Why data sharing matters

Advances in genomic medicine services in the NHS offer an unprecedented opportunity to determine the genetic basis of thousands of undiagnosed rare diseases and improve care. Fundamental to the delivery of safe and effective diagnostic services is access to high quality genomic and clinical patient data. But NHS clinical genetics / genomics services face considerable challenges to accessing and sharing the necessary data. We have been finding out what those challenges are and identifying priorities for policy development that can enable data to be shared effectively and responsibly for greater patient benefit.

What we are doing?

PHG Foundation has previously carried out work examining the implications of whole exome and genome sequencing on clinical services which identified data sharing as a key priority for these technologies to be deployed effectively for clinical benefit. Building on this work we collaborated with the Association of Clinical Genetics Science (ACGS) to evaluate the challenges to data sharing and to provide recommendations for policy development.

Our position

Sharing genetic and genomic data and associated clinical and phenotypic data is vital to good clinical care and routine NHS genomics service delivery. There is an urgent need for national agreement and strong leadership to address the multifaceted challenges to data sharing, and to optimise sharing for patient benefit.

Timeline

October 2016 
Along with the ACGS collaborated with the Office of the National Data Guardian (NDG) to deliver an evidence session on genomic data sharing for the NDG’s panel 

September 2016 
Consultation response National Data Guardian for Health and Care’s review of data security, consent and opt-outs 

July 2016
Re-surveyed clinical genetic laboratories one year following the joint PHG Foundation and ACGS workshop to understand if / how data sharing practices and impediments to sharing have changed since this meeting

June 2016
Data sharing to support UK clinical genetics and genomics services report was presented at the biennial meeting of the Human Variome Project (HVP) at UNESCO Paris, and also circulated to the 23 member states of the HVP and discussed extensively earlier in the year in their meeting of the International Confederation of Countries Advisory Councils (view minutes here

2015 -16
We carried out a sustained advocacy and engagement plan, discussing and / or presenting our findings at numerous events including: the National Information Board Ethics Advisory Committee of the 100,000 Genomes Project, Human Variome Project biennial meeting, the joint congress of the European Society of Human Genetics and European Meeting on Psychosocial Aspects of Genetics, Curating the Clinical Genome and Association for Clinical Genetic Science annual conference

December 2015
Developed eleven recommendations to improve, optimise and transform data sharing practice for patient benefit, published in our joint report with the ACGS Data sharing to support UK clinical genetics and genomics services  

June 2015 
Jointly hosted a workshop with the ACGS, bringing together experts across disciplines to discuss the most pressing legal, social and technical considerations surrounding sharing genomic data 

May 2015
Surveyed clinical genetic laboratories to gain insight into their current data sharing practices and perceptions of what is holding back wider data sharing

October 2014 
Briefing note Sharing clinical genomic data for better diagnostics

Sobia has experience in data-handling, interpretation, and the management challenges faced in the 'omics era.

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