Linking Systems to Strategy - Information Systems Evolution in ProCare

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Health Informatics New Zealand

Paul Roseman ProCare Health Limited

Health & Medicine Business

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This presentation was delivered at the QualityWatch seminar: 'Allied health professionals: can we measure quality of care?' on 12 November 2014. Allied health professionals (AHPs) are a group of 12 distinct professions that form a critical part of health care. By 2013 AHPs had made up around 6% of the NHS workforce and accounted for an estimated £2bn of the NHS salary bill. The role that AHPs play in delivering care is likely to increase further into the future as the population ages and people live with more complex needs. Yet despite the size of the workforce and the broad scope of care, there is very little systematic information available to describe the quality of care delivered by AHPs. Find out more in a new report from the Nuffield Trust and the Health Foundation > http://www.qualitywatch.org.uk/AHPs

Dr Martin Bardsley: Integration and information

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There are many factors that impede genomic variant sharing in the UK, despite it becoming a necessary part of clinical care. These include the lack of a designated infrastructure or mechanism aggravated by the complexity of laws that apply, and fragmented and variable advice from local ‘Caldicott guardians’ who guide NHS trusts on their responsibilities concerning data protection and confidentiality. Since the legitimacy of data sharing in the UK is framed in terms of ‘personal data’ being shared for ‘direct care’ (subject to legal exceptions), the blurred boundaries between clinical care and research, and the spectrum of identifiability of data also lead to differing interpretations resulting in inconsistent practices. In a multidisciplinary collaboration, the PHG Foundation and the UK’s Association for Clinical Genetic Science co-hosted a workshop to examine the clinical necessity for sharing variant data and associated phenotypic information, the technical feasibility and the legal and regulatory impediments to such sharing. Delegates included clinicians, laboratory scientists, and key policy makers, including the National Data Guardian for Health and Care and representatives from the 100,000 Genomes Project, a pioneering research project which promises to build a legacy for future genomics services in the UK. The key finding from our work was that current arrangements for sharing genomic variants within the NHS are unsatisfactory and inconsistent practices are compromising safety and quality. Our workshop report [1] highlights the urgent need for (i) national agreement to optimise sharing within the NHS and develop consensus on the legitimacy of data sharing, (ii) standardised operational processes, including a designated sustainable database or mechanism for sharing, and (iii) strong leadership by the multiple relevant health organisations to demonstrate the benefits and risks associated with sharing and not sharing data. Since publication of the workshop report, the NHS Consortium (operating within the DECIPHER database) has reported a 120% increase in the number of cases shared, the 100,000 Genomes Project and associated data embassy have got underway and the EU Data Protection Regulation has been finalised. However research highlights continuing public reservations about some aspects of data sharing including commercial access and misgivings around secondary uses of data. Publication of the National Data Guardian’s long-awaited review of consent and security provisions to provide guidance on a new consent and opt-out model for sharing patient information in the NHS, has been delayed pending the results of the EU referendum being known. Against this backdrop, the imperative to develop robust, proportionate policies for genomic data sharing becomes increasingly acute. Funding from the PHG Foundation and the Association for Clinical Genetic Science.

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