91Ö±²¥

See all our project outputs below, and individual staff pages for team members on the 91Ö±²¥ page. The list is updated regularly.

Articles, books, and chapters

• Hilberg, E. & Stelmach, A. (2024, May 04) Analysing Gene Therapies: A note on how to find the future, iHuman. /ihuman/blog/analysing-gene-therapies-note-how-find-future
   
• Hanchard, M. (2023, May 07) World Orphan Drug Congress USA - Boston 2024, iHuman. /ihuman/blog/world-orphan-drug-congress-usa-boston-2024
   
• 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.
   
• Hilberg, E. (2023, May 19) Futuristic Healthcare, iHuman. /ihuman/ihuman-blog/futuristic-healthcare
   
• Hilberg, E. & Kleinhout-Vliek, T. (2023, May 19) Focus on patients' stories, iHuman.  /ihuman/ihuman-blog/focus-patients-stories
   
• Hanchard, M. (2023, May 19) The World EPA Congress and shift towards access equity and niche markets, iHuman. /ihuman/ihuman-blog/world-epa-congress-and-shift-towards-access-equity-and-niche-markets
   
• Hanchard, M. (2023, May 19) Working towards standardisation and collaboration across rare disease research, iHuman. /ihuman/ihuman-blog/irdirc2023
   
• Hanchard, M. (2023, May 19) Social pharmaceutical innovations (SPINs) in an era of orphanisation, iHuman. /ihuman/ihuman-blog/social-pharmaceutical-innovations-spins-era-orphanisation
   
• 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) ‘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: .
   
• Hanchard, M. (2022) ‘Issue-networks as omitted publics in the construction of #rarediseaseday discourse’, Wellcome Open Research, 7(276), doi: .
   
• 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:  
   
• 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: 91Ö±²¥. doi:
   
• 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: .
   
• Ding, J., Baumers, M., Clark, E. A., & Wildman, R. (2021) ''. International Journal of Production Economics, 237, 108087

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, 15^th-18^th March 2023.
   
• Hanchard, M. (2023) ‘Models of Data Deposition’ (Chair: Adams, J.) Open Research in Practice panel, OpenFest, 91Ö±²¥:University of 91Ö±²¥. 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, 91Ö±²¥; 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. 91Ö±²¥: University of 91Ö±²¥. 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. 91Ö±²¥: University of 91Ö±²¥. 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)&²Ô²ú²õ±è;‘Tµþ°ä’, 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. 91Ö±²¥: University of 91Ö±²¥. 01-Dec-2021.

Reports and Policy briefs

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Online content

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