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
Conference talks and posters
  • 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.
     
  • PMartin, 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 20
     
  • 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. 
     
  • 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 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 meeting,  Copenhagen: Viva Head Office. 08-11 May 2023.
     
  • 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, 15th-18th March 2023.
     
  • Hanchard, M. (2023) ‘Models of Data Deposition’ (Chair: Adams, J.) Open Research in Practice panel, OpenFest, Sheffield:University of Sheffield. 14-September-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, 22nd July 2022 (Remote).
     
  • Hilberg, E. and Kleinhout-Vliek, T. (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, 6.-9.7.2022.
     
  • 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.-28.6.2022.
     
  • Hilberg, E. (2022) ‘The next evidence revolution? - The promises of Real World Evidence’, SPIN Network Meeting, Paris, 19.5.2022.
     
  • Hanchard, M. (2022) ‘Social media analysis of the debate around Zolgensma, SPIN Network Meeting, Paris, 19.5.2022.
     
  • 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). ‘The future is bespoke: 3D printing- a game changing technology for  drug manufacturing’, The Statesman - India. 6-Oct-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. 
     
  • Ding, J. (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-Oct-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

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Online content

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Our work

How we understand being ‘human’ differs between disciplines and has changed radically over time. We are living in an age marked by rapid growth in knowledge about the human body and brain, and new technologies with the potential to change them.

Research themes