Abstract

Background: Shared Lives: Cancer (SL:C) is an innovative approach to making qualitative research data publically available. SL:C aims to support people living with and affected by cancer and cancer professionals. Developed collaboratively by the University of Lincoln, Lincolnshire Clinical Commissioning Group, and Macmillan Cancer Support. SL:C comprises a library of over anonymised 3000 quotes pertaining to people’s cancer experience. Ten anonymised patient stories, further support the quote database. Signposting to existing support and resources, are provided to help facilitate engagement with self-management.

Methods: SLC has been developed using the data from 3 independent research studies (2017-2019) undertaken with people living with and affected by cancer, which resulted in 34 interview transcripts and 183 survey free-text comments. All studies were subject to the appropriate ethical and research governance approvals. The 217 participant contributions were consolidated and thematically coded as a single data-set. The project is defined as dissemination, therefore, no analysis was performed.

Results: Coding resulted in the identification of 870 unique quotes that are searchable by 40 broad themes and over 70 keywords that can be filtered by age, gender, cancer type, and treatment received. For example, someone might wish to search by ‘exercise’, ‘fatigue and tiredness’ ‘chemotherapy’ or ‘prostate cancer’, and quotes that have been assigned to these themes/keywords will be displayed.

Conclusion: SL:C is a new and innovative approach to the dissemination of academic research. SL:C has the potential to support people living with and affected by cancer at all stages of the cancer journey, as well as helping professionals, researchers, and the general public to better understand the cancer experience, which consequently, could improve care outcomes for people living with cancer.

Impact Statement: SL:C, will continually evolve through collaboration and an independent associated project that will enable users to share their stories, therefore, SL:C has the potential to reach people living with cancer at a national and international level.