BackgroundMost cancers are diagnosed following contact with primary care. Patients diagnosed with cancer often see their doctor multiple times with potentially relevant symptoms before being referred to see a specialist, suggesting missed opportunities during doctor-patient conversations.ObjectiveTo understand doctor-patient communication around the significance of persistent or new presenting problems and its potential impact on timely cancer diagnosis.Research designQualitative thematic analysis based on video recordings of doctor-patient consultations in primary care and follow-up interviews with patients and doctors. 80 video observations, 20 patient interviews and 7 doctor interviews across 7 general practices in England.ResultsWe found that timeliness of diagnosis may be adversely affected if doctors and patients do not come to an agreement about the presenting problem’s significance. ‘Disagreements’ may involve misaligned cognitive factors such as differences in medical knowledge between doctor and patient or misaligned emotional factors such as patients’ unexpressed fear of diagnostic procedures. Interviews suggested that conversations where the difference in views is either not recognised or stays unresolved may lead to unhelpful patient behaviour after the consultation (eg, non-attendance at specialist appointments), creating potential for diagnostic delay and patient harm.ConclusionsOur findings highlight how doctor-patient consultations can impact timely diagnosis when patients present with persistent or new problems. Misalignments were common and could go unnoticed, leaving gaps for potential to cause patient harm. These findings have implications for timely diagnosis of cancer and other serious disease because they highlight the complexity and fluidity of the consultation and the subsequent impact on the diagnostic process.
Background and Rationale: Internationally, the idea of "co-production' has become more popular in health research because of the promise of partnership between researchers and patients to create research that focuses on patients' needs. Patient and public involvement (PPI) at an early stage in deciding what research should be funded, can improve the quality and impact of research. However, professional power over the process places limits on the public practising their participatory rights for involvement in commissioning research that affects them and can leave members of the public feeling unheard or excluded, particularly within the context of early phase applied health research. Aim: This article explores whether and how the public can be involved in the co-production of research commissioning early on in the process, with a focus on the power relations that pervade basic and early phase translational applied health research. Methods: An exploratory literature review of international peer-reviewed and gray health research literature using structured searches of electronic databases and key search terms. Results: There is very little literature that critically evaluates how PPI is embedded into the early phases of the commissioning process. The field of basic or early translational applied research appear to be particularly challenging. Four themes which emerged from the review are: reasons for PPI in research commissioning; benefits of PPI at strategic levels of research commissioning; contributions of patients and members of the public; improving PPI in research commissioning. Conclusion: Although the public are being consulted at some stages of the research commissioning process, it is evident that the process of determining research priorities and agendas is far from being widely co-produced. Moving PPI from a consultative paternalistic model to a collaborative partnership model should be a priority for commissioners. Significant changes to communication, practices, systems, structures, or cultures that exclude patients and the public from contributing in meaningful ways, are needed to fulfill the potential of co-produced models of research commissioning.
Objective Oesophageal cancer patients have complex care needs. Cancer clinical nurse specialists play a key role in coordinating their care but often have heavy workloads. Digital health interventions can improve patient care but there are few examples for oesophageal cancer. This paper aims to describe the multidisciplinary co-design process of a digital health intervention to improve the experience of care and reduce unmet needs among patients with oesophageal cancer. Methods A theory-based, multi-disciplinary, co-design approach was used to inform the developmental process of the digital health intervention. Key user needs were elicited using mixed methodology from systematic reviews, focus groups and interviews and holistic need assessments. Overarching decisions were discussed among a core team of patients, carers, health care professionals including oncologists and cancer clinical nurse specialists, researchers and digital health providers. A series of workshops incorporating a summary of findings of key user needs resulted in the development of a minimum viable product. This was further refined after a pilot study based on feedback from end users. Results The final digital health intervention consists of a mobile app feature for patients and carers connected to a dashboard with supporting additional features for clinical nurse specialist. It contains a one-way messaging function for clinical nurse specialists to communicate with patients, functions for patients to record weight and holistic need assessment results which could be viewed by their clinical nurse specialists as well as a library of informative articles. Conclusions The multidisciplinary co-design of a digital health intervention providing support for oesophageal cancer patients and health care professionals has been described. Future studies to establish its impact on patient outcomes are planned.
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