Amisha Kumar, MPH

She/Her/Hers
Clinical Researcher
Medicine
Endocrinology, Diabetes, and Hypertension
Impact of Language and Education on participant research attitudes and engagement in clinical research: The Type 1 Diabetes Bone Health Connection (T1D BEACON) Sub Study

Principal Investigator: Elaine Yu*, Vanita R. Aroda* (*co-senior authors)

Authors: Amisha Kumar, Ananya Murthy, Laura Cooke, Elaine Yu*, Vanita R. Aroda* (*co-senior authors)
Lay Abstract

Patient participation in clinical research is critical to advance the field of medicine. Prior studies indicate that 11% of study sites fail to recruit patients and 40% of participants do not understand what the study entails.[1] Traditional language in recruitment materials tend to focus on study logistics, which may not fully engage patients in the purpose of the research. We hypothesize that patient-centric language and use of health education materials during clinical research recruitment may positively impact research engagement and attitudes toward research. The T1D BEACON study is being implemented across MGH and BWH to evaluate factors affecting bone health in adults with type 1 diabetes (T1D), aiming to enroll 100 participants over two years. As a recruitment sub-study, we will compare impact of online recruitment materials utilizing traditional ‘study-centric’ language vs. ‘patient-centric’ educational language on research engagement. We will study the impact of receiving additional educational handouts vs standard study information letters alone on research attitudes using the validated Research Attitudes Questionnaire. [2] Effective engagement, recruitment, and completion of the BEACON study will not only advance our scientific understanding of bone health and treatment approaches in T1D, but also has significant implications for effective research engagement practices across MGB.

References:

  1. Tufts Center for the study of drug development http://CSSD.TUFTS.EDU/NEWS/COMPLETE_STORY/%20PR_IR_JAN-FEB_2013, Journal of Clinical Oncology http://jco.ascopubs.org
  2. Rubright, J. D., Cary, M. S., Karlawish, J. H., & Kim, S. Y. (2011, March). Measuring how people view biomedical research: Reliability and validity analysis of the Research Attitudes Questionnaire. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3253733/
Scientific Abstract

Patient participation in clinical research is critical to advance the field of medicine. Prior studies indicate that 11% of study sites fail to recruit patients and 40% of participants do not understand what the study entails.[1] Traditional language in recruitment materials tend to focus on study logistics, which may not fully engage patients in the purpose of the research. We hypothesize that patient-centric language and use of health education materials during clinical research recruitment may positively impact research engagement and attitudes toward research. The T1D BEACON study is being implemented across MGH and BWH to evaluate factors affecting bone health in adults with type 1 diabetes (T1D), aiming to enroll 100 participants over two years. As a recruitment sub-study, we will compare impact of online recruitment materials utilizing traditional ‘study-centric’ language vs. ‘patient-centric’ educational language on research engagement. We will study the impact of receiving additional educational handouts vs standard study information letters alone on research attitudes using the validated Research Attitudes Questionnaire. [2] Effective engagement, recruitment, and completion of the BEACON study will not only advance our scientific understanding of bone health and treatment approaches in T1D, but also has significant implications for effective research engagement practices across MGB.

References:

  1. Tufts Center for the study of drug development http://CSSD.TUFTS.EDU/NEWS/COMPLETE_STORY/%20PR_IR_JAN-FEB_2013, Journal of Clinical Oncology http://jco.ascopubs.org
  2. Rubright, J. D., Cary, M. S., Karlawish, J. H., & Kim, S. Y. (2011, March). Measuring how people view biomedical research: Reliability and validity analysis of the Research Attitudes Questionnaire. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3253733/
Clinical Implications
We hypothesize that patient-centric language and use of educational materials during clinical research recruitment may positively impact patient engagement and attitudes toward research. Understanding the impact of patient-centric approaches has the potential to increase patient engagement and enhance patient care.

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