Understanding the Knowledge, Perception, and Experiences of Patients about Precision Medicine and Biobanking; A Qualitative Study
Date
2022-02
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Abstract
Chronic Kidney Disease (CKD) patients’ knowledge, perception, and experiences surrounding Precision Medicine (PM) and biobanking were explored in this study. This study used a qualitative methodology. Data was collected by individual virtual interviews utilizing a semi-structured open-ended interview guide. Framework analysis was used on the resulting transcripts. Methodological rigor was achieved through credibility, reliability, and reflexivity. Four themes were identified concerning CKD patients’ knowledge, perception, and experiences of PM: benefits, concern, perceived barriers to implementing PM, and preferences on the informed consent model. Another four themes were identified regarding CKD patients’ knowledge, perception, and experiences of biobanking: benefits, concern about biobank research or donation of samples, factors that influence participation in biobank research, and ownership of donated samples. This unique study investigated the knowledge, perception, and experiences of CKD patients about PM and biobanking. The study results may help support programs and provisions that aim to overcome challenges that hinder a patient’s participation in PM and biobank research and consequently amplify patient engagement and awareness in PM and biobank research studies. In the end, the information gained from this study will add value to future PM and biobank research and clinical initiatives.
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Keywords
Precision Medicine, Biobanking, Qualitative Research, Knowledge, Perception, Chronic Kidney Disease, Experiences, Patient Engagement, Patient-Oriented Research
Citation
Haque, M. (2022). Understanding the knowledge, perception, and experiences of patients about precision medicine and biobanking; a qualitative study (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.