Newcastle University

Roles and Responsibilities

Pauline has a background in education, social policy and participatory methods.  Her research encompasses disability, patient participation and bioethics with particular interests in notions of power, the patient voice, perceptions of quality of life and how policy serves individuals.

She is currently researching patient inclusion strategies for RD-CONNECT, which aims to provide an integrated platform connecting databases, registries, biobanks and clinical bioinformatics for international rare disease research.  Twitter @paulinemacco

She is also working on 'When technology fails patients', exploring the experiences of patients with failed metal-on-metal hip replacements and their thoughts about current medical device regulation and legislation.  Twitter @metalhip_ncl

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
SINE Project Director, Newcastle University
Learning Technology Co-ordinator, Newcastle University
Humanities Computing Project Manager, Glasgow University

Research Interests

Pauline has interests in disability, the ethics of translational research and patient inclusion and empowerment.  She is currently working on patient participation strategies for the European integration of biobanks for rare disease, as well as policy analysis and patient experience with health technology failure.

She is also involved in managing the Ethics Councils of TREAT-NMD and  NMD-Chip. 

Previous work included empirical ethics, patient education and science communication for neuromuscular disorders.

A wide selection of Pauline's publications is available for download from Newcastle University's e-prints service

Resources

The ethics of clinical research with children - tutorial
Hope versus Hype - a guide to stem cell tourism
Living with neuromuscular disorders - short films
 

Other Expertise

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

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.

Esteem Indicators

Speaker: expert workshop for newborn screening in Duchenne muscular dystrophy, 2012 - Naarden, Netherlands

Submission of evidence to UK Science and Technology Select Committee Inquiry on Medical Device Regulation, 2012 - London, UK

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 prize: 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

PI on SINE Project, £390,000 from Heritage Lottery Fund

Projects

• RD Connect
  Project Leader(s): Hanns Lochmüller and Kate Bushby
• TREAT-NMD Network
  Project Leader(s): Kate Bushby and Volker Straub
• When technology fails patients: engaging with stakeholders on metal-on-metal hip joint failures
  Project Leader(s): Dr Thomas Joyce

• McCormack P, Woods S, Aartsma-Rus A, Hagger L, Herczegfalvi A, Heslop E, Irwin J, Kirschner J, Moeschen P, Muntoni F, Ouillade M-C, Rahbek J, Rehmann-Sutter C, Rouault F, Sejersen T, Vroom E, Straub V, Bushby K, Ferlini A. Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: "translating" the translational. 2013. Available at: http://dx.doi.org/10.1371/currents.md.f90b49429fa814bd26c5b22b13d773ec.
• Woods S, Hagger LE, McCormack P. Therapeutic Misconception: Hope, Trust and Misconception in Paediatric Research. Health Care Analysis 2013, (epub ahead of 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 2013, (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: TREAT-NMD.
• 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: TREAT-NMD.
• 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: TREAT-NMD.
• 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.