Outputs

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See all our project outputs below, and individual staff pages for team members on the About page. The list is updated regularly.

Articles, books, and chapters
  • Hanchard, M. (2025) ‘Debates over orphan drug pricing: a meta-narrative literature review’, Orphanet Journal of Rare Disease. 20(107). doi: https://doi.org/10.1186/s13023-025-03634-2
  • Hanchard, M. (2024) Review of ‘Navigating the cultures of health care and health insurance: Highly skilled migrants in the US’ By N. Zeldes, London: UCL Press. 2023. Sociology of Health and Illness,. 46(4). pp. 202-216. doi: 10.1111/1467-9566.13773.
  • Baumgartner, R., Arora, P., Bath, C., Burljaev, D., Ciereszko, K., Custers, B., Ding, J., Ernst, W., FoschVillaronga, E., Galanos, V., Gremsl, T., Hendl, T., Kropp, C., Lenk, C., Martin, P., Mbelu, S., Morais Dos Santos Bruss, S., Napiwodzka, K., Nowak, E., Roxanne, T., Samerski, S., Schneeberger, D., Tampe-Mai, K., Vlantoni, K., Wiggert, K. & Williams, R. (2023), 'Fair and equitable AI in biomedical research and healthcare: Social science perspectives', Artificial Intelligence in Medicine, 144(102658), pp. 1-9. doi: 10.1016/j.artmed.2023.102658.
  • Martin, P. (2022) ‘The challenge of institutionalised complicity: Researching the pharmaceutical industry in the era of impact and engagement’, Sociology of Health & Illness, 44(S1), pp. 158-178. doi: 10.1111/1467-9566.13536.
  • Hanchard, M. (2022) ‘Issue-networks as omitted publics in the construction of #rarediseaseday discourse’, Wellcome Open Research, 7(276), doi: https://wellcomeopenresearch.org/articles/7-276.
  • Hanchard, M. (2021) ‘The construction of rare disease discourse on YouTube: highlighting a disparity between policy rhetoric and patient practices around public engagement’, Wellcome Open Research, 6(361), doi: 10.12688/wellcomeopenres.17324.1.
Conference talks and posters
  • Ding, J. & Martin, P. (2025, April) ‘From Blockbuster to Niche-buster - Changing markets and industrial strategies in the pharmaceutical industry’ SPRU freeman seminar, University of Sussex.
  • Ding, J. ‘The growing gap in orphan drug approvals between the US Food and Drug Administration and European Medicines Agency: retrospective cohort study 2011-2020’ [Poster] RE(ACT) Congress & IRDiRC Conference 2025, Brussels, March 2025.
  • Martin, P. (2024) keynote talk: Orphanisation and ‘premium pharma’ Viva: Copenhagen, 09 June 2024.
  • Ding, J. (2024) ‘Access to orphan drugs in the US and Europe: sociotechnical regimes and the shaping of pharmaceutical markets’, 2024 Global Rare Diseases Research Symposium & The Second China Rare Diseases Research and Translational Medicine Annual Conference, Shanghai, China. 23-25 May 2024.
  • Ding, J. (2024) ‘The orphan drug approvals from 2011 to 2020: A comparative Analysis of the US and the EU’ 12th European Conference on Rare Diseases & Orphan Products, Paris, May 2024.
  • Ding, J. (2024) ‘Medication accessibility for rare diseases in the UK: Insights from Patients’ 12th European Conference on Rare Diseases & Orphan Products, Paris, May 2024.
  • Ding, J. (2024) ‘Voice from Patients: along the journey to access’ 12th European Conference on Rare Diseases & Orphan Products, Paris, May 2024.
  • Martin, P., Ding, J. ‘Why is the pharmaceutical industry investing in targeted therapies & precision medicine?’(2024, May) Dublin (chair: Geiger, S.).
  • Ding, J. (2024) ‘The growing divergence in orphan approvals: A retrospective cohort study comparing the FDA and the EMA from 2011 to 2020’, (Cahor: Natz, A.) [Pricing and Reimbursement Track]. World Orphan Drug Congress, Boston, MA. 22-25-Apr-2024.
  • Hanchard, M. (2024) ‘Facebook in diagnosis? Gathering insights from everyday discussion of amyotrophic lateral sclerosis (ALS) treatments.’  (Chair: Wang, M.) [Diagnosis track],  World Orphan Drug Congress, Boston, MA. 22-25-Apr-2024.
  • Hanchard, M. (2024) ‘Alternative pricing structures for orphan medical products’ World Evidence, Pricing, and Access Congress, Amsterdam: RAI Convention Centre. 12-15-Mar-2024.
  • Hilberg, E., Martin, P.,  Stelmach, A., Kleinhout-Vliek, T. (2023) ‘Gene therapy narratives and the making of pharmaceutical futures’ (chair: Pavone, V., Turrini, M., Wahlberg, A., Bourgain, C., and Argudo-Portal, V.) [Panel 51: - Genetic testing: Materiality and temporality: Part 2] 4s annual meeting,  Honolulu: Honolulu convention centre. 08-11 November 2023.
  • Hanchard, M. (2023) ‘High prices, inequitable access, and sociotechnical regimes surrounding orphan drugs: a meta-narrative literature review’ (chair: Cruz, T., Hanssmann, C., and Rollins, O.) [175. Matters of Justice in Science, Technology, and Medicine: Part 2] 4s annual meeting,  Honolulu: Honolulu convention centre. 08-11 November 2023.
  • Ding, J. and Martin, P. (2023) ‘Fixing the broken model: AI, rare disease patient organisations and the repurposing of orphan drugs’ (chair: Bélisle-Pipon, J., Ravitsky, V., and Bensoussan, Y.) [Panel 290. Navigating the Complexities of Trustworthy AI in Healthcare: Ethical, Legal, Technical, Epistemic, and Societal Aspects: Part 1] 4s annual meeting,  Honolulu: Honolulu convention centre. 08-11 November 2023.
  • Ding, J. and Martin, P. (2023) ‘Access to orphan medical products in the US and Europe: sociotechnical regimes and the shaping of pharmaceutical markets’ (chair: Jaimes, A.) [394. STS and policy making (Health) I] 4s annual meeting,  Honolulu: Honolulu convention centre. 08-11 November 2023.
  • Martin, P. (2023) ‘Lightening talk’, STSMN relaunch event. York: York Medical Society, 07-08 September 2023.
  • Hanchard, M. (2023) ‘Lightening talk’, STSMN relaunch event. York: York Medical Society, 07-08 September 2023.
  • Martin, P. (2023) ‘Access to orphan drugs in the US and Europe: sociotechnical regimes and the shaping of drug markets’,  (chair: Wadman, S.) [Panel: Pharmacological developments and treatment infrastructures:] 6th Nordic STS conference, Oslo: TIK – Centre for technology, Innovation, and Culture. 07-09 June 2023.
  • Hanchard, M. (2023) ‘The eversion of state-citizen relations and its impact on patient hope: How ALS treatments are framed on Facebook.’ (chair: Högberg, C. and White, J.) [Panel: Caring and repairing data lives] 6th Nordic STS conference,  Oslo: TIK – Centre for technology, Innovation, and Culture. 07-09 June 2023.
  • Ding, J. (2023) ‘Fixing the broken model: AI, rare disease patient organisations and the repurposing of orphan drugs’, Insigneo Showcase 2023, Sheffield July, 2023.
  • Hilberg, E., (2023) ‘The next data revolution? - The promises of Real World Evidence’ (chair: Wadmann, S.) VIVE meeting, Copenhagen: Vive Head Office. 08-11 May 2023.
  • Hanchard, M. (2023) ‘Paper in progress: Media framing of ALS treatments on Facebook and its relation to patient engagement’ (chair: Wadmann, S.) VIVA meeting, Copenhagen: Viva Head Office. 08-11 May 2023.
  • Ding. J. (2023) ‘The growing gap in orphan drug approvals between the FDA and EMA: A retrospective cohort study 2011-2020’(chair: Wadmann, S.) VIVA meeting, Copenhagen: Viva Head Office. 08-11 May 2023.
  • Borie, M., Bruschi, L., Chen, A., Dell'Orto, D., Hanchard, M., Pearce, W., Pilipets, E., Quets, A., Xu, Z. (2022). ‘According to Google Images: Visual epistemologies of climate change and biodiversity loss’. (Poster). ORDA: The University of Sheffield. doi: 10.15131/shef.data.20394018.v1.
  • Hilberg, E. (2023) ‘The next data revolution? - The promises of Real World Evidence’ (Chair: Hilberg, E.) Panel Economies of Hope/ Economies of Despair, International Studies Association (ISA) Annual Convention, Montréal, Canada, 15-18 March 2023.
  • Hilberg, E., Kleinhout-Vliek, T. and van de Bovenkamp, H. (2022) ‘The social lives of stories: The role(s) of accounts of rare disease from innovation to authorisation and marketing of orphan drugs.’, (Chair: T. Kleinhout-Vliek, C. Douglas and E. Hilberg) EASST Congress, Madrid, 06-209 July 2022.
  • Hilberg, E. (2022) ‘Diagnosing a Differend – Strategic silences and omissions in reforms of orphan drug legislation’, Oxford Global Health and Bioethics International Conference 2022, Oxford 27-28 June 2022.
  • Hilberg, E. (2022) The next data revolution? - The promises of Real World Evidence, (Chair: Ros Williams & Paul Martin) Vital Circulations Symposium 3: Vital Data, 22 July 2022 (Remote).
  • Hilberg, E. (2022) ‘The next evidence revolution? - The promises of Real World Evidence’, SPIN Network Meeting, Paris, 19 May 2022.
  • Hanchard, M. (2022) ‘Social media analysis of the debate around Zolgensma, SPIN Network Meeting, Paris, 19 May 2022.
  • Ding, J. (2022) ‘Orphan Drugs: Industry Dynamics & New Business Strategy’, SPIN Network Meeting, Paris, 19 May 2022.
  • Martin, P. (2022) ‘Orphanisation’, SPIN Network Meeting, Paris, 19 May 2022.
  • Ding, J. (2021) ‘Fixing the broken model: AI, rare disease patient organisations and the repurposing of orphan drugs’, in Fair Medicine and Artificial Intelligence: Chances, Challenges, Consequences. 03-05-Mar-2021.
  • Ding, J. (2021) ‘Why do we need 3D printed pharmaceuticals’, Pop-up University, Sheffield; University of Sheffield. 18,19-September-2021.
  • Ding, J. (2021). ‘Comparing the landscape of orphan drug developments in the US and the EU’, in Weiner, K.. (Chair) Science Technology and Medicine in Society (STEMiS) new staff seminar. Sheffield: University of Sheffield. 01-Dec-2021.
  • Ding, J. (2021) ‘Pharmaprojects Demonstration’, Health Division OECD. 8-June-2021.
  • Ding, J. (2021).The Evolution and Dynamics of Orphan Drug Innovation in the US, in Kleinhout-Vliek,T.,(Chair) 4S Annual Meeting: Transforming the Development & Governance of Pharmaceuticals II. Toronto: Virtual. 08-Oct-2021.
  • Hanchard, M. (2021)  ‘My journey from photography to pharmaceutical policy via maps, films, and benches’, in Weiner, K. (Chair) Science Technology and Medicine in Society (STEMiS) new staff seminar. Sheffield: University of Sheffield. 01-Dec-2021.
  • Hanchard, M. (2021) 'Mapping a controversy: Identifying issue publics through discourse and social network analyses of #rarediseaseday', in: Kleinhout-Vliek,T. (Chair) 4S Annual Meeting: Transforming the Development & Governance of Pharmaceuticals III. Toronto: Virtual. 08-October 2021.
  • Hanchard, M. (2022) ‘TBC’, Social Network Analysis in Scotland (SNAS) group seminar, Wong, M. (Chair). University of Edinburgh: Edinburgh, 08-Mar-2022.
  • Hilberg, E. (2021). ‘Molecular Sovereignties – Patients, Genomes, And The Enduring Biocoloniality Of Intellectual Property’, in Kleinhout-Vliek,T.,(Chair) 4S Annual Meeting: Transforming the Development & Governance of Pharmaceuticals III. Toronto: Virtual. 08-Oct-2021.
  • Hilberg, E. (2021) ‘Biopolitics at the intersection of health and law’, in Weiner, K.. (Chairs) Science Technology and Medicine in Society (STEMiS) new staff seminar. Sheffield: University of Sheffield. 01-Dec-2021.
Reports and Policy briefs
  • Mestre-Ferrandiz, J., Shaw, B., Chatterjee, C., Ding, J., Singh, P. and Hopkins, M. (2022). Policy instruments (non price) for medical innovation. ‘Oslo Medicines Initiative’ (technical report). Copenhagen: WHO Regional Office for Europe. Available at: https://www.who.int/europe/publications/i/item/9789289058223 
Online content

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