2024
DOI: 10.21037/mhealth-23-18
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Walk a mile in my shoes: perspectives towards sharing of health and experience data among individuals living with sickle cell disorder

Simon Leigh,
Rebecca Baines,
Sebastian Stevens
et al.

Abstract: Background Advancements in digital health technologies (DHTs) mean people are increasingly recording and managing personal health data. As observed during the COVID-19 pandemic, sharing of such data may provide unrivalled opportunities in advancing our understanding of conditions otherwise poorly understood, including rare conditions. Methods A semi-structured focus group (n=25) explored perspectives and experiences of sharing health data among those with a group of rar… Show more

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