Shared Lives: Cancer – Developing an Online Resource to Support People Affected by Cancer through Making Academic Research Publicly Accessible.


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Heidi Green, David Nelson, Ros Kane, Kathie McPeake, Ruth Willis

Abstract

Background

Shared Lives: Cancer (SL:C) is an innovative approach to making qualitative research data publicly 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 3000 anonymised patient 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.

Method

SL:C has been developed utilising data from 3 research studies (2017-19) undertaken with people living with and affected by cancer that 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 dataset. 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 potential to support people living with and effected 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 health and care outcomes. 

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 potential to reach, and support people living with cancer, at a national and international level.