Minimum Digital Needs of Households Undertaking Kidney Care
Research type
Research Study
Full title
Establishing the minimum digital needs and extent of digital exclusion for households living with a rare kidney disease in the UK.
IRAS ID
359427
Contact name
Simeon Yates
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 0 months, 11 days
Research summary
Around 10% of people in England are living with chronic kidney disease (CKD), yet it remains largely under-recognised. CKD progresses to kidney failure which requires kidney replacement therapy or a kidney transplant to sustain life. Rare kidney diseases account for 5-10% of CKD, and they currently constitute 25% of patients receiving kidney replacement therapy. Rare diseases mostly have an onset in childhood but can present in any age. The National Registry of Rare Kidney Diseases (RaDaR), consisting of >30,000 patients, demonstrated that children with a rare kidney disease (RKD) are more likely to live in lower socioeconomic regions. Improving the future for this population relies on accelerating research which is the overall aim of a newly established LifeArc-Kidney Research UK Centre for Rare Kidney Diseases.
As part of LifeArc, we will explore the digital needs of households for patients living with RKD and how they currently use digital technologies to communicate with healthcare providers. Previous work has developed the Minimum Digital Living Standard (MDLS) to measure the digital goods, skills, and services needed by UK households for an adequate quality of life and active participation in society and demonstrated inequitable access to meet the MDLS. Using the MDLS, we will use mixed method approach to identify whether households living with a RKD diagnosis meet this threshold and if there are additional digital needs associated with long term health conditions plus identify any barriers to their use of digital technologies to inform solutions.
REC name
East of England - Cambridge South Research Ethics Committee
REC reference
26/EE/0097
Date of REC Opinion
21 May 2026
REC opinion
Further Information Favourable Opinion