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Detecting cancer early is essential to improving cancer outcomes. Minoritized groups remain underrepresented in early detection cancer research, which means that findings and interventions are not generalisable across the population, thus exacerbating disparities in cancer outcomes. In light of these challenges, this paper sets out twelve recommendations to build relations of trust and include minoritized groups in ED cancer research. The Recommendations were formulated by a range of stakeholders at the 2022 REPRESENT consensus-building workshop and are based on empirical data, including a systematic literature review and two ethnographic case studies in the US and the UK. The recommendations focus on: Long-term relationships that build trust; Sharing available resources; Inclusive and accessible communication; Harnessing community expertise; Unique risks and benefits; Compensation and support; Representative samples; Demographic data; Post-research support; Sharing results; Research training; Diversifying research teams. For each recommendation, the paper outlines the rationale, specifications for how different stakeholders may implement it, and advice for best practices. Instead of isolated recruitment, public involvement and engagement activities, the recommendations here aim to advance mutually beneficial and trusting relationships between researchers and research participants embedded in ED cancer research institutions.
Detecting cancer early is essential to improving cancer outcomes. Minoritized groups remain underrepresented in early detection cancer research, which means that findings and interventions are not generalisable across the population, thus exacerbating disparities in cancer outcomes. In light of these challenges, this paper sets out twelve recommendations to build relations of trust and include minoritized groups in ED cancer research. The Recommendations were formulated by a range of stakeholders at the 2022 REPRESENT consensus-building workshop and are based on empirical data, including a systematic literature review and two ethnographic case studies in the US and the UK. The recommendations focus on: Long-term relationships that build trust; Sharing available resources; Inclusive and accessible communication; Harnessing community expertise; Unique risks and benefits; Compensation and support; Representative samples; Demographic data; Post-research support; Sharing results; Research training; Diversifying research teams. For each recommendation, the paper outlines the rationale, specifications for how different stakeholders may implement it, and advice for best practices. Instead of isolated recruitment, public involvement and engagement activities, the recommendations here aim to advance mutually beneficial and trusting relationships between researchers and research participants embedded in ED cancer research institutions.
One of the core principles of providing care in general practice is giving more to those who need it most. We investigate some of the complexities of this ambition in the context of cancer care for patients defined as socially disadvantaged by their general practitioner (GP). We do this by exploring how care is sought, how it is offered, and what expectations patients and GPs carry with them when receiving and providing cancer care in the Danish welfare state. We carried out semi-structured interviews with eight GPs and seven socially disadvantaged cancer patients living with different types and stages of cancer. The interviews focused on needs and challenges in cancer follow-up in general practice and were thematically coded. Drawing on theoretical concepts of morality and Nordic individualism, we point to how one of the main challenges in cancer care and follow-up is to figure out how the doctor-patient relationship should be established, practiced, and maintained. Both GPs and patients stressed the importance of the relationship, but how it should be practiced amidst social norms about being a patient, a citizen and how care-seeking should unfold seems less clear. In conclusion we argue that giving more to those who need it the most is a difficult and ill-defined task that is shaped by the cultural, social, and political expectations of both GPs and patients.
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