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