“Being Human”: A Grounded Theory of Complexity and Serendipity in Cancer Clinical Trials.
Creators: name: Markham-Jones, Helene
Publisher: name: University of Lincoln
Year: 2023
Subjects: B990 - Subjects allied to medicine not elsewhere classified

description: AbstractBackgroundCancer presents a complex and intractable disease resulting in millions of deaths worldwide each year. As a metastatic disease bearing metamorphic characteristics, cancer’s emergent properties continue to challenge science, medicine, and society. Cancer research is a specialist field crucial to the advancement of patient treatment and care, yet it faces growing challenges due to the complex nature of an evolving disease, stratified treatments, and intensive trial protocols, compounded by increasing global disease burdens. Human ingenuity and resiliency are central to overcoming the greatest challenges facing contemporary populations, achieved through research innovation and knowledge exchange across ranging disciplines. Improving population health and patient-centred outcomes stands at the fore of global challenges facing society in the twenty first century, requiring novel and dynamic responses to increasing chronic disease burdens and exposure risks to emergent viral pathogens. AimsThe aim of this thesis was to understand the nature of cancer clinical trial operational delivery, evaluating challenges and burdens of professionals and patients participating in cancer research studies. The nature of multi-agency working and transdisciplinarity across health sciences is as complex as the biological and societal challenges that their research seeks to address. Establishing sustainable, cohesive, and collaborative relationships across the medical continuum is pivotal to solving persistent challenges of complex diseases and societal burdens. The study sought to develop a contextualised grounded theory elucidating situated challenges and complexity experienced at NHS sites in the UK. The purpose of the grounded theory would be to support the development of enhanced, person-centred models of clinical research operational delivery, which could respond to emergent and dynamically adaptive healthcare and epidemiological population needs. MethodsEvaluating Follow-up and Complexity in cancer Clinical Trials (EFACCT), the study presented in this thesis, was conducted at ranging NHS secondary care sites in England and Scotland. Drawing on constructivist grounded theory (Charmaz, 2006), the multi-faceted realities of cancer clinical trial delivery are unveiled, using a mixed methods–grounded theory (MM-GT) design. The comprehensive, contextual evaluation combines evidence from quantitative and qualitative paradigms, using inductive and deductive methods. The study drew together multifaceted perspectives and values of 165 participants from six studies; Delphi, questionnaire, and interview studies, separated into patient and professional cohorts. ResultsThe research provides original insights into the nature of cancer research delivery, its challenges and complexities, highlighting the importance of coherency in healthcare systems. The Constructivist Grounded Theory presented in this thesis, provides an organising framework and practical model for managing and embracing transformative learning and practice in response to dynamically evolving challenges that exist within complex healthcare delivery systems and networks. The original data generated provides new knowledge on the human aspects of clinical research and the contexts for its practice. The situated experiences led to the development of a grounded theory of human perceptions of complexity and serendipity in clinical research and the conception of a Prismatic Coherence Model (PCM) for the evaluation and designing of patient care and follow-up and the effective operational management of complex relationships, practices and processes existing within adaptive clinical research and healthcare delivery systems. PCM is an inclusive and responsive strategic design approach, sensitive to variable contexts and system complexities, and promotes transdisciplinarity in order to advance opportunities, knowledge and resources to advance population health through clinical research.