Background

Roles and Responsibilities

I am a medical sociologist with a background in education, social policy and participatory methods. I am interested in the relationships between patients and families and medicine as an establishment, including medical research. My research  encompasses: patient experiences of medical technologies, translational research and clinical trials; patient participation; and bioethics, with particular interests in notions of power and the patient voice. Twitter @paulinemacco

I am a proponent of interdisciplinarity and have worked alongside patients, clinicians and bioinformaticians on several rare disease projects such as RD-CONNECT, 100,000 Genomes Project and TREAT-NMD. I worked with patients, engineers and surgeons on 'When technology fails patients', exploring the experiences of patients with failed metal-on-metal hip replacements.

Publications: e-prints service

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

• Senior Research Associate, PEALS, Newcastle University
• Lecturer, Open University
• Curriculum Development Officer, Newcastle University
• Production Manager, Lily Hill Theatre Company, Galway
• Research Associate, Institute of Education, London
• SINE Project Director, Newcastle University
• Learning Technology Co-ordinator, Newcastle University
• Humanities Computing Project Manager, Glasgow University

Google scholar: Click here.

Research

Research Interests

Publications are available at from Newcastle University's e-prints service.

Pauline's research interests are in medical sociology particularly, social and ethical approaches to new technologies, patient activism, and how policy translates to individuals. She often works in the field of rare diseases, investigating patient/patient advocates' experiences of new drug developments and technologies, particularly genomics.

Esteem Indicators

European Commission Expert Reviewer on patient participation 2017-

Co-lead Genomics England Patient Involvement implementation group 2015-2020

Nuffield Council on Bioethics ‘Children and research’ working party 2013, London, UK

Chairperson Rare Disease Patient and Ethics Council 2012-

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

Teaching

Module Leader and lecturer SOC2056 Sociology of Health and Ilness

Lecturer SOC1032 Politics and Sociology

Previous teaching:

MSc Genomic Medicine

MRes Neuromuscular Disorders

Investigating the Body

Bioethics for Bioengineering

Lecturer on MA Educational Enquiry - Open University

Module Leader Student Tutoring Masters level - Newcastle University

Publications

• Articles

  • McCormack P. From embodiment to evidence: The harmful intersection of poor regulation of medical implants and obstructed narratives in embodied experiences of failed metal-on-metal hips. Health 2024, 28(4), 578-595.
  • Pearce C, Goettke E, Hallowell N, McCormack P, Flinter F, McKevitt C. Delivering genomic medicine in the UK National Health Service: a systematic review and narrative synthesis. Genetics in Medicine 2019, 21, 2667-2675.
  • McCormack P, Kole A, Gainotti S, Mascalzoni D, Molster C, Lochmüller H, Woods S. 'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research. European Journal of Human Genetics 2016, 24, 1403-1408.
  • McCormack P, Woods S. New recommendation on biological materials could hamper muscular dystrophy research. PLoS Currents 2016, 8(MuscularDystrophy).
  • Gainotti S, Turner C, Woods S, Kole A, McCormack P, Lochmüller H, Riess O, Straub V, Posada M, Taruscio D, Mascalzoni D. Improving the informed consent process in international collaborative rare disease research: Effective consent for effective research. European Journal of Human Genetics 2016, 1–7.
  • Mascalzoni D, Dove E, Rubinstein Y, Dawkins H, Kole A, McCormack P, Woods S, Riess O, Schaefer F, Lochmüller H, Knoppers B, Hansson M. International Charter of principles for sharing bio-specimens and data. European Journal of Human Genetics 2015, 23(6), 721-728.
  • Woods S, Hagger LE, McCormack P. Therapeutic Misconception: Hope, Trust and Misconception in Paediatric Research. Health Care Analysis 2014, 22(1), 3-21.
  • Wienroth M, McCormack P, Joyce T. Precaution, governance and the failure of medical implants: the ASR^(TM) hip in the UK. Life Sciences, Society and Policy 2014, 10(19), 16.
  • Woods S, McCormack P. 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, 27(5), 243-250.
  • 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.
  • 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.

• Book Chapter

  • 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.

• Conference Proceedings (inc. Abstracts)

  • McCormack P. Rare Disease, Big Data: the views of rare disease patients on systems for sharing data and biospecimens. In: European Conference on Rare Diseases and Orphan Products (ECRD 2016). 2016, Edinburgh: EURORDIS.
  • McCormack P, Kole A, Turner C, Woods S. Consent, collaboration and cures:the views of rare disease patients on systems for sharing data and biospecimens. In: Rare Disease Joint Projects Meeting 2015. 2015.
  • McCormack P, Kole A. Setting up strategies: patient inclusion in biobank and genomics research in Europe. In: 7th European Conference on Rare Diseases and Orphan Products. 2014, Berlin, Germany: BioMed Central Ltd.
  • McCormack P. Rare Disease Patient and Ethics Council (RD-PEC). In: Joint Rare Disease Projects Meeting. 2014.
  • McCormack P, Wienroth M, Hopkins C, Joyce T. A mile in my shoes: the experiences of ASR hip patients and their families. In: 14th EFORT Congress 2013. 2013, Istanbul, Turkey: European Federation of National Associations of Orthopaedics and Traumatology.
  • 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.
  • 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. Patient activism and the ethics of clinical trials: a perspective from neuromuscular disorders. 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: TREAT-NMD.
  • Woods S, McCormack P. Ethical issues in bio-marker research. In: TREAT-NMD International. 2011, Geneva, Switzerland: TREAT-NMD.
  • McCormack P. Cell therapies for Duchenne muscular dystrophy: some ethical issues for personalised medicines. In: 5th European Conference on Rare Diseases (ECRD 2010). 2010, Krakow, Poland: BioMed Central Ltd.
  • McCormack P. Barriers to advancing clinical trials in neuromuscular disorders. In: World Alliance of Neuromuscular Diseases Associations Conference. 2010.
  • 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.

• Note

  • Pearce C, Goettke E, Hallowell N, McCormack P, Flinter F, McKevitt C. Correction: Delivering genomic medicine in the UK National Health Service: a systematic review and narrative synthesis (Genetics in Medicine, (2019), 10.1038/s41436-019-0579-x). Genetics in Medicine 2019, (ePub ahead of Print).

• Online Publications

  • 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, 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://nuffieldbioethics.org/wp-content/uploads/Simon-Woods-Jackie-Leach-Scully-Pauline-McCormack-and-Ilke-Turkmendag-of-the-Policy-Ethics-and-Life-Sciences-Research-Centre.pdf.