Name:
A call to action: Antiracist patient engagement in adolescent and young adult oncology research and advocacy
Description:
A call to action: Antiracist patient engagement in adolescent and young adult oncology research and advocacy
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T00H05M42S
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Upload Date:
2021-08-03T00:00:00.0000000
Transcript:
Language: EN.
Segment:0 .
[MUSIC PLAYING]
DR CHRISTABEL CHEUNG: My name is Dr Christabel Cheung. I'm an Assistant Professor at the University of Maryland School of Social Work and a member of the University of Maryland Greenebaum Comprehensive Cancer Center. It's my great pleasure to present our manuscript entitled, "A Call to Action: Antiracist Patient Engagement in Adolescent and Young Adult Oncology Research and Advocacy." Amidst concurrent global crises of COVID-19, uprisings against anti-Black racism, and police brutality, as well as anti-Asian racism and violence, the field of medicine found itself simultaneously called upon to respond as both essential workers in the public health devastation of COVID-19 and as representatives of health care institutions wrought with the impacts of systemic racism.
DR CHRISTABEL CHEUNG: As clinicians, researchers and advocates in adolescent and young adult oncology, we come together in authentic activism to begin the work of creating structural change, to advance antiracist approaches to patient engagement in AYA oncology research and advocacy. Critical review of existing practices is needed to ensure that ethical and effective research methods are employed
DR CHRISTABEL CHEUNG: when engaging with racial and ethnic minority AYA cancer patients who may be particularly vulnerable and exploited in our current context. To guide our review, we utilized the Patient Centered Outcomes Research Institute's gold standard for patient engagement that is detailed by its PCORI framework for patient engagement and related core principles.
DR REGINALD TUCKER-SEELEY: The PCORI framework identifies six core principles of patient engagement. Chief among them when working with racial and ethnic minority AYA cancer patients include transparency, honesty and trust. After being lied to, experimented on and marginalized by the health care system for Black, Indigenous and other People of Color entering the cancer care delivery system, all aspects of a truly genuine patient engagement must start with transparency, honesty and being trustworthy.
DR MEGAN GILMAN: Notable strength in AYA patient engagement include the utilization of internet based social support, such as social media networks and the employment of cancer patients as embodied researchers. These efforts have helped ensure research is relevant to the stakeholders most impacted.
DR REGINALD TUCKER-SEELEY: To begin, researchers must first identify potential racial and ethnic disparities in their area of study. Genuine patient engagement in topic selection and research prioritization requires involving patients early in strategic planning and at the highest level in health systems, ensuring patient empowerment and influence in research agendas.
SIMON DAVIES: When designing and conducting research, educating AYA patient advocates allows them to make meaningful contributions. Key when working with Black, Indigenous and AYAs of color is responsiveness to the impacts of racial and ethnic discrimination and patient development, and providing full disclosure regarding the costs and benefits of engaging in oncology research and advocacy.
DR KIMBERLY A MILLER: To disseminate and implement results to communities who will most benefit, the employment of BIPOC embodied researchers and increased investment in resources to connect with those considered hard to reach is of particular import.
THULI KATERERE-VIRIMA: COVID-19 has shown us that the evaluation events and conferences, which were previously time and cost prohibitive for oncology AYAs, can be conducted virtually, making access far more equitable. We've also learned that the US health care system has the capability to quickly restructure itself, which holds great promise for urgently dismantling racism and in supporting in antiracist policies.
DR MARK A LEWIS: To summarize, our review was centered on a shared value for genuine engagement, with adolescent and young adult patient advocates across the research process, as opposed to token engagement. In doing so, we will generate scientific evidence that responds to the highest priority issues of relevance to racial and ethnic minority AYAs following a diagnosis of cancer. We are optimistic that the inter-professional community of AYA oncology can sustain positive progress on anti-racist approaches to patient engagement.
DR MARK A LEWIS: This can be done by working together in authentic activism to erect durable structures that encourage, support and incentivize genuine efforts. Future research should investigate the perspectives of racial and ethnic minority adolescent and young adult cancer patients themselves, and receive their direct responses to the recommendations proposed in our current discussion among AYA oncology professionals.
DR MARK A LEWIS: Thank you. [MUSIC PLAYING]
