Dr Jayne Spink has more than a decade’s experience in the third sector, formerly as CEO of the Tuberous Sclerosis Association and Director of Policy & Research with the Multiple Sclerosis Society. She has a BSc and PhD in Genetics with postdoctoral research experience. After leaving the research bench, Jayne worked for the Department of Health in Clinical Quality, Ethics and Genetics and has served as an Associate Director for the Centre for Clinical Practice at NICE. In April 2017 Jayne joined Genetic Alliance UK, a UK charity and umbrella group comprised of 240 third sector organisations, that in turn variously provide support, information and funding for research. Genetic Alliance UK is home to Rare Diseases UK which campaigns on behalf of all those affected by Rare Conditions, and SWAN UK, providing support to families affected by “syndromes without a name” which are of likely genetic origin. Jayne Spink – The Role of Patients in Resource Allocation Decision Making in Genomic Medicine Our ability to capture and ride the tidal wave of benefits predicted of genomic medicine will depend on our readiness to fundamentally rethink our approach to healthcare resource allocation decision making. A growing number of hitherto untreatable, and frequently lethal, rare diseases are becoming increasingly amenable to treatment. In some instances, such diseases are now essentially curable. This scenario would have been unimaginable only a few years ago. The methodologies of health technology assessment and the decision-making processes relating to resource allocation were not designed in the context of rare diseases and struggle to take into account the value of innovation. We urgently need a coherent approach that is efficient and proportionate, where decision-making is open and transparent, and where the voice of patients and families is supported, valued and demonstrably impactful.

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