TY - JOUR
T1 - Analysis of population differences in digital conversations about cancer clinical trials
T2 - Advanced data mining and extraction study
AU - Perez, Edith A.
AU - Jaffee, Elizabeth M.
AU - Whyte, John
AU - Boyce, Cheryl A.
AU - Carpten, John D.
AU - Lozano, Guillermina
AU - Williams, Raymond M.
AU - Winkfield, Karen M.
AU - Bernstein, David
AU - Poblete, Sung
N1 - Funding Information:
Besides HCPs and enrollment concerns, we found treatment cost to be a disproportionate concern for African Americans and Hispanics. This correlates with current research on minority clinical trial barriers [32-34] and is a significant topic that needs to be addressed. Direct costs of treatment are often covered by insurance policies under the requirements of the Affordable Care Act; however, older grandfathered plans and Medicaid often do not cover National Cancer Institute–designated centers in the network [33,34]. In addition to treatment costs, indirect care costs such as travel and lodging for patients who reside far from the treatment center are also of great concern. Some studies have shown that financial assistance plans increased enrollment of low-income and rural patients with financial barriers related to lodging and travel and that this intervention decreased this specific patient concern throughout their treatment process [35]. The widespread use of financial assistance has been limited, however, because of ethical concerns regarding the coercion of financially burdened patients to participate. The American Society of Clinical Oncology has issued recommendations on clinical trials to include health policy changes, cost transparency, clear incentives that do not coerce, and improved cost data [32].
Publisher Copyright:
©Edith A Perez, Elizabeth M Jaffee, John Whyte, Cheryl A Boyce, John D Carpten, Guillermina Lozano, Raymond M Williams, Karen M Winkfield, David Bernstein, Sung Poblete.
PY - 2021/7
Y1 - 2021/7
N2 - Background: Racial and ethnic diversity in clinical trials for cancer treatment is essential for the development of treatments that are effective for all patients and for identifying potential differences in toxicity between different demographics. Mining of social media discussions about clinical trials has been used previously to identify patient barriers to enrollment in clinical trials; however, a comprehensive breakdown of sentiments and barriers by various racial and ethnic groups is lacking. Objective: The aim of this study is to use an innovative methodology to analyze web-based conversations about cancer clinical trials and to identify and compare conversation topics, barriers, and sentiments between different racial and ethnic populations. Methods: We analyzed 372,283 web-based conversations about cancer clinical trials, of which 179,339 (48.17%) of the discussions had identifiable race information about the individual posting the conversations. Using sophisticated machine learning software and analyses, we were able to identify key sentiments and feelings, topics of interest, and barriers to clinical trials across racial groups. The stage of treatment could also be identified in many of the discussions, allowing for a unique insight into how the sentiments and challenges of patients change throughout the treatment process for each racial group. Results: We observed that only 4.01% (372,283/9,284,284) of cancer-related discussions referenced clinical trials. Within these discussions, topics of interest and identified clinical trial barriers discussed by all racial and ethnic groups throughout the treatment process included health care professional interactions, cost of care, fear, anxiety and lack of awareness, risks, treatment experiences, and the clinical trial enrollment process. Health care professional interactions, cost of care, and enrollment processes were notably discussed more frequently in minority populations. Other minor variations in the frequency of discussion topics between ethnic and racial groups throughout the treatment process were identified. Conclusions: This study demonstrates the power of digital search technology in health care research. The results are also valuable for identifying the ideal content and timing for the delivery of clinical trial information and resources for different racial and ethnic groups.
AB - Background: Racial and ethnic diversity in clinical trials for cancer treatment is essential for the development of treatments that are effective for all patients and for identifying potential differences in toxicity between different demographics. Mining of social media discussions about clinical trials has been used previously to identify patient barriers to enrollment in clinical trials; however, a comprehensive breakdown of sentiments and barriers by various racial and ethnic groups is lacking. Objective: The aim of this study is to use an innovative methodology to analyze web-based conversations about cancer clinical trials and to identify and compare conversation topics, barriers, and sentiments between different racial and ethnic populations. Methods: We analyzed 372,283 web-based conversations about cancer clinical trials, of which 179,339 (48.17%) of the discussions had identifiable race information about the individual posting the conversations. Using sophisticated machine learning software and analyses, we were able to identify key sentiments and feelings, topics of interest, and barriers to clinical trials across racial groups. The stage of treatment could also be identified in many of the discussions, allowing for a unique insight into how the sentiments and challenges of patients change throughout the treatment process for each racial group. Results: We observed that only 4.01% (372,283/9,284,284) of cancer-related discussions referenced clinical trials. Within these discussions, topics of interest and identified clinical trial barriers discussed by all racial and ethnic groups throughout the treatment process included health care professional interactions, cost of care, fear, anxiety and lack of awareness, risks, treatment experiences, and the clinical trial enrollment process. Health care professional interactions, cost of care, and enrollment processes were notably discussed more frequently in minority populations. Other minor variations in the frequency of discussion topics between ethnic and racial groups throughout the treatment process were identified. Conclusions: This study demonstrates the power of digital search technology in health care research. The results are also valuable for identifying the ideal content and timing for the delivery of clinical trial information and resources for different racial and ethnic groups.
KW - Cancer
KW - Clinical trials
KW - Data mining
KW - Health care disparities
KW - Health communication
KW - Natural language processing
KW - Race and ethnicity
KW - Social media
KW - Text extraction
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U2 - 10.2196/25621
DO - 10.2196/25621
M3 - Article
C2 - 34554099
AN - SCOPUS:85116531098
SN - 2369-1999
VL - 7
JO - JMIR Cancer
JF - JMIR Cancer
IS - 3
M1 - e25621
ER -