Newcastle University

Roles and Responsibilities

Pauline has interests in disability, the ethics of translational research and patient inclusion and empowerment.  She is currently working on two projects:

1. exploring the social and ethical issues around clinical research for rare, childhood disease with TREAT-NMD, an international network which is working to improve diagnosis, care and treatment for neuromuscular disorders throughout the world,
2. a new pilot project exploring patient experiences of failed metal-on-metal hip joints, in conjunction with biomedical engineers and clinical staff.

Her work with TREAT-NMD involves empirical ethics as well as dissemination of ethical and social issues, patient education and science communication:  She has provided a range of resources including:

• a set of short films on aspects of living with neuromuscular disease
• Hope versus Hype - a web guide to stem cell tourism
• a tutorial on the ethics of clincial research with children

She also helps manage the Ethics Council of NMD-Chip, a project to design and develop new, sensitive, high-throughput DNA microarrays for the diagnosis of neuromuscular disorders.

Qualifications

EdD Education, Newcastle University 'Fortress Education: a study of widening participation at an elite UK university'
MSc Computing Science, Newcastle University
BA (Hons) Classical Studies, Newcastle University

Previous Posts

Curriculum Development Officer, Newcastle University
Production Manager, Lily Hill Theatre Company, Galway, Ireland
SINE Project Director, Newcastle University
Learning Technology Co-ordinator, Newcastle University
Humanities Computing Project Manager, Glasgow University

Research Interests

Social and ethical aspects of treatment, care and research in neuromuscular disorders.

Patient experiences of failed metal-on-metal joint replacements.  Website  Twitter

Notions of power, the patient voice, perceptions of quality of life. How policy serves individuals.

Most recently Pauline has also been exploring issues around improvements in medical care which
increasingly result in children with chronic disease living into adulthood. What difference might a holistic, patient-centred approach to care make to key aspects of quality of life such as social participation, independent living, and aspirations for the future?

Other Expertise

Widening participation in UK HE. Non UK students' perceptions and expectations of work-based and experiential learning.

Distance learning particularly online. The strategic implementation of learning technologies. Digitisation particularly in the humanities.

Current Work

An examination of the social and ethical issues associated with the treatment and care of neuromuscular disorders as part of the TREAT-NMD European Network of Excellence.

Future Research

Holistic approaches to medical and social care with chronic, childhood disease and their effect on future aspirations.

Esteem Indicators

Preparation of evidence for UK All Party Parliamentary Group on muscular dystrophy, meeting on neonatal screening, 2011 - London, UK

Invited participant: expert workshop for the development of standards of care in Duchenne muscular dystrophy, 2010 - Naarden, Netherlands

Presenter: European Medicines Agency expert meeting on regulatory approaches to personalised medicine, 2009 - London, UK

Poster presentation: Cell therapies for Duchenne muscular dystrophy: some ethical issues for personalised medicines, European Rare Diseases conference 2009, Krakow, Poland. Received 'special mention' from prize-giving committee. 

Invited Speaker:
CSMA Conference, 2009 - Kharkiv, Ukraine
PPMD CONNECT Conference, 2009 - Atlanta, USA
EAMDA Conference, 2009 - Belgrade, Serbia
Action Duchenne Conference, 2009 - London, UK
Bringing Down the Barriers Conference, 2009 - Brussels, Belgium
European Patients’ Forum, 2009 - Gothenburg, Sweden

Funding

Heritage Lottery Fund £390,000 for SINE Project

Projects

• TREAT-NMD Network
  Project Leader(s): Simon Woods

At the Open University

Masters Education module 'Educational Enquiry' E891

• Woods S, Hagger LE, McCormack P. Therapeutic Misconception: Hope, Trust and Misconception in Paediatric Research. Health Care Analysis 2012, (epub before print).
• McCormack P, Woods S. Disputing the ethics of research: the challenge from bioethics and patient activism to the interpretation of the Declaration of Helsinki in clinical trials. Bioethics 2012, (epub ahead of print).
• McCormack P, Woods S, Hagger L. The therapeutic misconception, decision making and informed consent: the ethics of trial participation for neuromuscular disorders. Neuromuscular Disorders 2011, 22(2), 191-192.
• Aartsma-Rus A, Cosigned by, Furlong P, Vroom E, van Ommen GJ, Niks E, Straathof C, Verschuuren J, Ferlini A, Hagger L, Heslop E, Karcagi V, Kirschner J, McCormack P, Moeschen P, Muntoni F, Ouillade MC, Rahbeck J, Rehmann-Sutter C, Rouault F, Sejersen T, Woods S. The risks of therapeutic misconception and individual patient (n = 1) “trials” in rare diseases such as Duchenne dystrophy. Neuromuscular Disorders 2011, 21(1), 13-15.
• McCormack P. Planning for the future with Duchenne muscular dystrophy – identifying support structures and approaches that can help: a review of the literature. In: TREAT-NMD International. 2011, Geneva, Switzerland.
• McCormack P, Woods S. Ethics at the edge of translation: the work of the TREAT-NMD Project Ethics Council. In: TREAT-NMD International. 2011, Geneva, Switzerland.
• McCormack P, Woods S. Patient activism and the ethics of clinical trials: a perspective from neuromuscular disorders. In: TREAT-NMD International. 2011, Geneva, Switzerland.
• Woods S, McCormack P. Ethical issues in bio-marker research. In: TREAT-NMD International. 2011, Geneva, Switzerland.
• Wienroth M, McCormack P, Joyce TJ. When technology fails patients: nanoparticles as a result of medical device failure. In: S.Net Annual Conference. 2011, Tempe, Arizona, USA.
• Joyce TJ, McCormack P. ‘The knee bone connected to the thigh bone’: A case study of teaching anatomy to engineering students using state-of-the-art anatomical software. In: Haghi, AK; Luppicini, R, ed. Cases on Digital Technologies in Higher Education: Issues and Challenges. Hershey, PA: IGI Global, 2010, pp. 139-149.
• McCormack P. Cell therapies for Duchenne muscular dystrophy: some ethical issues for personalised medicines. In: Journal of Rare Diseases: European Conference on Rare Diseases. 2010, Krakow, Poland: BioMed Central Ltd..
• Muntoni F, Contributors include, Bushby K, Heslop E, McCormack P, Woods S. The development of antisense oligonucleotide therapies for Duchenne muscular dystrophy: Report on a TREAT-NMD workshop hosted by the European Medicines Agency (EMA), on September 25th 2009. Neuromuscular Disorders 2010,20 5 355-362.
• McCormack P, Woods S. Ethical issues with the development of personalised medicines for rare, childhood, genetic disease: the case of Duchenne muscular dystrophy. In: Is Medical Ethics Really in the Best Interests of the Patient?.2010,Uppsala, Sweden
• Woods S, Scully JL, McCormack P, Turkmendag I. Response to report by Nuffield Council on Bioethics, Give and take? Human bodies in medicine and research: consultation summary. London: Nuffield Council on Bioethics, 2010. Available at: http://tinyurl.com/7m3bl7d.