On International Women’s Day, Dr Christine Patch (pictured), Clinical Lead for Genetic Counselling at Genomic England, talks about stepping into the role of Genomics England’s Caldicott Guardian, and pays tribute to the first National Data Guardian, Dame Fiona Caldicott.
The sad news of Dame Fiona Caldicott’s passing last month caused an outpouring of gratitude from around the health and social care sector. Dame Fiona’s vision was that everyone should be able to trust that their personal confidential data is protected and being used appropriately. Her influential work on behalf of the public has built confidence in the health and social care sector. We at Genomics England are deeply influenced by her thinking and take the guardianship of the data assets we are entrusted with very seriously.
In 1997, Dame Fiona delivered a report on patient identifiable information, recommending that ‘a senior person, preferably a health professional, should be nominated in each health organisation to act as a guardian, responsible for safeguarding the confidentiality of patient information.’ Now, eight principles provide the framework for making decisions, which guide organisations like Genomics England.
There have now been thousands of individuals in roles that have her name associated with them, across many different organisations in health and social care. The roles, such as Caldicott Guardian, contribute to decision making about the protection and also, importantly, about the sharing of confidential information. Alongside the other Information Governance roles, they are integral to creating and maintaining trust in organisations that use confidential patient and service user data.
After the development and successful delivery of our 100,000 Genomes Project, Genomics England are now working with the NHS to further develop and embed genomic healthcare and research in the UK, through the Genomic Medicine Service. I have the privilege to take on the role of Caldicott Guardian at an exciting time in Genomics England’s journey.
The Caldicott principle which was most recently added states that there should be ‘no surprises for patients, service users and, in our case, participants, in how their data is used.’ Genomics England has led the way in transparency for our participants. For me, this is essential to maintaining the participants’ trust, and the trust of everyone else who engages with Genomics England.
I very much look forward to working with my colleagues across Genomics England, members of the Genomics England Participant Panel and other stakeholders as Caldicott Guardian to build on strong foundations.
Dr Christine Patch is also Principal Staff Scientist in Genomic Counselling at the Society and Ethics Research Group, Connecting Science at the Wellcome Genome Campus and past President and Board Member of the European Society of Human Genetics.
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