Introduction: While access to health care is free in Australia, access to lung cancer treatments is not always affordable or timely, especially for a rare cancer patient like the author Diagnosed with ROS1+ NSCLC, the author had to crowdfund to pay for her first targeted therapy the price of which exceeded what most Australians could afford Acutely aware that her participation in a subsequent clinical trial is uncommon for someone with a similar minority background, the author seeks to explore the concept of patient experience in the context of diversity and inequity Patient experience is multidimensional and integrated The quality and safety of services provided, the costs incurred, and the outcomes achieved are all important facets of the patient experience [1] The ultimate goals of advocates are to achieve optimal patient experience by ensuring that patients’ needs are heard, and problems are resolved To do this effectively, advocates must understand the unmet needs of the patients they seek to represent However, lung cancer patient experience is not homogenous and is impacted by social determinants In Australia, lung cancer outcomes differ across socioeconomic status (SES), indigenous status and remoteness For example: (a) the incidence rates of lung cancer in 2010-14 were 27% higher in remote and very remote areas combined, compared to major Australian cities;(b) the mortality rate was highest in the lowest SES areas (SES1, 38 5 per 100,000 persons), compared to the highest SES areas (SES5, 20 1 per 100,000 persons);and (c) the 5-year survival rate for lung cancer in 2010-2014 was 8 5% for Indigenous Australians compared to 14 2% for non-Indigenous Australians [2] Health inequities exist both within and among countries [3], so the lung cancer patient experience would no doubt also differ within and between countries The aim of this presentation is to draw insights from the author’s lung cancer patient experience as well as patient anecdotes from other countries and continents Method: Three separate interviews were conducted through a cloud-based video conference service The interviewees were asked to share stories of lung cancer patient experience in their country, observations on key areas of improvement, and comments on how the global lung cancer community can support them Results: The interviewees comprised of two female lung cancer patients from the Netherlands and New Zealand, and a male lung cancer advocate from Nigeria Interview 1: Experience from The Netherlands: The insights of the patient advocate from the Netherlands were mostly very positive She described her experience of free access to healthcare, timely and free access to treatment, optimal level of nursing care, and integrated psychosocial services While there remains is a need to address stigma systematically and collaboratively, the interviewee observes that lung cancer care in the Netherlands may be held as a model for healthcare Interview 2: Experience from New Zealand: The anecdotes shared by the patient advocate from New Zealand somewhat differ While access to healthcare is free, most lung cancer patients are treated by general oncologists The patient advocate’s key area of concern is the limited access to biomarker testing, treatment options and clinicals trials She calls on the global lung cancer community to raise awareness about the lack of treatment options in New Zealand Interview 3: Experience from Nigeria: The third interview was with a former caregiver and advocate from Nigeria provided anecdotes and observations that were drastically different from the others Tragically, because healthcare costs are not subsidized and can be prohibitive, many people do not get diagnosed at all If diagnosed, a lung cancer patient would attend a general cancer clinic to see a general oncologist Treatment options are very limited as there is currently no access to any lung cancer biomarker testing, targeted therapy or immunotherapy There are currently no lung cancer clinical trials in Nigeria The interviewee descr bed feelings of sadness and despair when watching presentations on global lung cancer research and medical advancements He believes that the first step to tackle the dire position of lung cancer patients in Nigeria and Africa is to understand the current standard of lung cancer care in these respective areas He calls on the global community to provide support in that regard Conclusion: Lung cancer patient experience is not only multidimensional but also diverse The key insights drawn from the interviews are that, to ensure a comprehensive lung cancer patient experience, it is crucial that: (a) lung cancer advocates are aware and mindful of social determinants as well as issues that can significantly impact on patient outcomes, including inequity, accessibility, resourcing and poverty;(b) lung cancer researchers, clinicians and policy makers actively address disparities by engaging with a wide variety of patients and caregivers in their work;and (c) the lung cancer global community is sensitive to the impact of accelerating medical advancements on the widening gap of global health inequities, and ensure that all communication is appropriately respectful The reduction of inequities is a moral obligation [4] It may be difficult to comprehend in the year of the dawn of COVID-19, but it is time for us to advance beyond just tackling diseases It is our collective ethical responsibility to consider the whole patient experience in all aspects of lung cancer care, and to do so through the lenses of health inequities As the World Health Organisation states “[r]educing health inequities is… an ethical imperative Social injustice is killing people on a grand scale ” [5] Acknowledgements: My gratitude to Caleb Egwuenu, Lily Huang and Merel Hennink for generously sharing their time and experience which significantly contributed to this presentation References: [1] Wolf, Jason A The future of patient experience: Five thoughts on where we must go from here Patient Experience Journal 2019;6(3):1 [2] Cancer Australia National Cancer Control Indicators 2019 [3] United Nations Sustainable development goals 10: Reduced inequalities [4] World Health Organisation Closing the gap in a generation: Health equity through action on the social determinants of Health WHO Press 2008 [5] Ibid, at p 40 Keywords: Health inequities, Integrated patient experience, Access to care and treatment
ES16.06 Insights in Global Lung Cancer Patient Experience