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
Research
Improvement and Innovation
Clinical Informatics
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.
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.
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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
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.
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.
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.
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.
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.
Information Technology
RaDaR
UKRDC: Given the importance of more
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.
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.
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.
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
Trials
Health economics
Global Health
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?
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.
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?
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, multidisciplinary team members and health
services researchers.
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)
Transforming Participation in CKD
(TP-CKD)
Kidney Quality Improvement
Partnership (KQuIP)
DonorView
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
• Maintain Master Patient Index
• Linkage with other datasets
• Maintain Website and
resources
Year 3
• Maintain Master Patient Index
• Linkage with other datasets
• Maintain Website and
resources
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
• Annual PREM
• Produce full evaluation and
transferability to other disease
pathways
Year 3
• Annual PREM
• Explore commissioning levers for
PAM/PROM/PREM
• Continue collecting data routinely
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
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
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
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•
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
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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
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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
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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)