1. ABOUT THE DATASET -------------------- Title: Translations and Transformations in patienthood: Cancer in the post-genomics era Creator(s): Anne Kerr [1]; Choon Key Chekar [2]; Julia Swallow [3] Organisation(s): 1. University of Glasgow 2. University of Lancaster 3. University of Edinburgh Rights-holder(s): Anne Kerr, Choon Key Chekar, Julia Swallow Publication Year: 2022 Description: A collection of interviews with patients, former patients, carers, advocates and professionals on their perspectives and experiences of targeted treatments for cancer. Cite as: Kerr, Chekar and Swallow (2022) Dataset for ‘Translations and Transformations in patienthood: Cancer in the post-genomics era’ University of Glasgow, University of Lancaster, University of Edinburgh https://doi.org/ 10.5518/1247 Related publications: Kerr, A. , Chekar, C. K., Ross, E., Swallow, J. and Cunningham-Burley, S. (2021) Personalised Cancer Medicine: Future Crafting in the Genomic Era. Manchester University Press. ISBN 9781526141026 Ross, E., Swallow, J., Kerr, A. , Chekar, C. K. and Cunningham-Burley, S. (2021) Diagnostic layering: patient accounts of breast cancer classification in the molecular era. Social Science and Medicine, 278, 113965. (doi: 10.1016/j.socscimed.2021.113965) (PMID:33940433) (PMCID:PMC8146724) Kerr, A. , Chekar, C. K., Swallow, J., Ross, E. and Cunningham-Burley, S. (2021) Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities. New Genetics and Society, 40(1), pp. 112-131. (doi: 10.1080/14636778.2020.1868986) (PMCID:PMC8547735) Swallow, J., Kerr, A. , Chekar, C. K. and Cunningham-Burley, S. (2020) Accomplishing an adaptive clinical trial for cancer: Valuation practices and care work across the laboratory and the clinic. Social Science and Medicine, 252, 112949. (doi: 10.1016/j.socscimed.2020.112949) (PMID:32278242) (PMCID:PMC7193889) Kerr, A. , Swallow, J., Chekar, C. K. and Cunningham-Burley, S. (2019) Genomic research and the cancer clinic: uncertainty and expectations in professional accounts. New Genetics and Society, 38(2), pp. 222-239. (doi: 10.1080/14636778.2019.1586525) (PMID:31156350) (PMCID:PMC6519890) Contact: Anne.Kerr@glasgow.ac.uk 2. TERMS OF USE --------------- Copyright 2022 Anne Kerr, Choon-Key Chekar, Julia Swallow This dataset is licensed under a Creative Commons Attribution 4.0 International Licence: https://creativecommons.org/licenses/by/4.0/. 3. PROJECT AND FUNDING INFORMATION ---------------------------------- Title: Translations and Transformations in Patienthood: Cancer in the post-genomic era Dates: 2015-2021 Funding organisation: Wellcome Trust Grant no.: 104832/Z/14/Z 4. CONTENTS ----------- File listing Data set Patients Family members Advocates Professionals NHS Case Study 1 [Feasibility Study molecular profiling in ovarian cancer] NHS Case Study 1_Patient_1.doc NHS Case Study 1_Patient_2.doc NHS Case Study 1_Patient_3.doc NHS Case Study 1_Patient_4.doc NHS Case Study 1_Patient_5.doc NHS Case Study 1_Patient_6.doc NHS Case Study 1_Patient_7.doc NHS Case Study 1_Patient_8.doc NHS Case Study 1_Patient_9.doc NHS Case Study 1_Patient_10.doc NHS Case Study 1_Patient_11.doc NHS Case Study 1_Patient_12.doc NHS Case Study 1_Patient_13.doc NHS Case Study 1_Patient_14.doc NHS Case Study 1_Patient_15.doc NHS Case Study 1_Patient_16.doc NHS Case Study 1_Family Member_1.doc NHS Case Study 1_Family Member_2.doc NHS Case Study 1_Family Member_3.doc NHS Case Study _Family Member_4.doc NHS Case Study _Family Member_5.doc NHS Case Study 1_Family Member_6.doc NHS Case Study 1_Family Member_7.doc NHS Case Study 2 [Whole Genome Sequencing] NHS Case Study 2_Patient_1.doc NHS Case Study 2_Patient_2.doc NHS Case Study 2_Patient_3.doc NHS Case Study 2_Patient_4.doc NHS Case Study 2_Patient_5.doc NHS Case Study 2_Patient_6.doc NHS Case Study 2_Patient_7.doc NHS Case Study 2_Patient_8.doc NHS Case Study 2_Patient_9.doc NHS Case Study 2_Patient_10.doc NHS Case Study 2_Patient_11.doc NHS Case Study 2_Patient_12.doc NHS Case Study 2_Patient_13.doc NHS Case Study 2_Patient_14.doc NHS Case Study 2_Patient_15.doc NHS Case Study 2_Patient_16.doc NHS Case Study 2_Patient_17.doc NHS Case Study 2_Family Member_1&2.doc NHS Case Study 2_Family Member_3.doc NHS Case Study 3 [Trial of experimental treatments lung cancer] NHS Case Study 3_Patient_1.doc NHS Case Study 3_Patient_2.doc NHS Case Study 3_Patient_3.doc NHS Case Study 3_Patient_4.doc NHS Case Study 3_Patient_5.doc NHS Case Study 3_Patient_6 and Family member_1.doc NHS Case Study 3_Patient_7 and Family member_2.doc NHS Case Study 3_Patient_8 and Family member_3.doc NHS Case Study 4 [Oncogene test breast cancer] NHS Case Study 4_Patient_1.doc NHS Case Study 4_Patient_2.doc NHS Case Study 4_Family Member_1.doc Case Study 5 [Crowdfunding for targeted treatments] Case Study 5_Crowdfunding 1.doc Case Study 5_Crowdfunding 2.doc Case Study 5_Crowdfunding 3.doc Case Study 5_Crowdfunding 4.doc Other Patients Patient_Other_1.docx Patient_Other_2.docx Patient_Other_3.docx Patient_Other_4.docx Patient_Other_5.docx Former Patients Scoping Interview Former Patient 1.doc Scoping Interview Former Patient 2.doc Scoping Interview Former Patient 3.doc Scoping Interview Former Patient 4.doc Scoping Interview Former Patient 5.doc Scoping Interview Former Patient 6.doc Scoping Interview Former Patient 7.doc Scoping Interview Former Patient 8.doc Scoping Interview Former Patient 9.doc Scoping Interview Former Patient 10_Interview 1.doc Scoping Interview Former Patient 10_Interview 2.doc Scoping Interview Former Patient 11.doc Scoping Interview Former Patient 12.doc Scoping Interview Former Patient 13.doc Scoping Interview Former Patient 14.doc Scoping Interview Former Patient 15_Interview 1.doc Scoping Interview Former Patient 15_Interview 2.doc Scoping Interview Former Patient 16_Interview 1.doc Scoping Interview Former Patient 16_Interview 2.doc Scoping Interview Former Patient 17.doc Scoping Interview Former Patient 18.doc Scoping Interview Former Patient 19.doc Scoping Interview Former Patient 20.doc Scoping Interview Former Patient 21.doc Scoping Interview Former Patient 22.doc Scoping Interview Former Patient 23.doc Scoping Interview Former Patient 24.doc Scoping Interview Former Patient 25.doc Scoping Interview Former Patient 26.doc Patient Advocates Patient Advocate 1.doc Patient Advocate 2.doc Patient Advocate 3.doc Patient Advocate 4.doc Patient Advocate 5.doc Patient Advocate 6.doc Patient Advocate 7.doc Patient Advocate_PPI Panel Member 2.doc Patient Advocate_PPI Panel Member 3.doc Practitioners Practitioner_Geneticist 1.docx Practitioner_Clinical Nurse Specialist 1.docx Practititoner_Clinical Oncologist 1.docx Practitioner_Consultant Geneticist 1.docx Practitioner_Consultant Hematopathologist 1.docx Practitioner_Consultant Histopathologist 1.docx Practitioner_Consultant Oncologist 1.docx Practitioner_Consultant Oncologist 2 (Part 1).docx Practitioner_Consultant Oncologist 2 (part 2).docx Practitioner_Consultant Oncologist 4.docx Practitioner_Consultant Oncologist 5.docx Practitioner_Consultant Oncologist 6.docx Practitioner_Consultant Oncologist 7.docx Practitioner_Consultant Physician 1.docx Practitioner_Consultant Physician 2.docx Practitioner_Consultant Surgeon 1.docx Practitioner_GMC Specialist Nurse 1.docx Practitioner_GMC Specialist Nurse 2.docx Practitioner_GMC Specialist Nurse 3 (partial transcription).docx Practitioner_Nurse Consultant 1.docx Practitioner_Pathologist 1.docx Practitioner_Pathologist 2.docx Practitioner_Pathologist 3.docx Practitioner_Research Nurse 1.docx Practitioner_Research Nurse 2.docx Practitioner_Research Nurse 3.docx Practtiioner_Trainee Healthcare Scientist 1.docx Practitioner_Trainee Oncologist 1.docx Practitioner_Biochemist 1.docx Practitioner_Biologist 1.docx Practitioner_Clinical Bioinformatician 1.docx Practitioner_Clinical Scientist 1.docx Practitioner_Clinical Trials Assistant 1.docx Practitioner_Clinician Scientist 1.docx Practitioner_Computational Biologist 1.docx Practitioner_Genetic Counsellor 1.docs Practitioner_Genetic Counsellor 2.docx Other Professionals Other_Clinical Director Genomics Medicine Centre.docx Other_Clinical Lead 100,000 Genomes Project.docx Other_CRUK Clinical Trial Director.docx Other_Former CRUK Clinical Trial Director.docx Other_Pharma network manager.docx Other_Strategy and Planning Director.docx 5. METHODS ---------- Semi-structured qualitative interviews recorded and transcribed verbatim; part of wider ethnographic study – for further details see Kerr, A. , Chekar, C. K., Ross, E., Swallow, J. and Cunningham-Burley, S. (2021) Personalised Cancer Medicine: Future Crafting in the Genomic Era. Manchester University Press. ISBN 9781526141026