Empowering patients via clinical genome sequencing

1 September 2014

Patients Know Best (PKB), a UK social enterprise that allows patients to coordinate access to their medical records across health professionals, has announced plans to incorporate genomic medicine.

PKB integrates with the health information systems to offer secure tools for sharing of medical records and data sharing controlled by patients. It was founded with the needs of patients with complex and rare health conditions in mind; such patients typically need coordination between a range of different medical specialties, and may frequently encounter clinicians who are unfamiliar with their condition or circumstances.

Last year, PKB partnered with the US-based Rare Genomics Institute to allow upload of exome and genome sequences to patient records. They have now announced a new partnership with Tute Genomics, a company that provides genome analysis software to produce an easily interpretable genomic profile that clinicians can understand.

Dr Mohammad Al-Ubaydli, PKB Chief Executive said: “When doctors know an individual’s genomic profile they can design plans that exactly treat their condition. For example, gene tests can predict whether or not a patient with breast cancer will benefit from a certain type of chemotherapy, or a patient with an infection can safely receive powerful antibiotics. We believe that before long, everyone will get his or her genome sequenced. Tute is providing the most powerful genetic analysis in the hands of patients”.

As Genomics England pushes forward with plans (and new funding) to sequence 100,000 genomes and embed genomic medicine throughout the NHS, they may look to early stage partnerships such as the one between PKB and Tute Genomics as models for clinical implementation – with or without the innovative model of patient involvement and control in what Tute refers to ‘individualized, genome-guided medicine’.

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