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Case Study 6: Delivering the Good Governance Framework of the Scottish Health Informatics Programme (SHIP)

Summary of the impact

Research on health information governance conducted by Laurie (2009-2013) resulted in a transformed and streamlined regulatory environment across Scotland through design and implementation of a state-of-the-art good governance framework for the Scottish Health Informatics Programme (SHIP). This interdisciplinary consortium promotes the facilitation of health-related research through data linkage to deliver new health benefits to current and future generations. Laurie's work overcame regulatory hurdles to effective data linkage and put in place a framework that has been widely adopted and endorsed by NHS stakeholders, researchers, data custodians and publics, as well as the Scottish Government in its cross-sectoral data linkage agenda.

Submitting Institution

University of Edinburgh

Unit of Assessment

Law

Summary Impact Type

Health

Research Subject Area(s)

Medical and Health Sciences: Public Health and Health Services
Law and Legal Studies: Law

Psychosocial impacts of Medically Assisted Reproduction

Summary of the impact

Middlesex University's Applied Health Psychology research on Medically Assisted Reproduction (MAR) has impacted in three areas. First, all Parental Order Reporters and accredited Infertility Counsellors in the UK are exposed to the research through standard professional training and practice materials. Secondly, research has informed Human Fertility and Embryology Authority (HFEA) policy on surrogacy and gamete donation. Thirdly, HFEA-commissioned research on elective Single Embryo Transfer (eSET) and stakeholder group membership has contributed to national guidelines, resulting in decreased numbers of embryos transferred in UK clinical practice, dramatically reducing multiple births and associated maternal and infant morbidity and mortality.

Submitting Institution

Middlesex University

Unit of Assessment

Psychology, Psychiatry and Neuroscience

Summary Impact Type

Societal

Research Subject Area(s)

Medical and Health Sciences: Paediatrics and Reproductive Medicine, Public Health and Health Services
Studies In Human Society: Social Work

Informing clinical policy on epilepsy treatment

Summary of the impact

A team at the University of Liverpool has undertaken research that has informed practice and policy worldwide in the management of patients presenting with newly diagnosed epilepsy, which has achieved international impact on health. Seizures are common and 3-5% of the population will be given a diagnosis of epilepsy during their lifetime. Decisions about when to start treatment, and if so with which drug are crucial and can have a significant effect on outcomes for the individual and have significant economic consequences for society. The research includes the undertaking and analysis of data from randomised controlled trials. The data analysis is based on the statistical research initiated by Dr Paula Williamson while in the Department of Mathematical Sciences at the University of Liverpool between 1996 and 2000. The research identified the most appropriate first line treatments for patients with newly diagnosed epilepsy, addressing both clinical and cost effectiveness. This work has underpinned national policy and triggered the most recent update of the NICE (National Institute for Clinical Excellence) epilepsy guidelines in 2012.

Submitting Institution

University of Liverpool

Unit of Assessment

Mathematical Sciences

Summary Impact Type

Health

Research Subject Area(s)

Medical and Health Sciences: Neurosciences, Public Health and Health Services

Shaping the Ethics and Governance of UK Biobank and Genetic Research Practices

Summary of the impact

Widdows has shaped policy-making in areas of genetic ethics and especially biobanking. She has had impact:

  • As a full member of the Ethics and Governance Council (EGC) of UK Biobank (UKB)
  • As a key member of the IP and Access Sub-Group of the EGC
  • As a keynote speaker at the 2013 World Medical Association Conference feeding into the redrafting of the Declaration of Helsinki (the code governing research globally)

In these arenas her work on consent, trust and genetic governance has shaped understandings of genetic ethics, which has created new policy:

  • Nationally in the development of the policies and processes of UKB (especially with regard to understandings of consent and trust)
  • Internationally, as the processes and lessons of UKB are taken up by other biobanks — demonstrated by the interest in UKB as the first of its kind from international consortia (such as the P3G — Public Population Project in Genetics).
  • Internationally, in her impact on the revision of the Declaration of Helsinki in the explicit mention of biobanks in the current draft.

Submitting Institution

University of Birmingham

Unit of Assessment

Philosophy

Summary Impact Type

Political

Research Subject Area(s)

Medical and Health Sciences: Public Health and Health Services
Philosophy and Religious Studies: Applied Ethics

Guiding national policy on the regulation of health ethics

Summary of the impact

Research in Southampton Law School's Health Ethics and Law (HEAL) network has made a significant contribution to improving the way in which ethical issues in health are addressed in the UK and further afield. HEAL members' specialist research has informed several Department of Health policy documents and policy makers, as well as the strategies of organisations governing bioethics. Their recommendations have influenced professional guidelines for clinicians and lawyers, defining and underpinning good practice so as to protect and benefit service users. Increased understanding of ethical issues in health among the wider public has been promoted through high-profile media coverage.

Submitting Institution

University of Southampton

Unit of Assessment

Law

Summary Impact Type

Political

Research Subject Area(s)

Medical and Health Sciences: Public Health and Health Services
Law and Legal Studies: Law
Philosophy and Religious Studies: Applied Ethics

Multi-country risk-mapping leads to more efficient delivery of mass-treatment for the control of river blindness

Summary of the impact

Onchocerciasis (river blindness) is a debilitating disease of major public health importance in the wet tropics. The African Programme for Onchocerciasis Control (APOC) seeks to control or eliminate the disease in 19 countries. Accurate mapping of Loiasis (eye-worm) was a requirement for implementation of APOC's mass-treatment prophylactic medication programme in order to mitigate against serious adverse reactions to the Onchocerciasis medication in areas also highly endemic for Loiasis. Model-based geostatistical methods developed at Lancaster were used to obtain the required maps and contributed to a change in practice of APOC in a major health programme in Africa. Our maps are used to plan the delivery of the mass-treatment programme to rural communities throughout the APOC countries, an estimated total population of 115 million.

Submitting Institution

Lancaster University

Unit of Assessment

Allied Health Professions, Dentistry, Nursing and Pharmacy

Summary Impact Type

Health

Research Subject Area(s)

Mathematical Sciences: Statistics
Medical and Health Sciences: Cardiorespiratory Medicine and Haematology, Public Health and Health Services

2. Platinum-Group Element mineral deposits: exploration, evaluation and beneficiation

Summary of the impact

Platinum Group Elements (PGE) are critical strategic metals because of their unrivalled applications in catalysts, fuel cells and electronics and cancer therapies. Research and analytical methods developed at Cardiff have impacted on exploration for new PGE deposits, and more efficient processing of PGE ores by international mining companies. A key milestone between 2009 and 2012 was the discovery of a 3 billion year old giant impact crater in West Greenland. This discovery is of major economic significance because all craters previously found in this size class are associated with multi-billion dollar mineral and/or hydrocarbon resources. It led to an intellectual property transaction worth CDN$ 2.1 million and discovery of nickel and PGE deposits in Greenland by North American Nickel Incorporated.

Submitting Institution

Cardiff University

Unit of Assessment

Earth Systems and Environmental Sciences

Summary Impact Type

Environmental

Research Subject Area(s)

Earth Sciences: Geochemistry, Geology
Engineering: Resources Engineering and Extractive Metallurgy

Tools for analysing human Y-chromosome diversity: impact of DNA testing on the development of genetic genealogy and male-specific forensic analysis

Summary of the impact

This case study describes the societal and cultural impact of the development of DNA-based tools for distinguishing between different lineages of the human Y chromosome, which is male-determining and passed down from father to son. The availability of highly discriminating DNA markers has had two main impacts: (i) illumination of the link between the Y chromosome and patrilineal surnames, triggering the development of genetic genealogy, the investigation by the public of historical family relationships through DNA testing; and (ii) application of Y-DNA markers in forensic casework, with particular utility in rape cases where male and female DNAs are mixed.

Submitting Institution

University of Leicester

Unit of Assessment

Biological Sciences

Summary Impact Type

Technological

Research Subject Area(s)

Biological Sciences: Genetics
Medical and Health Sciences: Public Health and Health Services

Improving telephone helpline effectiveness using new evidence-based training methods

Summary of the impact

Members of Loughborough University's Helpline Research Unit (LUHRU) have been researching, evaluating and advising on helpline services since 2000. LUHRU research on the exchange of talk between callers and call-takers on telephone helplines has had a significant impact on helpline training and quality control, benefitting helpline organisations, call-takers, and users. The impact has been realised through a) engagement activities that have increased understanding of helpline interactions amongst managers and call-takers, b) training and development activities that have changed call-takers' practices, and c) consultation and evaluations that have changed organisational policy and practice.

Submitting Institution

Loughborough University

Unit of Assessment

Communication, Cultural and Media Studies, Library and Information Management 

Summary Impact Type

Societal

Research Subject Area(s)

Psychology and Cognitive Sciences: Psychology

2. Improving the effectiveness of police communication with the public in South Wales

Summary of the impact

Rock researches the comprehensibility and effect on readers and hearers of police language. She has deployed this research in a long-term collaboration with South Wales Police (SWP) and their associated agencies, such as trainers and interpreters. Rock has used her research findings to offer tailor-made solutions to a range of specific problems that SWP have identified in their communications with the public. So as to build capacity rather than creating long-term dependency, she places strong emphasis on acquainting the in-house staff sufficiently with her research to enable them to understand the potential options available, and to contribute to developing the best outcomes. Her interventions focus on written and spoken communications with the public relating to complaints, victim care, interviewing and interpreting. Outcomes have been major revisions to texts and permanent modifications to individual and organisational practices.

Submitting Institution

Cardiff University

Unit of Assessment

English Language and Literature

Summary Impact Type

Societal

Research Subject Area(s)

Education: Specialist Studies In Education
Psychology and Cognitive Sciences: Psychology, Cognitive Sciences

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