Incorporating Participant and Clinical Feedback into a Community-Based Participatory Research Study of Colorectal Cancer Among Alaska Native People

Nash, Sarah H.; Greenley, Rochelle; Dietz-Chavez, Daniela; Vindigni, Stephen M.; Harrison, Tabitha A.; Peters, Ulrike; Redwood, Diana

doi:10.1007/s10900-020-00796-x

Cited by 2 publications

(1 citation statement)

References 20 publications

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“…Furthermore, CRC rates among younger people (aged <50 years) were shown to be significantly higher among AN people compared to USW [ 7 ]. In response to these findings, researchers in the Alaska Tribal Health System initiated public health programmes and research studies to investigate both primary and secondary prevention of CRC [ 18–21 ]. In addition, in 2013, the Alaska Native Medical Center (ANMC) changed its guidelines to recommend screening starting at age 40 years, 10 years earlier than the national recommendation to begin screening at 50 years.…”

Section: Introductionmentioning

confidence: 99%

The Alaska Native Tumour Registry: fifty years of cancer surveillance data for Alaska Native people

Nash¹,

Zimpelman²,

Miller³

et al. 2021

International Journal of Circumpolar Health

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Like other Indigenous Circumpolar populations, Alaska Native (AN) people experience different patterns of cancer than their non-Indigenous counterparts. Every 5 years, the Alaska Native Tumour Registry releases a comprehensive report on cancer among AN people; this study provides 50 years of cancer surveillance data. Five-year annual-average age-adjusted incidence rates were calculated for time-periods ranging 1969–2018. AN data were compared with data for US whites (SEER 9). Mortality rates were calculated for 1994–2018 using data from the National Center for Health Statistics. During 2014–2018, there were 2,401 cases of invasive cancer among AN people. Among these, the most commonly diagnosed cancers were colorectal (405 cases, 17% of all cancers), lung and bronchus (373 cases, 16% of all cancers), and female breast (340 cases, 14% of all cancers). Lung cancer was the leading cause of cancer death, followed by colorectal and female breast cancers. These leading cancers are screenable, and preventable through lifestyle modifications including tobacco cessation, healthy eating and engaging in physical activity. These data provide important information to support cancer prevention and control among AN people. Cancer surveillance has been a valuable tool throughout the Circumpolar North to support reducing the burden of cancer among Indigenous populations. Abbreviations: ANAI: Alaska Native/American Indian; AN: Alaska Native; USW: U.S. White(s); ANMC: Alaska Native Medical Center; ANTR: Alaska Native Tumour Registry; IR: Incidence Rate; CI: Confidence Interval; RR: Rate Ratio; ICD-O-3: International Classification of Diseases for Oncology – Third Edition; SEER: Surveillance, Epidemiology and End Results.

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Section: Introductionmentioning

confidence: 99%

The Alaska Native Tumour Registry: fifty years of cancer surveillance data for Alaska Native people

Nash¹,

Zimpelman²,

Miller³

et al. 2021

International Journal of Circumpolar Health

Self Cite

View full text Add to dashboard Cite

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Give and Take: Fostering Greater Participant-Centricity In A Digital Decentralized Trial Of Rare Disease Patients (Preprint)

Framroze¹,

Rinaldo²,

Lewis³

et al. 2023

Preprint

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UNSTRUCTURED Clinical research is becoming more participant-centric by closely involving patients in study conceptualization and design, and shifting the setting of research to the home and community by employing decentralized methodologies for data collection. Many studies now include digital and non-digital outcome measures that capture symptoms, daily functioning and health-related quality of life measures in ways that are meaningful to and interpretable by patients. However, study patients are rarely privy to the benefits and insights that clinical research yields. In particular, there are two barriers to providing patients with the benefits of participating in research: studies that produce data that are inaccessible to participants (“unidirectional” data), and studies that create results that are incomprehensible to participants (“unilingual” data). To be both effective and engaging for the participant, clinical research can no longer be one-sided. Decentralized clinical studies leverage technology to ease the burden of data collection on participants, allowing them to contribute their data remotely without having to travel to specific study sites. Our experience through a direct-to-participant, decentralized study with myasthenia gravis patients illustrates that a more equalizing and empowering approach to conducting patient-centric research brings multiple benefits (Trial Registration: ClinicalTrials.gov NCT04590716). These include an improved overall trial experience; increased adherence levels to study tasks and assessments; and an opportunity for participants to gain a greater understanding of their symptoms, such as recognizing trigger factors for disease exacerbations.

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Incorporating Participant and Clinical Feedback into a Community-Based Participatory Research Study of Colorectal Cancer Among Alaska Native People

Cited by 2 publications

References 20 publications

The Alaska Native Tumour Registry: fifty years of cancer surveillance data for Alaska Native people

The Alaska Native Tumour Registry: fifty years of cancer surveillance data for Alaska Native people

Give and Take: Fostering Greater Participant-Centricity In A Digital Decentralized Trial Of Rare Disease Patients (Preprint)

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