Music of Life
Research type
Research Study
Full title
Music of Life: films to explain genomics
IRAS ID
251155
Contact name
Anna Middleton
Contact email
Sponsor organisation
Genome Research Ltd.
Duration of Study in the UK
0 years, 11 months, 30 days
Research summary
Summary of Research
Genomic technology is being rolled out across whole healthcare settings; due to projects such as the 100,000 Genomes Project there has been a surge in ‘conversations around genomics’ happening with patients in the NHS. And yet, there has been limited support for health professionals in how to communicate genomic information appropriately.
Explaining, for example, a ‘pathogenic variant’ or ‘variant of uncertain significance’ can be a real challenge. Whilst Clinical Geneticists and Genetic Counsellors are familiar with this, there is no consistency in how they communicate such concepts and there are no specific tools to support non-specialist health professionals in how to do this.
Building on the significant experience we have had over the last 8 years in exploring the evidence-base to guide conversations around genomics, we have created 6 x 90 second films that can be shown on an iPad within a clinical consultation. These films explain: ‘what is a gene’, ‘recessive inheritance’, ‘dominant inheritance’, ‘x-linked inheritance’, ‘what is de novo’, ‘three outcomes from a diagnostic test’.
These films have been co-created with the team of 13 genetic counsellors working at Addenbrooke’s Hospital in Cambridge and are suitable for any health professional to use. Our intent is to trial their use within genetic counselling clinics and seek patient and genetic counsellor feedback. We also aim to show them as part of a separate public survey and gather public attitudes towards their likability and interest.
Summary of Results
The study has been closed, prior to completion of all of the research objectives, due to insurmountable difficulties in the recruitment of participants and also IT issues caused by the ripple effect of the Covid pandemic on NHS services and retention of academic staff. However, despite this, the films we made for this project have received recognition at three international film festivals in the USA and Russia, and thus, despite not being able to complete the research, we have still managed to deliver public impact and reach of the Music of Life films.
Due to the COVID-19 pandemic, face-to-face genetic counselling consultations at the East of England Regional Clinical Genetics Service stopped completely for a period of time. As this project was designed for in-person delivery, we could not recruit into the project as originally planned. We pivoted to recruitment via Guy’s and St Thomas’ Genomics Medicine service and submitted an amendment to the REC and HRA paperwork to cover this. We started recruitment at Guy’s Hospital, but this hospital moved to only online genetic counselling consultations. Thus we could no longer use the iPad App we had designed to show the films and to gather feedback data. We re-programmed the App to be accessed within an online portal for online consultations, but there were IT difficulties with how data was stored by the web services at the Sanger Institute. Just before lockdown our assigned IT programmer moved from the Sanger Institute in Cambridge back to his family in New Zealand and then left employment with us completely. Due to cost-cutting at the Sanger Institute as a consequence of the pandemic, his post was not backfilled, and so we lost the expertise of the person who designed the bespoke App for us and who had been involved in troubleshooting IT issues. Given the combined difficulties with participant recruitment in the NHS and IT difficulties, unfortunately, this project has been subjected to detriments beyond our control, caused by the ripple effect of the pandemic across academia and healthcare. We have made the difficult decision to close the project and accept that, for this project at least, the impact of the pandemic has made it too difficult to continue.
Aside from the difficulties in completing the research element of the project, the films have been publicly available throughout the project's life, and we have disseminated them widely to the international genetic counselling profession as well as to international film festival public audiences in the USA, and also Russia. The films have been successfully distributed into society, where they are publicly available as open-source tools to explain genomics.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
18/NW/0754
Date of REC Opinion
25 Oct 2018
REC opinion
Favourable Opinion