people receiving genetic information from healthcare professionals. The findings of this project have been published in a report 'The experiences and preferences of people receiving genetic information from healthcare professionals'.
We are now using the information on how and from where people initially receive genetic information and their views on how they would prefer to receive that information to directly inform our education strategies for different healthcare professional groups.
Other activities where patients may wish to help with our genetic education work include:
If you would like to find out more about getting involved in the work of the Centre please contact us at enquries@geneticseducation.nhs.uk.
We have developed a checklist for planning Patient and Public Involvement activities. It contains tips to prompt staff, helping to save time and ensure that value is added by the involvement of patients, service users, carers and the public.
Last updated: 13 October 2011
