On World Cancer Day, Dr Sharon Tonner reflects on the theme 'United by Unique', sharing how the team in our Cancer Theme is navigating and addressing the need for patient centred care and inclusive, equitable research.
A diagnosis of cancer is, for most, a highly medicalised experience. There will be what may feel like endless tests, procedures and hospital visits and that can obscure the fact that every person’s experience of diagnosis, and what follows, is unique and personal to them.
Patient focused care, where it is acknowledged that individuals have different needs, preferences and values is essential to better health outcomes. Health systems are huge, complex, organisations however and challenges to fully realising patient focused care remain. One of the roles of research, including cancer research, is to identify and navigate these challenges.
In the Cancer Theme in NDPCHS, we have recently published A Manifesto for improving cancer detection: four key considerations when implementing innovations across the interface of primary and secondary care where we discuss some of these challenges and how to approach them to ensure both sustainability and equity in cancer care. Achieving long-term improvements in cancer detection that will benefit everyone involves engaging a broad range of stakeholders at the design stage, taking a ‘whole-system’ approach in planning, and dedicating time to anticipating unintended consequences of change.
Tackling health inequities must be at the centre of patient focused care. The nature of inequity means that those who would benefit most are often the least heard. In partnership with our colleagues at NIHR ARC Oxford and Thames Valley we have recently created the new role of Community Liaison Manager and are delighted to have appointed Haleema Aslam.
Haleema’s role will be to forge direct community links with currently underrepresented groups (for example, ethnic minority and low-income groups, LGBTQ+ individuals, those living with disabilities and livening in coastal communities). We hope that by listening, and acting on feedback, we can improve the representation of those who are often excluded from research to produce outcomes that truly reflect the population and benefits all.
Haleem said: “Cancer is increasing amongst all populations, but not all populations are able to access cancer services as easily as others. I look forward to addressing this inequity by working in partnership with local partners, members of the public and health professionals as Community Liaison Manager”.
One of the first community liaison activities we will be organising, thanks to funding from NIHR School of Primary Care Research, is a stall at London Pride in July to showcase, and demystify, our research with the aim of encouraging more members of the LGBTQ+ community to participate in Patient and Public Involvement and Engagement events and in research more generally.
Dr Pradeep Virdee, Senior Medical Statistician in the Cancer Theme, said: “Pride offers an opportunity for us to meaningfully engage with the LGBTQ+ community and capture diverse perspectives about cancer research. We hope to increase the community’s involvement in our cancer research and ensure this translates to improved cancer care for LGBTQ+ people.”
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