Yr Athro Marion McAllister

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The Genetic Counselling Outcome Scale (GCOS-24), the novel Patient Reported Outcome Measure that I developed and validated during my MRC Fellowship (2007-10), was used to evaluate performance of seven of the 22 UK NHS Regional Clinical Genetics centres in 2011-13, supported by the London NHS Specialised Commissioning Group. Sandra Tribe, Senior Commissioning Manager, London Specialised Commissioning Group said about the exercise: “The view from the London Specialised Commissioning Group … is that in the past it has been difficult to identify and quantify outcome measures because (clinical) genetics is either part of an overall treatment pathway or it advises patients on how to manage and live with their genetic condition. As such, outcome measures have not been sophisticated enough to measure their outputs. The ability to identify a range of tailored specific outcomes is welcomed and will enable commissioners to procure high quality and cost effective services which benefit patients so they can make more informed choices about their lifestyle.” 

This work demonstrated, for the first time, that NHS clinical genetics services can deliver significant measurable patient benefits, and identified some further work needed to optimise methods for implementation in routine NHS practice. GCOS-24 is currently being translated into Dutch, Danish, Portuguese, Spanish and Japanese. GCOS-24 was used in a larger service evaluation exercise in the NHS All Wales Medical Genetics Service (AWMGS) in 2014-15, and the data has been used by the clinical team to explore usefulness for continuous service quality improvement in AWMGS. This work was supported by seed corn funding from Cardiff Business School. This body of work demonstrates translation of research findings towards clinical applications.

I am also involved with research led by Prof Alison Metcalfe, Kings College London, to develop a novel intervention to support family communication about inherited genetic conditions, funded by NIHR.

Addysgu

Cardiff University MSc in Genetic Counselling:

Since joining Cardiff University in 2011, I have provided leadership to a team of academics, clinicians and administrative staff to successfully deliver the MSc in Genetic Counselling. This includes ensuring that the MSc course meets the (often competing) demands of a wide range of different stakeholders, both internal (course lecturers & tutors, dissertation supervisors, Graduate Studies Office, University Registry) and external (placement providers, Genetic Counsellor Registration Board (GCRB), external examiner, NHS clinical colleagues at the All Wales Medical Genetics Service.

In this role, I prepare and deliver teaching within a number of modules. I set, mark and provide feedback on student assessments. In 2015, I led the MSc team in introducing GradeMark. I am module lead for ‘Introduction to Research Methods in Genetic Counselling’ and 'MSc disseration', and supervise one or two MSc student dissertation projects in each year group. Student feedback has been very positive. I also play a key role in recruitment, selection and induction of MSc students and staff, and I provide mentorship to both MSc students and staff.

I led on achievement of GCRB (Genetic Counsellor Registration Board) accreditation of the MSc in Genetic Counselling in 2011, and renewal of this in 2014. I also led on achievement of EBMG (European Board of Medical Genetics) accreditation of the MSc in Genetic Counselling in 2012.

In 2014, I led on curriculum development for Cardiff University re-validation of the MSc in Genetic Counselling course, which included re-working the curriculum to ensure all modules carry 20 credits, with appropriate assessment load. I also led on implementation of the Cardiff University-wide assessment criteria in 2015.

External teaching contribution:

External to Cardiff University, I am a member of the Scientific Programme Committee for the first ever Health Education England-funded ‘Genomic Practice for Genetic Counsellors’ Wellcome Trust Scientific Course held at Wellcome Trust Genome Campus, Hinxton, UK, first held in July 2015 and repeated regularly. 

In 2015, I was invited by Health Education England and the UK Association for Genetic Nurses & Counsellors (the UK professional body for genetic counsellors) to be a member of a Curriculum Development Group to develop a new curriculum to support training of genetic counsellors in the UK. The curriculum is developed within the Modernising Scientific Careers ‘Scientist Training Programme’ structure, comprising an intercalated 3-year MSc course, and will be released for HEI tender in early 2016.

In March 2011, I was invited to deliver a two-week Visiting Lectureship in South Africa (expenses paid). I visited the Universities of Cape Town, Stellenbosch and Witwatersrand MSc in Genetic Counselling courses and gave a series of lectures and workshops. In addition, I delivered a keynote address at the South African Society of Human Genetics biennial congress.

Topic areas I would like to supervise in:

• Patient empowerment and patient-centred care
• Qualitative research in healthcare
• Patient-reported outcome measures

Bywgraffiad

Education and qualifications:

• 2000: PhD (Social Science), University of Cambridge  
• 1994: MSc (Genetic Counselling), University of Manchester
• 1989: MSc (Industrial Microbiology), University College Dublin
• 1985: BA (Mod) Natural Science: Genetics, Trinity College Dublin

Career Overview:

• 2011: Cardiff University School of Medicine: Senior Lecturer in Genetic Counselling & Course Director, MSc in Genetic Counselling. 
• 2011-2016: Cardiff & Vale University Health Board (0.4WTE) Registered Genetic Counsellor. 
• 2010 – 2011: Wellcome Trust Research Fellow, Medical Genetics Research Group, School of Biomedicine, The University of Manchester, Fixed-term.
• 2007 - 2010: MRC Research Fellow, Medical Genetics Research Group, School of Biomedicine, The University of Manchester, Fixed-term.
• 2007 – 2011: Honorary Registered Genetic Counsellor, Genetic Medicine, Central Manchester University Hospitals NHS Foundation Trust (CMFT).
• 2003 – 2007 (0.5WTE): Research fellow (Genetic Counselling), Nowgen (North West Genetics Knowledge Park). Fixed-term.
• 1999 – 2003 (1.0WTE); 2003 – 2007 (0.5WTE): Macmillan Genetic Counsellor, Central Manchester University Hospitals NHS Foundation Trust. Substantive.
• Apr – Jun 1999: Cancer Genetics Course Co-Ordinator, Central Manchester Healthcare NHS Trust. Fixed term (0.6WTE).
• 1996 – 1999: PhD studentship (Cancer Research UK), University of Cambridge Centre for Family Research, Faculty of Social and Political Sciences.
• Jun – Oct 1996: Genetic Associate. Central Manchester Healthcare NHS Trust. Fixed term contract.
• 1990–1994: Change Management Consultant. Andersen Consulting (now Accenture) London

Anrhydeddau a dyfarniadau

• 2017: Recipient of the National Society of Genetic Counselors (NSGC) International Leader Award. NSGC is the professional body representing genetic counsellors in North America.
• 2011: Visiting Lecturer, South Africa, Universities of Witwasersrand, Cape Town and Stellenbosch MSc in Genetic Counselling courses.
• 2011: National Institute for Social Care & Health Research / Academic Health Science Centre Clinical Research Time Fellowship (Cardiff & Vale University Health Board). Value: ~£68,000
• 2010: Wellcome Trust VIP Bridging Funding awarded by The University of Manchester Faculty of Medical and Human Sciences in internal competition. Value: £9,480
• 2007: MRC Post-Doctoral Special Training Fellowship in Health Services Research. Value: £318,770
• 2007: Health R&D North West Training and Mentoring (TRAM) scheme to support Health Services Research training and mentoring. Value: £4,500
• 2006: UK Resource Centre for Women in SET travel bursary to present at the International Congress of Human Genetics, Brisbane, Australia. Value: £990
• 1984: Irish-American Foundation undergraduate travel award to work in a research laboratory at University of Michigan, USA investigating cell division cycle genes in S cerevisiae. Value: £1,000

Aelodaethau proffesiynol

• 2016: Genetic Counsellor Registration, European Board of Medical Genetics 
• 2005: Genetic Counsellor Registration, UK Genetic Counsellor Registration Board (no. 153)
• Member of Association of Genetic Nurses & Counsellors (http://www.agnc.org.uk/), the UK professional body for genetic counsellors
• Member of National Society for Genetic Counsellors (http://www.nsgc.org/), the US professional body for genetic counsellors
• Member of British Society for Genetic Medicine (http://www.bsgm.org.uk/), an independent body representing UK human genetics professionals

Safleoedd academaidd blaenorol

• 2010 – 2011: Wellcome Trust Research Fellow, Medical Genetics Research Group, School of Biomedicine, The University of Manchester, Fixed-term.
• 2007 - 2010: MRC Research Fellow, Medical Genetics Research Group, School of Biomedicine, The University of Manchester
• 2003 – 2007: Post-doctoral Research fellow (Genetic Counselling), Nowgen (North West Genetics Knowledge Park).

Pwyllgorau ac adolygu

Internal:

• 2017-ongoing: Member of the Admissions Group for the Medical School

External:

• Education Adviser, Genetic Counsellor Registration Board (GCRB). See www.gcrb.org.uk/
• Member of editorial board for Journal of Genetic Counseling (Springer, IF 2014: 2.243)

Meysydd goruchwyliaeth

• Evaluation of genetic counselling interventions
• Patient experiences of genetic counselling and/or genetic testing
• Patient experiences of living with genetic risk

Ymgysylltu

I am a regular contributor to the Wales Gene Park Schools Genetics Roadshow.

In 2011, I was invited external validation panel member for a new MSc Genetic Counselling at Independent Studies of Science & Technology College, Athens, Greece, developed under franchise to University of Hertfordshire. In 2017, I was invited external validation panel member for a new MSc Genetic Counselling at Qatar University.

In 2012, my article for families affected by genetic conditions “Quality assessment in clinical genetics services” was selected for publication in the newsletter of Genetic Alliance UK, an alliance of patient organisations supporting families affected by genetic conditions. In 2012, my invited book chapter “Genetic Counselling” was published in the Ehlers Danlos Support Group (EDS) booklet “The Management of Ehlers-Danlos Syndrome”.