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
SINE Project Director, Newcastle University
Learning Technology Co-ordinator, Newcastle University
Humanities Computing Project Manager, Glasgow University
Pauline's current work is in rare disease, investigating patient/patient advocates' views on the international integration of biobanks, registries and research systems for rare disease. She is also interested in patient inclusion in research, 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.
Invited presenter: Nuffield Council on Bioethics ‘Children and research’ working party September 2013, London, UK
Invited speaker: Evidence Live13 "Are patients just pound signs?": perspectives of people with failed metal on metal hip implants
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