Access to cancer clinical trials for racialised older adults: an equity-focused rapid scoping review protocol.

BACKGROUND: The intersection of race and older age compounds existing health disparities experienced by historically marginalised communities. Therefore, racialised older adults with cancer are more disadvantaged in their access to cancer clinical trials compared with age-matched counterparts. To determine what has already been published in this area, the rapid scoping review question are: what are the barriers, facilitators and potential solutions for enhancing access to cancer clinical trials among racialised older adults? METHODS: We will use a rapid scoping review methodology in which we follow the six-step framework of Arksey and O'Malley, including a systematic search of the literature with abstract and full-text screening to be conducted by two independent reviewers, data abstraction by one reviewer and verification by a second reviewer using an Excel data abstraction sheet. Articles focusing on persons aged 18 and over who identify as a racialised person with cancer, that describe therapies/therapeutic interventions/prevention/outcomes related to barriers, facilitators and solutions to enhancing access to and equity in cancer clinical trials will be eligible for inclusion in this rapid scoping review. ETHICS AND DISSEMINATION: All data will be extracted from published literature. Hence, ethical approval and patient informed consent are not required. The findings of the scoping review will be submitted for publication in a peer-reviewed journal and presentation at international conferences.

Precision Oncology in Canada: Converting Vision to Reality with Lessons from International Programs.

Canada's healthcare system, like others worldwide, is immersed in a process of evolution, attempting to adapt conventional frameworks of health technology assessment (HTA) and funding models to a new landscape of precision medicine in oncology. In particular, the need for real-world evidence in Canada is not matched by the necessary infrastructure and technologies required to integrate genomic and clinical data. Since healthcare systems in many developed nations face similar challenges, we adopted a solutions-based approach and conducted a search of worldwide programs in personalized medicine, with an emphasis on precision oncology. This search strategy included review articles published between 1 January 2016 and 1 March 2021 and hand-searches of their reference lists for relevant publications back to 1 December 2005. Thirty-nine initiatives across 37 countries in Europe, Australasia, Africa, and the Americas had the potential to lead to real-world data (RWD) on the clinical utility of oncology biomarkers. We highlight four initiatives with helpful lessons for Canada: Genomic Medicine France 2025, UNICANCER, the German Medical Informatics Initiative, and CANCER-ID. Among the 35 other programs evaluated, the main themes included the need for collaboration and systems to support data harmonization across multiple jurisdictions. In order to generate RWD in precision oncology that will prove acceptable to HTA bodies, Canada must take a national approach to biomarker strategy and unite all stakeholders at the highest level to overcome jurisdictional and technological barriers.

Toward equity-oriented cancer care: a Strategy for Patient-Oriented Research (SPOR) protocol to promote equitable access to lung cancer screening.

BACKGROUND: Screening for lung cancer with low dose CT can facilitate the detection of early-stage lung cancers that are amenable to treatment, reducing mortality related to lung cancer. Individuals are considered eligible for lung cancer screening if they meet specific high-risk criteria, such as age and smoking history. Population groups that are at highest risk of lung cancer, and therefore, the target of lung cancer screening interventions, are also the least likely to participate in lung cancer screening. This can lead to a widening of health inequities. Deliberate effort is needed to both reduce lung cancer risk (through upstream interventions that promote smoking cessation) as well as midstream interventions that promote equitable access to lung cancer screening. METHODS: This protocol paper describes an equity-informed patient-oriented research study. Our study aims to promote equitable access to lung cancer screening by partnering with patients to co-design an e-learning module for healthcare providers. The learning module will describe the social context of lung cancer risk and promote access to lung cancer screening by increasing equity at the point of care. We have applied the Generative Co-Design Framework for Healthcare Innovation and detail our study processes in three phases and six steps: Pre-design (establishing a study governance structure); Co-design (identifying research priorities, gathering and interpreting data, co-developing module content); and Post-design (pilot testing the module and developing an implementation plan). DISCUSSION: Patient engagement in research can promote the design and delivery of healthcare services that are accessible and acceptable to patients. This is particularly important for lung cancer screening as those at highest risk of developing lung cancer are also those who are least likely to participate in lung cancer screening. By detailing the steps of our participatory co-design journey, we are making visible the processes of our work so that they can be linked to future outcomes and related impact, and inform a wide range of patient co-led processes.

Lung cancer is the most commonly diagnosed cancer in Canada and is responsible for a quarter of all cancer-related deaths in the country. Screening for lung cancer using tools such as a CT scan can allow us to find lung cancers when they are still small and curable. People can receive a lung CT scan depending on how old they are and for how long they have smoked cigarettes. Certain groups of people, particularly those who have fewer resources such as time and money, and those who experience injustice because of who they are and how they look are less likely to participate in lung cancer screening. We can increase participation in lung cancer screening by educating healthcare providers on appropriate and timely ways to talk to patients about lung cancer screening. In this paper, we outline the steps of a patient-partnered study in which many different stakeholders such as patients, providers and policy-makers have come together with a goal to improve equity in access to lung cancer screening. We will do this by jointly creating an online learning module that will educate healthcare providers on how life experiences shape smoking behaviour and lung cancer risk. The module will also impart key skills on how to deliver care which is timely, appropriate and safe. Once the module is ready it will be freely available to all healthcare providers to support the fair and just delivery of lung cancer screening in the province of Ontario and elsewhere.

Equity-Mobilizing Partnerships in Community (EMPaCT): Co-Designing Patient Engagement to Promote Health Equity.

Equity-Mobilizing Partnerships in Community (EMPaCT) is a novel approach to patient engagement that centres diverse lived experiences and promotes equity-oriented and inclusive partnerships. As an independent community table, EMPaCT is made up primarily of patients/diverse members of community. Researchers and other decision makers come to this table with their projects to learn how to make their project more inclusive and equitable. In this paper, we detail how we used participatory co-design to define, build and grow EMPaCT as an innovative and scalable patient partnership model that promotes bottom-up action for health equity.

The Importance of Disease-Free Survival as a Clinical Trial Endpoint: A Qualitative Study Among Canadian Survivors of Lung Cancer.

BACKGROUND: In lung cancer trials, overall survival is a well-validated and widely used endpoint; yet, in the context of adjuvant or curative intent treatments, disease-free survival (DFS) may be a better indicator of transformative patient outcomes. Although use of DFS is growing, patient perceptions of its relevance have not been established. OBJECTIVE: We aimed to understand the importance of DFS as a trial endpoint, from the perspective of survivors of lung cancer. METHODS: Web-based qualitative interviews were conducted with Canadian survivors of stage Ib-IIIa lung cancer. Participants described their experiences of cancer diagnosis and treatment, including their treatment goals and priorities. Participants then provided their perspectives on DFS and overall survival, and how well each aligned with their treatment priorities. Thematic analysis was used to explore patterns in responses. RESULTS: Among the 18 participants (mean age, 64 years), 83% were female, most (89%) had received surgery, and 56% received chemotherapy. Most participants viewed DFS as an intrinsically meaningful treatment outcome, for reasons such as alignment with treatment goals, and the perception that DFS would help maintain a high quality of life. One individual was interested in DFS only as a potential surrogate for overall survival. Participants desired access to new treatments that improve DFS and emphasized this within the context of promoting patient agency in treatment decision making. CONCLUSIONS: These findings suggest DFS is a meaningful endpoint from the perspective of survivors of lung cancer; and may help inform decisions regarding regulatory approval and reimbursement of new treatments based on DFS data.

Building Equitable Patient Partnerships during the COVID-19 Pandemic: Challenges and Key Considerations for Research and Policy.

The unequal social and economic burden of the COVID-19 pandemic is evident in racialized and low-income communities across Canada. Importantly, social inequities have not been adequately addressed and current public policies are not reflective of the needs of diverse populations. Public participation in decision-making is crucial and there is, therefore, a pressing need to increase diversity of representation in patient partnerships in order to prevent the further exclusion of socially marginalized groups from research and policy making. Deliberate effort and affirmative action are needed to meaningfully engage and nurture diverse patient partnerships by broadening the scope of the patient community to include excluded or underrepresented individuals or groups. This will help us co-develop ways to enhance access and equity in healthcare and prevent the systematic reproduction of structural inequalities that have already been heightened by the COVID-19 pandemic.

'Nothing fit me': nationwide consultations with young women with breast cancer.

OBJECTIVE: There exists little research about the experience of breast cancer for young women in Canada. To address this gap, the Canadian Breast Cancer Network (CBCN) and the Ontario Breast Cancer Community Research Initiative undertook a research project to explore the information and support experiences, needs and recommendations of geographically diverse Canadian young women with breast cancer. SETTING AND PARTICIPANTS: We consulted with 65 young women in 10 focus groups held across Canada. All women had been diagnosed with breast cancer at, or before, 45 years of age. During the consultations the women were asked to discuss their information and support experiences and needs, as well as resource recommendations related to their diagnosis, treatment and survivorship. MAIN RESULTS: The overarching theme, 'Nothing Fit Me', revealed that accessed information, support and programmes/services did not 'fit' or match the women's age or life stage. When we asked for their recommendations the young women suggested that information and support match their age and life stage and that health-care providers create and implement several topical workshops concerning, for example, sexuality, lymphedema and reconstruction. CONCLUSION: The findings will be used by the CBCN as a general platform from which to conduct further research and/or action strategies. The CBCN will also implement the recommendations from this groundbreaking work as this network formulates a national strategy for young women with breast cancer.

A consultation with Canadian rural women with breast cancer.

OBJECTIVE: Relatively little research has been carried out on the health and supportive care needs of rural women living with breast cancer. In this study, results from a Canadian focus group study are used to highlight issues of importance to rural women. SETTING AND PARTICIPANTS: A total of 276 rural women with breast cancer divided into 17 focus groups participated in the study conducted across Canada. A standardized protocol for discussion was employed. Issues of access to information, support and services were discussed, with women describing their experiences in trying to find appropriate programmes and services. MAIN RESULTS: The major theme identified through analysis of qualitative data was 'becoming aware of and/or gaining access to health care information, support and services.' Other major themes included: (1) dealing with isolation; (2) having to travel; (3) feeling the financial burden and (4) coping with changing work. CONCLUSIONS: Rural women with breast cancer have supportive care challenges related to their circumstances. A series of recommendations were generated through the consultation process which are contributing to the development of a national strategy focusing on the development and extension of programmes for rural women with breast cancer. Although the research on the project was not to specified standards, and suffered from less attention than community capacity building and advocacy, it proved to be of worth and revealed potential benefits from collaborations between researchers and community organizations.