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Which adult patients with kidney failure use Patient Knows Best? Understanding the demographic distribution of PKB users to support patient activation and education.
Safe People
Organisation name
UK Renal Registry
Applicant name(s)
Funders/ Sponsors
Safe Projects
Project ID
ILD141
Lay summary
Electronic personal health records (ePHRs) provide individuals with access to their personal health information, promoting self-management and improving care outcomes. The use of ePHRs has been associated with improved health outcomes for adult patients with chronic disease. Our aim in conducting this study is to examine the uptake and use of Patients Know Best (PKB) - a new national ePHR for adults with kidney failure - to determine whether inequalities in access exist by key demographic and/or disease variables, and if the ePHR platform may support digital interventions to improve home-based kidney care. We will look at adults (over 18 years) receiving long-term kidney replacement therapy at the end of 2022 in the UK. We will examine whether there are differences in the people who are registered and actively using of PKB vs people who are unregistered. We will look for differences in demographics (age of patient, sex, ethnicity, socioeconomic deprivation Index of Multiple Deprivation quintile) and clinical characteristics (primary kidney disease, KRT modality, median time since first nephrology review, centre). This will be the first step in tackling avoidable differences in access to the best kidney care. We intend to share the findings of this work widely, through patient groups, and the UK Kidney Association.
Other approval committees
Safe Data
Dataset(s) name