SCCI SUPPORTING. SCCI2036 Palliative Care Clinical Data Set. Implementation Strategy. Project: SCCI2036 Palliative Care Clinical Data Set

Transcription

1 Document filename: Project Manager SCCI2036 Implementation Strategy v0.3 Helen Bolton Project: SCCI2036 Palliative Care Clinical Data Set Owner Julia Verne Version 0.3 Author Malcolm Roxburgh Version issue date 30/06/2015 SCCI2036 Palliative Care Clinical Data Set Implementation Strategy

2 Amendment History: Version Date Amendment History First draft for comment /06/2015 Revisions following comments /06/2015 Minor revisions following internal HSCIC review - ensuring version numbering correct, date and version for SRO sign-off Reviewers: This document must be reviewed by the following: Name Title / Responsibility Date Version Katie Lindsey NEoLCIN Programme Manager 16/06/ Helen Bolton Palliative Care Data Project Manager 16/06/ Helen Bolton Palliative Care Data Project Manager 30/06/ Katie Lindsey NEoLCIN Programme Manager 30/06/ Approvals: This document must be approved by the following: Name Title / Responsibility Date Version Julia Verne SRO 26/06/ Document Control: The controlled copy of this document is held by the work area it covers. Any copies of this document held outside of that area, in whatever format (e.g. paper, attachment), are considered to have passed out of control and should be checked for currency and validity. Page 2 of 10

3 Contents 1 Introduction Purpose Overview of Current as is state Current Systems and Infrastructure Information Governance and N3/PDS Access Electronic Palliative Care Co-ordination Systems (EPaCCS) NCPC Minimum Data Set Summary of to be state Responsible Authority Data Flows Implementation Support Governance Processes for maintenance Implementation options and migration path Management approach for information governance and clinical safety issues.. 10 Page 3 of 10

4 1 Introduction 1.1 Purpose This strategy sets out the proposed approach to implementing the Palliative Care Clinical Data Set. The data-set is currently in piloting (during 2015/2016), with the outcome and findings of the pilot designed to facilitate the estimates of costs and timings required to roll-out the data capture to all providers of Specialist Palliative Care in England. At this stage, this document sets out thinking and options that will be considered based on pilot findings. 2 Overview of Current as is state. 2.1 Current Systems and Infrastructure Specialist palliative care is delivered by teams based in hospices and NHS acute hospitals. There are around 400 hospices in England, using a wide range of IT systems to record clinical information. Specialist palliative care services based in NHS hospitals also use a range of electronic and paper-based clinical record systems. Responses to the National Council for Palliative Care (NCPC) 2014 IT survey question which of these IT systems do you use? is shown in Fig 1. Fig 1 NCPC IT Survey % of respondents said they did not have a clinical IT system for recording patient information and 38% did not have a maintenance contract in place with their system supplier. Of those providers with a maintenance contract, around 66% reported that their contract covered costs of data field changes. Around 20% of respondents said that they intended to change their system in the next twelve months. 35 providers reported maintenance costs for their systems these are shown in (Fig 2). Page 4 of 10

5 Fig 2 Annual Maintenance Costs 2.2 Information Governance and N3/PDS Access In the 2014 NCPC survey, 77% of providers reported that they completed the NHS Information Governance Toolkit, 12% used an alternative system, and 12% did not use a system (n=190). 18% of providers responded that they did not have an N3 connection (n=166), and 37% said they could not access PDS lookup for NHS numbers (n=179). 62% responded that they asked for consent, with verbal consent the most prevalent (28%) 2.3 Electronic Palliative Care Co-ordination Systems (EPaCCS) There is an existing information standard, Palliative Care Co-ordination: core content (SCCI 1580) to support Electronic Palliative Care Co-ordination Systems (EPaCCS). These systems provide health and social care professionals with access to a shared record of people s wishes and preferences for palliative and end of life care and support patient choice, shared decision making, individual care planning and integration of care across sectors. This information standard, Palliative Care Coordination: core content - SCCI1580 is maintained by Public Health England. Currently 43% of clinical commissioning groups (CCGs) in England have an operational EPaCCS in place and an additional 25% have plans to introduce. It is expected that all EPaCCS provide access to specialist palliative care provider services. Care has been taken to ensure that this proposed standard and SCCI1580 are consistent, e.g. by sharing data items where possible. One of the barriers to a full implementation of EPaCCS has been that an estimated 50%+ of hospices do not currently have an N3 connection. Page 5 of 10

6 2.4 NCPC Minimum Data Set The Minimum Data Set (MDS) for Specialist Palliative Care Services is collected by NCPC on a yearly basis, with the aim to provide good quality, comprehensive data about hospice and specialist palliative care services on a continuing basis. It is the only annual data collection to cover patient activity in specialist services in the voluntary sector and the NHS in England, Wales and Northern Ireland. The MDS was developed in 1995 by NCPC and is currently commissioned by Public Health England and Hospice UK. The questions included in the MDS have been revised recently so that it remains as relevant and useful as possible. The MDS is a specification for aggregate activity reporting. It looks at a wide range of specialist palliative care issues, including inpatient activity, day care, community care, hospital support, bereavement support, outpatients, staffing, diagnoses and services for young people. Data is submitted annually to NCPC by around 65% of providers and an annual report is produced from this data. 3 Summary of to be state 3.1 Responsible Authority There is to be a single authority responsible for receiving a data-set compliant with SCCI2036 from all specialist palliative care services (n>500). During piloting this authority is to be Public Health England, but may change to the Health and Social Care Information Centre (HSCIC) for the full national collection. Progress and actions during piloting in 2015/2016 will provide NHS England with the basis on which to make this decision. These include: - Ensuring that there is a legal gateway in place to permit organisations to undertake a full national collection - Understanding the local and national costs associated with setting up and managing a national collection. - Determining the required timescales for setting up a collection in an organisation. NHS England should have a clear position on these before the standard is submitted for full approval. 3.2 Data Flows Fig 3 shows the data-flow that will form the basis for implementation planning, if the responsible authority for the full collection is Public Health England. Providers will be required to submit data at regular intervals, with the frequency of submission informed by the pilot findings. It is expected that the options for submissions are likely to be at 1 month, 3 months, 6 months or one year. Providers IT systems will be amended to comply with the standard during 2016/2017, and it is anticipated that most submissions will be through this route. Where providers do not have IT systems that can be amended to support the data standard, a web-based Data Entry Tool (DET) is being developed by Public Health Page 6 of 10

7 England and will be made available to support submission of data for those providers with inadequate IT capacity. Any communication of or about data containing patient identifiers outside the file submissions can be managed using a secure file transfer application. CyberArk is being used for the piloting. Regular, cleansed data-extracts are shared with the HSCIC. Data matching between this data and other health data (e.g. Hospital Episode Statistics (HES), Office for National Statistics (ONS) mortality files) will be required. The body responsible for this will be dependent on the ability to gain Information Governance (IG) approval from the relevant authorities in PHE and the HSCIC for managing this. Fig 3 To be data-flow with PHE as data controller. 3.3 Implementation Support For many palliative care providers there will be significant challenges in being ready to collect and submit a robust data-set by April The pilot will seek to estimate what support will be required to achieve this. The elements of support that will be quantified and costed by the pilot include: - Training for clinicians to support use of phase and functional status in clinical record keeping. - Training for clinicians to support use of ipos outcome measures in clinical record keeping. - Supplier costs that providers are likely to face. - Size, composition and cost of reporting function. Page 7 of 10

8 - Size and composition of a Programme Office to a. maintain all IG processes and documentation (e.g. data-sharing agreements) b. support IT supplier and local systems changes to support standard c. test extractions for conformity with standard. d. manage actions associated with maintenance of, and changes to, the Standard through SCCI. e. maintain and manage a Data Entry Tool (if required). Implementation Guidance will be developed, incorporating the learning and experiences from the pilot sites. This guidance will be published alongside the requirements specification for the information standard to support providers establishing a data collection and reporting system. A professional guidance and definitions document (Appendix E to the Requirements Specification) has been developed to support the pilot sites. This will be updated with information and learning from the pilot project and will be published as professional guidance to support the clinicians recording the data items in clinical record systems. 3.4 Governance Governance arrangements have been put in place for the development and testing of the data collection, and will be maintained in the national collection which is to be managed by PHE. A National Palliative Care Clinical Data Set Steering Group is chaired by the National Clinical Director for End of Life Care. The project is accountable to the Chief Knowledge Officer in Public Health England, to the Domain 2 Programme Board in NHS England and through the sponsor for the standard (Jane Allberry) in the Department of Health. Full details of the governance arrangements are provided in the SCCI2036 Requirements Specification. Page 8 of 10

9 Fig 3 The Expert Reference Group membership includes clinicians, professionals and people with experience and the Technical Reference Group membership includes representatives from the test sites. It is expected that similar governance arrangements will remain in place following approval of the information standard. The terms of reference and membership will be reviewed and updated to ensure that appropriate governance is in place. 3.5 Processes for maintenance As part of development of the information standard, procedures, approval and control requirements for maintaining the information standard will be specified. These will include processes for responding to queries arising from implementation, ensuring that the standard is kept up to date and fit for purpose and that the dataset items remain aligned to any changes in clinical practice or coding, and to policy requirements. 4 Implementation options and migration path As outlined above, the preferred option for the data collection element of this standard has not yet been confirmed as it will be informed from the pilot phase. This limits the ability to design a specific, detailed migration path at this stage. However, the following outline plan is proposed (indicative dates are given to assist in understanding of the proposed timeline, and are subject to change): 1. Communication and engagement with relevant NHS and voluntary sector providers, professional representative bodies and patient groups during autumn / winter 2013/14. Page 9 of 10

10 2. NHS England capital monies to support provider system readiness for commissioning the data set (Summer 2016). 3. PHE to seek use of legal gateway for patient data, probably through Confidentiality Advisory Group (CAG). (Autumn 2015). 4. NHS England to determine the requirements for further data set commissioning, and the managing body (late 2015). 5. Specification of information standard for final stage approval agreed by steering group. 6. HSCIC to test, and develop xml message.(jan-march 2016) 7. Full Stage Approval (April 2016) 8. Changes / upgrades are made to IT and administrative systems as necessary (2016/2017). 9. Providers that wish to use the web-based Data Entry Tool (DET) are registered and trained between October 2016 and March The anticipated deadline for compliance with the standard is April Management approach for information governance and clinical safety issues All outputs and processes associated with the standard including data management, quality and sharing will follow existing information governance frameworks, including the fundamental standard, ISB 1512 Information Governance Standards Framework. As the standard supports commissioning and secondary uses of data, there is no requirement for a clinical safety assessment during the pilot phase and prior to SCCI Need to Requirement acceptance. However, the pilot steering committee have appointed a clinical safety lead, who will review whether clinical safety issues may arise from changes to clinical record keeping, caused by the introduction of the standard. If this is considered a risk, a full patient safety assessment will be undertaken, and submitted with the documentation for final stage acceptance. Page 10 of 10