HDR UK blog: Mobilising "people powered genomics": rising to the challenge

Natalie Fitzpatrick is the IHI Patient and Public Involvement Lead and is the CALIBER Project Manager. She recently contributed to the HDR UK blog series with a piece on the shift in and the importance of patient involvement with genomic treatments. 

"In our review published last year we highlighted key dilemmas that need to be addressed by the clinical and health informatics community. Whilst elaborate data security and ambitious ethical frameworks exist, there remains a lack of understanding and knowledge for patients which undermines the ethical basis under which such frameworks operate.  Without real transparency or understanding, trust is harder to earn, and despite a recognition of the importance of consent and confidentiality, consent cannot be the cornerstone of trust if people do not understand what they are consenting to and cannot meaningfully assert control over what they choose to share.

All this is a lot to assimilate in our day jobs as researchers.  The ‘AboutMe’ initiative, led by researchers and clinicians at University College London and University College London Hospital (UCLH), and funded by the NIHR UCLH Biomedical Research Centre, aims to embed research into routine medical care by linking patients’ DNA results to their EHR.  The vision is to ensure every piece of information collected from patients as part of their standard care in hospital can be used to improve quality of care and safety for patients through research, with a particular focus on supporting development of new treatments, helping us target treatments more precisely, and where appropriate return relevant genetic information back to patients.  Our vision acknowledges the increasing democratisation of healthcare, and the role of building public trust through transparency to improve the quality and impact of our research is at its core."

To read the full blog visit the HDR UK webpage.