Outputs
See all our project outputs below, and individual staff pages for team members on the 爆料TV page. The list is updated regularly.
- Articles, books, and chapters
- Hanchard, M. (2025) 鈥楧ebates over orphan drug pricing: a meta-narrative literature review鈥, Orphanet Journal of Rare Disease. 20(107). doi:
- Hanchard, M. (2024) Review of 鈥楴avigating the cultures of health care and health insurance: Highly skilled migrants in the US鈥 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: .
- Martin, P. (2022) 鈥楾he challenge of institutionalised complicity: Researching the pharmaceutical industry in the era of impact and engagement鈥, Sociology of Health & Illness, 44(S1), pp. 158-178. doi: .
- Hanchard, M. (2022) 鈥業ssue-networks as omitted publics in the construction of #rarediseaseday discourse鈥, Wellcome Open Research, 7(276), doi: .
- Hanchard, M. (2021) 鈥楾he construction of rare disease discourse on YouTube: highlighting a disparity between policy rhetoric and patient practices around public engagement鈥, Wellcome Open Research, 6(361), doi: .
- Conference talks and posters
- Ding, J. & Martin, P. (2025, April) 鈥楩rom Blockbuster to Niche-buster - Changing markets and industrial strategies in the pharmaceutical industry鈥 SPRU freeman seminar, University of Sussex.
- Ding, J. 鈥楾he growing gap in orphan drug approvals between the US Food and Drug Administration and European Medicines Agency: retrospective cohort study 2011-2020鈥 [Poster] RE(ACT) Congress & IRDiRC Conference 2025, Brussels, March 2025.
- Martin, P. (2024) keynote talk: Orphanisation and 鈥榩remium pharma鈥 Viva: Copenhagen, 09 June 2024.
- Ding, J. (2024) 鈥楢ccess to orphan drugs in the US and Europe: sociotechnical regimes and the shaping of pharmaceutical markets鈥, 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) 鈥楾he orphan drug approvals from 2011 to 2020: A comparative Analysis of the US and the EU鈥 12th European Conference on Rare Diseases & Orphan Products, Paris, May 2024.
- Ding, J. (2024) 鈥楳edication accessibility for rare diseases in the UK: Insights from Patients鈥 12th European Conference on Rare Diseases & Orphan Products, Paris, May 2024.
- Ding, J. (2024) 鈥榁oice from Patients: along the journey to access鈥 12th European Conference on Rare Diseases & Orphan Products, Paris, May 2024.
- Martin, P., Ding, J. 鈥榃hy is the pharmaceutical industry investing in targeted therapies & precision medicine?鈥(2024, May) Dublin (chair: Geiger, S.).
- Ding, J. (2024) 鈥楾he growing divergence in orphan approvals: A retrospective cohort study comparing the FDA and the EMA from 2011 to 2020鈥, (Cahor: Natz, A.) [Pricing and Reimbursement Track]. World Orphan Drug Congress, Boston, MA. 22-25-Apr-2024.
- Hanchard, M. (2024) 鈥楩acebook in diagnosis? Gathering insights from everyday discussion of amyotrophic lateral sclerosis (ALS) treatments.鈥 (Chair: Wang, M.) [Diagnosis track], World Orphan Drug Congress, Boston, MA. 22-25-Apr-2024.
- Hanchard, M. (2024) 鈥楢lternative pricing structures for orphan medical products鈥 World Evidence, Pricing, and Access Congress, Amsterdam: RAI Convention Centre. 12-15-Mar-2024.
- Hilberg, E., Martin, P., Stelmach, A., Kleinhout-Vliek, T. (2023) 鈥楪ene therapy narratives and the making of pharmaceutical futures鈥 (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) 鈥楬igh prices, inequitable access, and sociotechnical regimes surrounding orphan drugs: a meta-narrative literature review鈥 (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) 鈥楩ixing the broken model: AI, rare disease patient organisations and the repurposing of orphan drugs鈥 (chair: B茅lisle-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) 鈥楢ccess to orphan medical products in the US and Europe: sociotechnical regimes and the shaping of pharmaceutical markets鈥 (chair: Jaimes, A.) [394. STS and policy making (Health) I] 4s annual meeting, Honolulu: Honolulu convention centre. 08-11 November 2023.
- Martin, P. (2023) 鈥楲ightening talk鈥, STSMN relaunch event. York: York Medical Society, 07-08 September 2023.
- Hanchard, M. (2023) 鈥楲ightening talk鈥, STSMN relaunch event. York: York Medical Society, 07-08 September 2023.
- Martin, P. (2023) 鈥楢ccess to orphan drugs in the US and Europe: sociotechnical regimes and the shaping of drug markets鈥, (chair: Wadman, S.) [Panel: Pharmacological developments and treatment infrastructures:] 6th Nordic STS conference, Oslo: TIK 鈥 Centre for technology, Innovation, and Culture. 07-09 June 2023.
- Hanchard, M. (2023) 鈥楾he eversion of state-citizen relations and its impact on patient hope: How ALS treatments are framed on Facebook.鈥 (chair: H枚gberg, C. and White, J.) [Panel: Caring and repairing data lives] 6th Nordic STS conference, Oslo: TIK 鈥 Centre for technology, Innovation, and Culture. 07-09 June 2023.
- Ding, J. (2023) 鈥楩ixing the broken model: AI, rare disease patient organisations and the repurposing of orphan drugs鈥, Insigneo Showcase 2023, Sheffield July, 2023.
- Hilberg, E., (2023) 鈥楾he next data revolution? - The promises of Real World Evidence鈥 (chair: Wadmann, S.) VIVE meeting, Copenhagen: Vive Head Office. 08-11 May 2023.
- Hanchard, M. (2023) 鈥楶aper in progress: Media framing of ALS treatments on Facebook and its relation to patient engagement鈥 (chair: Wadmann, S.) VIVA meeting, Copenhagen: Viva Head Office. 08-11 May 2023.
- Ding. J. (2023) 鈥楾he growing gap in orphan drug approvals between the FDA and EMA: A retrospective cohort study 2011-2020鈥(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). 鈥楢ccording to Google Images: Visual epistemologies of climate change and biodiversity loss鈥. (Poster). ORDA: 爆料TV. doi: .
- Hilberg, E. (2023) 鈥楾he next data revolution? - The promises of Real World Evidence鈥 (Chair: Hilberg, E.) Panel Economies of Hope/ Economies of Despair, International Studies Association (ISA) Annual Convention, Montr茅al, Canada, 15-18 March 2023.
- Hilberg, E., Kleinhout-Vliek, T. and van de Bovenkamp, H. (2022) 鈥楾he social lives of stories: The role(s) of accounts of rare disease from innovation to authorisation and marketing of orphan drugs.鈥, (Chair: T. Kleinhout-Vliek, C. Douglas and E. Hilberg) EASST Congress, Madrid, 06-209 July 2022.
- Hilberg, E. (2022) 鈥楧iagnosing a Differend 鈥 Strategic silences and omissions in reforms of orphan drug legislation鈥, 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) 鈥楾he next evidence revolution? - The promises of Real World Evidence鈥, SPIN Network Meeting, Paris, 19 May 2022.
- Hanchard, M. (2022) 鈥楽ocial media analysis of the debate around Zolgensma, SPIN Network Meeting, Paris, 19 May 2022.
- Ding, J. (2022) 鈥極rphan Drugs: Industry Dynamics & New Business Strategy鈥, SPIN Network Meeting, Paris, 19 May 2022.
- Martin, P. (2022) 鈥極rphanisation鈥, SPIN Network Meeting, Paris, 19 May 2022.
- Ding, J. (2021) 鈥楩ixing the broken model: AI, rare disease patient organisations and the repurposing of orphan drugs鈥, in Fair Medicine and Artificial Intelligence: Chances, Challenges, Consequences. 03-05-Mar-2021.
- Ding, J. (2021) 鈥榃hy do we need 3D printed pharmaceuticals鈥, Pop-up University, Sheffield; 爆料TV. 18,19-September-2021.
- Ding, J. (2021). 鈥楥omparing the landscape of orphan drug developments in the US and the EU鈥, in Weiner, K.. (Chair) Science Technology and Medicine in Society (STEMiS) new staff seminar. Sheffield: 爆料TV. 01-Dec-2021.
- Ding, J. (2021) 鈥楶harmaprojects Demonstration鈥, 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) 鈥楳y journey from photography to pharmaceutical policy via maps, films, and benches鈥, in Weiner, K. (Chair) Science Technology and Medicine in Society (STEMiS) new staff seminar. Sheffield: 爆料TV. 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) 鈥楾BC鈥, Social Network Analysis in Scotland (SNAS) group seminar, Wong, M. (Chair). University of Edinburgh: Edinburgh, 08-Mar-2022.
- Hilberg, E. (2021). 鈥楳olecular Sovereignties 鈥 Patients, Genomes, And The Enduring Biocoloniality Of Intellectual Property鈥, in Kleinhout-Vliek,T.,(Chair) 4S Annual Meeting: Transforming the Development & Governance of Pharmaceuticals III. Toronto: Virtual. 08-Oct-2021.
- Hilberg, E. (2021) 鈥楤iopolitics at the intersection of health and law鈥, in Weiner, K.. (Chairs) Science Technology and Medicine in Society (STEMiS) new staff seminar. Sheffield: 爆料TV. 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. 鈥極slo Medicines Initiative鈥 (technical report). Copenhagen: WHO Regional Office for Europe. Available at:
- Online content
- Hanchard, M. (2025, March 19) 鈥業RDiRC 鈥 (Re)Act: A call for open data and more repurposing for rare disease medicine鈥, iHuman,
- Hanchard, M. (2025, March 19) 鈥榃orld EPA Congress 2025: The landing of AI and growing appetite for transferable exclusivity鈥, iHuman,
- Hanchard, M. (2024, November 22) Debates over orphan drug pricing: a meta-narrative literature review, iHuman,
- Hanchard, M. (2024, June 21) NORD living rare, living stronger 鈥 Los Angeles, iHuman, ,
- Ding, J. (2024, 18 June) Reflecting on the 2024 Global Rare Disease Research Symposium, iHuman,
- Hanchard, M. (2024, June 04) International Workshop 鈥淒eveloping New Models for Pharmaceutical Innovation: towards a Mixed Economy鈥, iHuman,
- Hilberg, E. & Stelmach, A. (2024, May 04) Analysing Gene Therapies: A note on how to find the future, iHuman.
- Hilberg, E. (2023, May 19) Futuristic Healthcare, iHuman.
- Hilberg, E. & Kleinhout-Vliek, T. (2023, May 19) Focus on patients' stories, iHuman.
- Hanchard, M. (2023, May 19) The World EPA Congress and shift towards access equity and niche markets, iHuman.
- Hanchard, M. (2023, May 19) Working towards standardisation and collaboration across rare disease research, iHuman.
- Hanchard, M. (2023, May 19) Social pharmaceutical innovations (SPINs) in an era of orphanisation, iHuman.
- Hanchard, M. (2023, May 07) World Orphan Drug Congress USA - Boston 2024, iHuman.
iHuman
How we understand being 鈥榟uman鈥 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.