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 experiences of genome sequencing and big data, as well as patient participation 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
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. She is currently exploring the views of people affected by rare disease, on whole genome sequencing and the international integration of sequencing data, biobanks, registries and bioinformatics for rare diseases. 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.
Pauline's publications are available at 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.
Co-lead (with Simon Woods) Genomics England Patient Involvement implementation group 2015-
Invited expert: Nuffield Council on Bioethics ‘Neurotechnologies and registries’ workshop 2013, London, UK
Invited presenter: Nuffield Council on Bioethics ‘Children and research’ working party 2013, London, UK
Invited speaker: Evidence Live13 "Are patients just pound signs?": perspectives of people with failed metal on metal hip implants, Oxford, UK
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
2015 Faculty Small Bids & SAgE £8,000
2013 GPS Research Fund & MSE £4,000
2011 Faculty Research Fund £3,800; EPSRC Impact Fund £36,000 (PI T J Joyce)
2010 GPS Technical Training £500
2004 PI on SINE Project, £390,000 from Heritage Lottery Fund
Current teaching includes lectures on:
Sociology module Investigating the Body
MRes Neuromuscular Disorders
Bioethics for Bioengineering - Newcastle University
Lecturer on MA Educational Enquiry - Open University
Module Leader Student Tutoring Masters level - Newcastle University
I have 20 years of experience teaching in education; historical/humanities computing; learning technologies and of supervising Masters' dissertations.