The Department of Health has published its information strategy to help support delivery of the National Service Framework (NSF) for renal services. Local Service Providers (LSPs) and the National Application Service Provider providing the Data Spine project will have a central role to play in ensuring the success of the strategy. 

The new information strategy focuses on supporting the Renal Services NSF to deliver improved renal care, collecting and making available national comparative for audit, and providing nationally available data to support planning and identify local priorities.  

The strategy is set out as a lengthy series of national and related local actions required to support implementation of part 1 of the Renal Services NSF, which addresses kidney transplantation and dialysis for people with established renal failure.  Most of the local and national actions are closely tied to successful implementation of the early phases of the National Programme for IT (NPfIT).

Divided into four sections the information strategy first focuses on information required for the direct care of the patient; then data required for national purposes such as audit and service planning.  The final two sections relate to access to knowledge for healthcare professionals providing renal services and training and development requirements.

The national and local actions outlined for Information to support direct care of patients is heavily based on the systems to be delivered by the National Programme for IT, “in particular the plans for a national spine record”. 

It states that under the National Care Records Service (NCRS) programme local Cluster Management Boards will instruct each LSP to implement the Renal NSF Core Service.

The implementation steps each LSP will have to carry out to meet the core service requirement for renal services are listed as:

  • To maintain and upgrade as required electronic clinical information systems (ECIS) hardware and software, e.g. Proton etc. in use in trusts with renal services for children, young people and adults

  • To deploy ECIS in any trusts with renal services that do not have them

  • To send donor and recipient data to UK Transplant for organ allocation and transplantation

  • To deploy the renal national dataset (scheduled to be available by April 2005), working as required with the renal software package vendors to modify their packages to support the new dataset and deploy any such upgrades

  • To deploy an extract programme to send data to UK Transplant and the UK Renal Registry for the National Dataset

  • To deploy a set of renal messages based on the National Dataset to populate the national Spine Record.

Trusts providing renal services are encouraged to work with the LSPs under the National Care Records Service programme.  “…ultimately the success of the NCRS will be determined at local level through participation by trusts in the development and implementation process with the LSP,” states the strategy

The NSF information strategy goes on to state that phase 2 of the NCRS spine record, will support a National Renal Dataset.  A National Dataset for dialysis and transplantation services (including a database of donors and those waiting for a transplant) will be developed during phase 2 of the NPfIT.

By 2004 the Department of Health says it begin development of a care plan to support all people with chronic renal failure in managing their condition as an interim solution in advance of its inclusion within the NCRS

In addition, trusts with renal services are “encouraged to examine the issues surrounding the sharing of information” and to “use the results to ensure that the interests of patients, donors and care professionals are recognised and properly safeguarded.”  Trusts are also ‘encouraged’ to provide care professionals with decision support at the point of care.

Additional requirements include providing far better information to patients, including be able to check their position in waiting for a transplant. The document states that patients should be “…able to see their registration to receive a transplant on the transplant list and check their status.”

The document states: “Pending the likely provision of this function by My HealthSpace [the patient accessible electronic record project being tested by NHS Direct Online], the Department of Health will work with UK Transplant and other possible partners, such as NHS Direct Online, to make arrangements for a nationally agreed mechanism to enable patients to see their registration to receive a transplant on the transplant list and to check their status as to whether they are active or suspended.”

On the training front the strategy document states that the National Health Informatics Development (NHID) programme of the NHS Information Authority “will lead on the development of a renal informatics special interest group and a series of educational packages in the use of systems and for career development in support of staff within the renal community.”

Full details of the strategy available at: