Clinical reporting for personalized cancer genomics requires extensive access to subscription-only literature

Authors

  • Schnell D'Souza University of Guelph, Guelph, ON, Canada. https://orcid.org/0000-0002-3477-7753
  • Gregory Downs University Health Network, Toronto, ON, Canada.
  • Shawn Hendrikx Collections and Content Strategies Librarian, Western University, London, ON, Canada. https://orcid.org/0000-0001-7438-9440
  • Rouhi Fazelzad Information Specialist, Library and Information Services, University Health Network, Toronto, ON, Canada. https://orcid.org/0000-0002-8316-7759
  • Gabriel Boldt Clinical Librarian, London Health Sciences Centre, London Regional Cancer Program, London, ON, Canada. https://orcid.org/0000-0002-8356-6338
  • Karen Burns University Health Network, Toronto, ON, Canada.
  • Darlene Chapman Operations Manager, Library Services, IWK Health, Halifax, NS, Canada.
  • Declan Dawes niversity of Toronto, Toronto, ON, Canada.
  • Antonia Giannarakos Senior Librarian, Library & Knowledge Services Canada, Trillium Health Partners, Mississauga, ON, Canada.
  • Lori Anne Oja Executive Director HSICT, Health Sciences Information Consortium of Toronto, Toronto, ON, Canada. https://orcid.org/0000-0002-1207-8425
  • Risa Schorr The Ottawa Hospital, Ottawa, ON, Canada.
  • Maureen Babb Science Liaison Librarian, University of Manitoba, Winnipeg, MB, Canada. https://orcid.org/0000-0002-3493-2522
  • Amada Hodgson University of Ottawa, Ottawa, ON, Canada. https://orcid.org/0000-0002-9750-6651
  • Jessica McEwan User Experience Librarian, University of Ottawa, Ottawa, ON, Canada.
  • Pamela Jacobs University of Guelph, Guelph, ON, Canada.
  • Tracy Stockley University Health Network, Toronto, ON, Canada.
  • Tim Tripp Director, Library & Information Services, University Health Network, Toronto, ON, Canada. https://orcid.org/0000-0003-3967-2181
  • Ian King University Health Network, Toronto, ON, Canada.

DOI:

https://doi.org/10.5195/jmla.2023.1572

Keywords:

Cancer, Genetics, Open Access, University Collections, Health Sciences Library Collections, Subscription Access, Precision Medicine, Pathology, Oncology

Abstract

Objective: Medical care for cancer is increasingly directed by genomic laboratory testing for alterations in the tumor genome that are significant for diagnosis, prognosis and therapy. Uniquely in medicine, providers must search the biomedical literature for each patient to determine the clinical significance of these alterations. Access to published scientific literature is frequently subject to high fees, with access limited to institutional subscriptions. We sought to investigate the degree to which the scientific literature is accessible to clinical cancer genomics providers, and the potential role of university and hospital system libraries in information access for cancer care.

Methods: We identified 265 journals that were accessed during the interpretation and reporting of clinical test results from 1,842 cancer patients at the University Health Network (Toronto, Canada). We determined the degree of open access for this set of clinically important literature, and for any journals not available through open access we surveyed subscription access at seven academic hospital systems and at their affiliated universities.

Results: This study found that nearly half (116/265) of journals have open access mandates that make articles freely available within one year of release. For the remaining subscription access journals, universities provided a uniformly high level of access, but access available through hospital system collections varied widely.

Conclusion: This study highlights the importance of different modes of access to the use of the scientific literature in clinical practice and points to challenges that must be overcome as genomic medicine grows in scale and complexity.

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Published

2023-04-21

Issue

Vol. 111 No. 1/2 (2023): January/April 2023

Section

Original Investigation

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Copyright (c) 2023 Schnell D'Souza, Gregory Downs, Shawn Hendrikx, Rouhi Fazelzad, Gabriel Boldt, Karen Burns, Darlene Chapman, Declan Dawes, Antonia Giannarakos, Lori Anne Oja, Risa Schorr, Maureen Babb, Amada Hodgson, Jessica McEwan, Pamela Jacobs, Tracy Stockley, Tim Tripp, Ian King

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