Developing Shared Lives®: Cancer Implementation of an innovative digital health tool to promote academic data sharing and to support those affected by cancer Final Report

Introduction Shared Lives®: Cancer (SL:C) is a patient-centred online digital health tool that is being developed specifically to disseminate cancer associated lived experience academic research data for the specific purpose of providing an innovative platform that supports people living with and affected by cancer. SL:C has been continuously informed throughout its development via an informal network comprised of academics, cancer healthcare professionals, and experts by lived cancer experience. Conducting this research has helped to inform the development of SL:C as an accessible and suitable digital health tool that meets the needs of its intended target audience.BackgroundThere were an estimated 18.1 million new cancer diagnoses globally in 2018 (Bray et al., 2018). With it predicted that there will be four million people in the UK, living with and beyond cancer by 2030 (Maddams et al., 2012). This can be attributed to advances in screening, earlier detection, diagnostic methods, and improved treatments (Siegal et al., 2021; Hanna et al, 2020; Arnold et al., 2019, Loud and Murphy, 2017). The ongoing COVID-19 pandemic has resulted in a shift to relying on digital and remote support in the delivery of oncological care (Burki, 2020). As such, digital interventions are increasingly being used to support people living with and beyond cancer (Escriva Boulley, et al., 2018). Digital interventions, therefore, have the potential to provide an excellent source of support for people living with and affected by cancer. Specifically, they can help people to cope better with the disease and side effects, as well as improving self-management and wellbeing (Escriva Boulley, et al., 2018). Introducing Shared Lives®: CancerThe idea for a new online resource began following the completion of Dr. David Nelson’s (DN) PhD at the University of Lincoln in 2020. This study, titled Self-management in people living with and beyond cancer in a rural and urban setting, explored cancer survivorship and recovery with people across the East Midlands of England. Following completion of this work, a colleague, proposed that the data collected could be disseminated more widely beyond the remit of academic outputs, to support self-management and wellbeing. From which the concept to develop a new patient-centred, web-based, support tool for people living with and affected by cancer was generated.The Shared Lives®: Cancer (SL:C), is a new patient-centred, web-based, support tool for people living with and affected by cancer and uses a novel approach to disseminating academic research. The SL:C is intended to benefit the wider society by engaging a public audience with patient voice, lived experience cancer associated data. However, prior to making SLC publicly available, user centred testing of the tool’s structure, content, and navigational approach is needed to ensure SLC is developed to meet the needs of its anticipated audience.Aims To systematically inform the development of SL:C through actionable evidence relating to themes of website usability to ensure SL:C is fit for purpose, as a web-based, support tool, for people living with and affected by cancer.MethodsThe study was undertaken as two complementary Work Packages. Each Work Package addressed a specific set-of interrelated questions that contributed to the overall work. Work Package-1 – Identifying and Mapping Existing Evidence: Rapid Systematic Review The rapid review highlighted the use of iterative, co-designed methodological approaches to developing web-based resources for supporting people living with and affected by cancer. A wide range of quantitative and qualitative research methods were identified for the development of resources across studies, most notably: interviews, focus groups, think aloud cognitive analysis, workshops, surveys/questionnaires, and website analytics. Studies also underlined the importance in not only directly engaging with those living with and beyond cancer, but also those who may be of wider interest including healthcare professionals, carers of cancer patient and survivors, and academics.Work Package-2 – Phase-1 Prototype Usability Testing Prototype usability testing aimed to ensure SL:C is perceived by its end users as both usable, credible and fit for purpose as a patient-centred web-based support tool, that supports self-management and the wellbeing of people living with and affected by cancer. Usability testing a prototype version of SL:C was invaluable to enable systematically informed modification relating to themes of website usability. A semi-structured interview topic guide was developed grounded in the analysis framework (Chang, et al 2021; Zhao et al 2012) developed specifically for the current study. The topic guide was specifically developed to enable the research team to explore issues of salience for the participant during the systematic review of each web page and was designed to explore 5 key areas for website development that included:? Aesthetics ? Layout? Content? Navigation? FunctionalityResultsWork package-1 resultsThe rapid review highlighted the use of iterative, co-designed methodological approaches to developing web-based resources for supporting people living with and affected by cancer. A wide range of quantitative and qualitative research methods were identified for the development of resources across studies, most notably: interviews, focus groups, think aloud cognitive analysis, workshops, surveys/questionnaires, and website analytics. Studies also underlined the importance in not only directly engaging with those living with and beyond cancer, but also those who may be of wider interest including healthcare professionals, carers of cancer patient and survivors, and academics.Work package-2 resultsFifteen participants were recruited to the study. All were highly proficient internet users. All prototype usability testing was conducted on a laptop or desktop computer. Lack of content and functionality guidance resulted in many participants providing valuable suggestions to enhance the visitor experience, promote engagement, and content they would like to see. Participants suggestions help to reinforce the development of SL:C as a new resource. Overall, the design, colour scheme, logo, general visuals, navigation, and ease of use were well liked. Generally, it was considered that visitors would not have problems navigating SL:C. Even with minimal written content, after viewing SL:C, participants had a good understanding of what as a resource SL:C intends to present and achieve through its creation. The results, however, did demonstrate, that without orientating content to guide expectations, and describing the purpose of each webpage, confusion often occurred, even when a participant sample is comprised of confident and highly experienced internet users. ConclusionThe current study is of significant value, informing knowledge and theoretical insights surrounding the usability and role of SL:C. SL:C has the potential to become an important web-based tool that supports people living with and affected by cancer. The quotes and lived experience stories within SL:C also have the potential to be used within staff and student training and other forms of professional development, and printed materials.