1. UK Renal Registry strategy for 2017 – 2019
Our aim: working in partnership with the renal community to improve patient care through audit, research and quality improvement programmes
Our vision: to be recognised as a world-leading, patient-centred, disease registry across a range of research methods.
Our work…
Audit
This is the corner stone of our work, collecting timely, high quality healthcare data, patient reported activation and experience measures and following the patient along their pathway.
Year 1
Develop new analyses and report on Acute Dialysis and Plasma Exchange. Explore a regular collection, analysis and reporting of patient activation/experience measures. Further expand the coverage of the AKI master patient index.
Year 2
Expand the coverage and reporting on Acute dialysis and Plasma Exchange patients. Establish a regular reporting process for national AKI. Develop a regular report for CKD5 patients.
Year 3
Establish a linkage of national AKI data to HES data. Expand the analysis and reporting CKD5 patients.
Research
We aim to use routine healthcare data and a broad range of research methods to improve outcomes for people with kidney disease through translational public health research.
Year 1
Establish process for rapid analysis & write-up; obtain funding for Renal Registry trials; obtain funding for clinical/health economics/qualitative doctoral and post doctoral fellowships;
Year 2
Establish research links with primary care and pharmaco-epidemiology; support South Africa Renal Registry through funded workshop; develop a short course on registry methods
Year 3
Develop links with university partner; develop links with other leading renal registries; publish in high impact journals.
Improvement and Innovation
Think Kidneys programmes use our skills and professionals across the NHS to deliver on
AKI The NHS campaign to improve the care of people at risk of, or with, acute kidney injury. Ending March 2017, final resources are being completed and evaluation of the work. The public campaign continues into the autumn.
TP-CKD Transforming Participation in Chronic Kidney Disease - a unique programme to help people with CKD live their best life, using PAM/PROM and PREM.
KQuIP Kidney Quality Improvement Partnership Working to develop, support and share improvement in kidney services to improve people's health and add value. Building a resource hub to share improvement knowledge and raise awareness.
Donor View development on behalf of the West Midlands Strategic Clinical Network
Improvement and Innovation
Think Kidneys programmes use our skills and professionals expertise across the NHS to deliver on
AKI The NHS campaign to improve the care of people at risk of, or with, acute kidney injury. Ending March 2017, final evaluation of the work and resources being completed. The public campaign initiated in 2016 still continues.
TP-CKD Transforming Participation in Chronic Kidney Disease - a unique programme to help people with CKD live their best life, using PAM/PROM and PREM.
KQuIP Kidney Quality Improvement Partnership Working to develop, support and share improvement in kidney services to improve people's health and add value. Building a resource hub to share improvement knowledge and raise awareness.
Donor View development on behalf of the West Midlands Strategic Clinical Network
Clinical Informatics
Positioning the UKRR to receive, transfer and make data available in almost real-time is a key element of our strategy.
Year 1
Establish the UK Renal Data Collaboration (UKRDC) enabling pilot sites to submit data using this method. Establish an international RaDaR. Develop PV to display the patient activation/experience measures. Fully integrate the PV feed with the UKRDC. Improve the timeliness of the data collection. Installation of new software and hardware to improve backup and restore ability.
Year 2
Expand the UKRDC to more renal units and use the database for reporting purposes. Promote the use of RaDaR for other rare diseases and patient groups. Further improve the timeliness of the data collection. Develop simple dashboard for units to have access to their data.
Year 3
Develop tools to display dashboards for use by commissioners and renal units.
Supported and delivered by:
…our people, providing skills and expertise which build our reputation and underpin all that we do…
 Robust information governance  Sound financial management  Modern HR procedures  First class facilities and administration
We aim to attract and retain the best possible people so that our team can respond with flexibility and speed, work collaboratively with our stakeholders, other registries and partners, and share our experience and knowledge.

2. UK Renal Registry business plan for 2017 – audit and clinical informatics
Our aim: working in partnership with the renal community to improve patient care through audit, research and quality improvement programmes
Our vision: to be recognised as a world-leading, patient-centred, disease registry across a range of research methods.
Our work…
Acute Dialysis, Plasma Exchange
New analysis to be included in the annual report will be for patients receiving Acute Dialysis and Plasma Exchange for kidney disease in renal units. Reporting on the number, demographic characteristics, outcome and frequency of HD and Plasma Exchange will allow for improved commissioning and audit measures and a more complete picture of the patient pathway.
National AKI
The national AKI master patient index based on the national AKI laboratory algorithm will be expanded by contacting and assisting laboratories not currently reporting data to the UKRR. The AKI master patient index will be linked to HES/ONS (hospitalisation and deaths), acute dialysis and RRT patients to follow the patient through the transition to RRT.
Information Technology
UKRDC: Given the importance of more timely data and easy access to information for renal units and commissioning services, the UKRR is developing a system to feed data from renal systems on a regular, at least daily basis, into a central data warehouse. This would require:
Data extraction to the correct specification and format from pilot sites. The extraction routine will be expanded to system suppliers and renal units.
Prepare the warehouse to receive the data extraction from pilot sites.
Exposing the data in the warehouse to data queries and producing data in a format suited for validation.
Developing new and transferring current data validation routines for use in the data warehouse.
Backups: Successfully implement hardware and software to enable robust backups and restoration thereof.
RaDaR
An international version of RaDaR will be developed for a specific international rare disease group, whilst complying with legislation around data confidentiality, patient consent and ethics. The international version of RaDaR will be developed so that it can be readily extended and promoted to other international rare disease groups and studies.
Data collection
Improve the timeliness of the data collection by regular monitoring and escalation procedures.
To commence collection and validation of CKD patients known to renal services. The initial focus will be on validating CKD5 patients and establishing a master index for these patients. Expand the data validation routine to incorporate the most recent data specification.
PatientView (PV)
Display results on patient activation (PAM), outcome and symptoms in PV within 4 weeks from scanning. Fully integrating PV with the data warehouse by implementing a process for checking and flagging the successful flow of submitted PV files through the warehouse into PV.
Patient experience
Investigate the integration and a regular analysis and reporting process for the collection of CSPAM, PAM, PROM and PREM into the work of the UKRR. This will include regular feedback of scanned survey results to renal units with national and centre level reports.

3. UK Renal Registry business plan for 2017 – research
Our aim: working in partnership with the renal community to improve patient care through audit, research and quality improvement programmes
Our vision: to be recognised as a world-leading, patient-centred, disease registry across a range of research methods.
Our work…
Epidemiology
Novel data on acute kidney injury, pre-dialysis chronic kidney disease, acute dialysis, medication and patient reported outcomes will be linked to other existing population databases and analysed using the most appropriate statistical methods, to determine:
Where inequalities exist?
What treatments optimise outcomes for people with kidney disease according to observational data?
The trial questions and populations that will deliver optimal benefits to patients' quality of life?
Trials
The best way to overcome biases in observational research is to allocate people to treatments by random allocation. However, such trials are expensive to run unless the long term follow up of participants can be captured using routinely collected data. Embedding renal trials in the UK Renal Registry will allow:
Efficiencies in follow up of laboratory and patient outcomes
Long-term follow up beyond the end of the formal trial
Understanding the generalisability of trial results to the real world
Using real-time data capture to facilitate safety monitoring.
Health economics
Given the personal and economic impact of kidney disease, there are real opportunities to use the UK Renal Registry data to inform decisions about the optimal spending of scarce resources (for example money and time) on health care in order to improve the health and wellbeing of the population.
What is the cost-effectiveness of preventive programmes to reduce harm from acute kidney injury and chronic kidney disease?
What would be the impact of policy changes on the costs and effectiveness of renal services in the UK?
What is the best way to measure patient quality of life?
Global Health
The UK Renal Registry has a range of expertise in data collection, information governance and research methods and is keen to share these with other registries around the world and learn from others’ experiences.
External research
The UK Renal Registry data should be used to maximal effect for the benefit of patients. This means sharing data and supporting external researchers to use the Registry’s infrastructure to make their studies more attractive in competition for funding.
Training
Underpinning all of these programmes is a recognition of the importance of training the health service researchers of the future, including medical doctors, nurses, multi-disciplinary team members and health services researchers.

4. UK Renal Registry business plan for 2017-2019 – improvement and innovation
Our aim: working in partnership with the renal community to improve patient care through audit, research and quality improvement programmes
Our vision: to be recognised as a world-leading, patient-centred, disease registry across a range of research methods.
Our work…
Acute Kidney Injury (AKI)
The NHS campaign to improve the care of people at risk of, or with, acute kidney injury. Objectives based on achieved funding across 3 years.
Year 1
Maintain Master Patient Index
Maintain Website and resources
Complete outstanding work from national programme
Year 2
Linkage with other datasets
Year 3
Transforming Participation in CKD (TP-CKD)
A unique programme to help people with CKD live their best life. Aspirational activities for the remainder of the programme.
Year 1
Continue working with first 10 Trusts - use data from patient surveys and incorporate interventions
Commencement of Cohort 2
Annual PREM
Year 2
Continue work with Cohort 2 - use data from patient surveys and incorporate interventions
Produce full evaluation and transferability to other disease pathways
Year 3
Explore commissioning levers for PAM/PROM/PREM
Continue collecting data routinely
Kidney Quality Improvement Partnership (KQuIP)
KQuIP works to develop, support and share improvement in kidney services to improve people's health and add value. Objectives based on achieved funding across 3 years.
Year 1
Build a hub to share improvement knowledge - QI tools, QI education and QI case studies
Vascular access education project
Establish KQUIP Faculty and network support
Year 2
Roll out vascular access QI national project
Identify funding for home therapies national project and identify units/regions to take this on
Develop Faculty further
Year 3
Develop mentor scheme
Identify sustainable funding model
Continue to support regional support model
DonorView
Development of online portal for donors on behalf of the West Midlands Strategic Clinical Network. Objectives based on achieved funding across 1 year.
Year 1
Develop online portal for donors
Pilot test Donor View with West Midlands
Explore ways of rolling this out nationally

5. UK Renal Registry business plan for 2017 – supporting infrastructure
Our aim: working in partnership with the renal community to improve patient care through audit, research and quality improvement programmes
Our vision: to be recognised as a world-leading, patient-centred, disease registry across a range of research methods.
Our work…
Information Governance
Maintain section 251 approval for audit and QI
Achieve and maintain section 251 and ethics approval for Research
Complete initial ISO27001 audit with the aim of attaining the standard in 2018
Review and standardise data sharing agreements
Implement quality assurance process for all contracts
Develop and implement an audit of governance arrangements
Ensure all staff understand their IG roles and responsibilities
Complete the IG toolkit and its replacement achieving a satisfactory rating
Review all IG policies and procedures
Consolidate IG resources into a knowledge centre for staff
Finance
Review and update all standard finance operational procedures.
Review all finance policies and existing finance structures.
Review all finance Information Assets, conduct a risk assessment and report to the IG forum.
Continue to manage all aspects of budgeting, forecasting and business planning.
Review software options to facilitate finance administration.
Develop specialist finance expertise including accountancy skills and possibly mentoring the UOB with costing grant applications.
Review the Renal Registry’s charge out policies.
Restructure the management accounts to include rolling opening balances for improved financial control.
Human Resources
Review and update all policies
Review and update appraisal process
Manage Cezanne and maximise its use
Develop a UK Renal Registry Human Resources strategy
Develop knowledge of HR with the assistance of the HR expert and other organisations such as ACAS/CIPD.
Conduct a risk assessment of Health and Safety requirements for the UK Renal Registry.
Review all HR procedures
Facilities and admin
Draw up specification for current and future office space requirements
Check legal options for purchasing and leasing office space
Draw up business case for Registry’s trustees to identify the approach for facilities
Identify appropriate accommodation
Short term
Long term
Review the operational procedures for the CEO offices (not including finance, HR, IG)