This project aims to better understand clinical data management and information sharing along complex patient pathways, such as during kidney transplantation. Currently there is marked variation in practice across the UK with no standard referral pathway and largely paper-based processes. Information technology has the tremendous potential improve efficiency of care, workflow for healthcare professionals and patient experience, but implementation requires robust evaluation of the clinical context. By exploring how clinicians use IT systems and electronic health records we aim to establish an evidence-base, and inform the development of future meaningful digital transformation.
Clinical transplantation – exploring the KidneyCloud
The project is delivered across three phases:
1) Establishing the national landscape
We are undertaking a national survey of all 23 kidney transplant centres asking transplant coordinators how they manage clinical data and how IT systems support their work, but also what challenges they face. This will establish the national landscape and give an assessment of the digital maturity of renal transplant services in the UK
2) Model regional data journeys and information flow
We are undertaking data journey modelling across the North West regional transplant network to document in detail the data, systems, actors and organisations in current use. This will help understand the socio-technical challenges that need to be overcome to realise digital change in transplantation.
3) Propose a novel solution
Insights gained during the project will drive iterative development of a digital clinical data management solution that meets specific needs and requirements of clinical transplantation. No such solution exists and current EHRs do not support the complex, multi-speciality and cross-centre information management required along the transplant pathway. We have partnered with the Local Health and Care Record Exemplar (Greater Manchester Digital Platform), who will provide the technical intra-operability solution to allow us to build clinician interface. Developing an interoperable system that is user-centric, research-driven and problem-focussed has the potential to support clinical work and ultimately improve care delivery for kidney transplant patients.
The main intended outcome of this project is to develop a new IT solution. The unique advantage of this project is based on the exhaustive exploration of the problem area to ensure any proposed solution addresses the needs and requirements of the end-users. Specifically, the measurable intended outcomes will include:
1) shorten the time from referral to wait-listing
2) reduce the variation in waiting times across the regional transplant network
3) release time to care during individual clinic appointments. We anticipate this outcomes will directly benefit patients by improving access to transplantation and supporting the clinician-patient relationship.
START: April 2019
END: April 2022
Kidneys for Life (registered charity) , Data-Driven Healthcare Funding (MFT)
Service delivery documentation and clinical pathways including NICE and British Transplant Society/Renal Association guidelines. Qualitative data analysis of focus groups and/or interviews with healthcare professionals and administrative staff working in renal transplantation. Patient support groups (Kidney Patient Involvement Network) and public engagement (Public Programmes Team, MFT)
This project is designed to directly benefit patients by streamlining pathways, improving access to data and releasing clinical time to deliver direct care. The potential for digital health interventions to support complex clinical pathways is tremendous – however this has not been extensively explored in transplantation before. We hope to set an example in our regional transplant network, which may subsequently benefit other regions and the wider NHS.
Videha Sharma, who leads the project commented:
“The impact transplantation has on the lives of patients with kidney failure is immense, and it is a privilege to care for these patients. My hope for this project is that by understanding the needs and requirements of the multi-disciplinary transplant team as well as how patients experience the service we will be able to identify how technology may best support the practice. I am particularly excited about working with LHCRE and demonstrating how regional interoperability is essential to support clinical pathways across multiple NHS organisations. “
Sabine van der Veer