The power of information: Putting all of us in control of the health and care information we need (Department of Health)

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1 Policy backdrop to the Quality Outcomes workstream Over recent years there have been increasing calls for greater collection of health outcomes data and wider use of such data. The establishment of the fledgling registries at this time is likely to have been influenced in part by this culture emphasising the value of such data. This paper provides a brief background on this, looking at eight relevant policy developments revalidation, the Department of Health s Power of information report, the Caldicott report (2012), the Francis inquiry, the NHS 5 year forward view, transparency of outcome data, the care.data initiative, and the Competition and Markets Authority review of private healthcare. Revalidation Revalidation for doctors began in GMC guidance on revalidation explains one of the elements required of doctors: For the purposes of revalidation, you will have to demonstrate that you regularly participate in activities that review and evaluate the quality of your work. 1 Participation in clinical audit is identified as one of the main ways in which to fulfil this requirement, through following a process of actively participating in the audit, evaluating and reflecting on the results, taking action and subsequently demonstrating the outcome. Several of the orthopaedic fledgling registry and audit leads have commented that revalidation was one of the drivers that lead to them establishing their projects. The power of information: Putting all of us in control of the health and care information we need (Department of Health) This report described that Better quality information and sharing information is critical to modernising the NHS and care services. Its conclusions included: Alongside the Government s core role, a wide range of organisations will be encouraged to take a broader role in making information accessible and usable for people. More information will be publicly available about care at clinical or professional team level and information that enables [patients] to benchmark services, such as clinical audit data. An information-led culture where all health and care professionals and local bodies whose policies influence our health, such as local councils take responsibility for recording, sharing and using information to improve our care. 1 General Medical Council (2012) Supporting information for appraisal and revalidation 2

2 Caldicott report 2012 The first Caldicott report of 1997 on information governance was followed by a second in The first report defined six principles of information governance which were subsequently subsumed into the NHS confidentiality code of practice: 1. Justify the purpose(s) 2. Don't use patient identifiable information unless it is necessary 3. Use the minimum necessary patient-identifiable information 4. Access to patient identifiable information should be on a strict need-to-know basis 5. Everyone with access to patient identifiable information should be aware of their responsibilities 6. Understand and comply with the law It also recommended that a senior person, preferably a health professional, should be nominated in each health organisation to act as a guardian, responsible for safeguarding the confidentiality of patient information, a position termed the Caldicott Guardian. The second report is described as an independent review of information sharing to ensure that there is an appropriate balance between the protection of patient information and the use and sharing of information to improve patient care. 3 It builds on the first report; making some modifications to the existing six principles and adding a seventh: The duty to share information can be as important as the duty to protect patient confidentiality. The report explains Health and social care professionals should have the confidence to share information in the best interests of their patients within the framework set out by these principles. They should be supported by the policies of their employers, regulators and professional bodies. The second report deals with information governance aspects of a range of issues, such as data linkage, informing patients and the public of how their information is used in health and social care, handling any data security breaches, etc. It has specific mentions of audit at the local level, across organisations and at national level. One conclusion is that aggregate audit data should be made publicly available. Francis report (2013) 4 The Francis report that resulted from the Mid Staffordshire NHS Foundation Trust Public Inquiry made 290 recommendations, of which 13 relate to collecting, analysing and using data (these 13 are provided for information at Appendix A at the end of the paper). One section focused on these issues reads: There is an urgent need in many areas for measures to be developed to allow the effectiveness of a service to be understood. In some areas, such as cardiac surgery, this is better developed than in others. It should be considered the duty of all specialty professional bodies to develop measures of outcome in relation to their work. While this will be 3 Information: to share or not to share. The Information Governance Review. (2012) nance_accv2.pdf 4

3 more difficult in some areas than others, it should be possible in all. It should no longer be acceptable for treatment to be offered to patients without information being available on how effective it is and what it is reasonable to expect as an outcome. The rate at which such outcomes are in fact achieved by units and individuals can then be better understood, and, where necessary, corrective measures taken. The more such information is available to the staff providing treatment, the more likely is a culture of striving for evidence-based excellence to be adopted. (Para ) NHS 5 year forward view (October 2014) This is a recently published document with wide-ranging plans and goals set out, but collecting of data and using it for improvement is a recurring theme: We have a double opportunity: to narrow the gap between the best and the worst, whilst raising the bar higher for everyone. To reduce variations in where patients receive care, we will measure and publish meaningful and comparable measurements for all major pathways of care for every provider including community, mental and primary care by the end of the next Parliament. [ ] As national bodies we can do more by measuring what matters, requiring comprehensive transparency of performance data and ensuring this data increasingly informs payment mechanisms and commissioning decisions. The document advises that a National Information Board has been established, and one of its roles will be Comprehensive transparency of performance data including the results of treatment and what patients and carers say to help health professionals see how they are performing compared to others and improve; to help patients make informed choices; and to help CCGs and NHS England commission the best quality care. The National Information Board will be publishing its strategy and workplan for consultation imminently, which should provide more information on their direction. Transparency and publication of outcome data Both the Francis report and the NHS England 5 year forward view raise the subject of publication of data. This is an area in which national policy has already impacted the T&O specialty as part of the Consultant Outcome Publication (COP) initiative. The background on COP is that in December 2012, the NHS Commissioning Board (now NHS England) issued planning guidance for 2013/14 entitled 'Everyone counts' 5 and a major area of focus was offering the public more information about quality of care. One pledge was 'Publication of consultant-level outcome data covering mortality and quality for ten surgical and medical specialties.' The BOA had not been consulted prior to the publication of this document, but T&O had been identified as one of the specialties for this initiative. Hip and knee replacement procedures were the specific focus, mortality was the compulsory outcome measure that had to be included (contributing others was optional), and data was required to be published at both unit and consultant level by the autumn of The BOA, along with BASK and the BHS, took a significant role in delivering the initiative, alongside the National Joint Registry. A letter outlining the position of the BOA, BASK and BHS in 2013 is available online for further background

4 For the 2014 round of the initiative, the NHS England requirement was to expand the number of procedures featured and so this year joint replacement for ankle, shoulder and elbow have been added. The published information is available on and from 2014 some of this is also made available on NHS Choices. It is likely that in future there will be a requirement for further outcome data to be published, covering more procedures and more indicators. The BOA is aiming to anticipate such requests, by liaising through the Board of Specialist Societies about where to focus next for widening the initiative for publication of outcomes, and this has been the subject of discussion in several recent meetings. The BOA s position on outcome publication is that we support publication at the unit level but believe the value of publication at the surgeon level to be more questionable (although data at the surgeon level should certainly be collected and available for him or her to review and to identify potential outliers, for example). This position is shared by the Federation of Surgical Specialty Associations (FSSA), and we continue to pursue this. As such we would welcome a move from NHS England away from consultant-level publication, although this appears to be unlikely to change in the short term. Care.data The Government s care.data initiative has seen considerable controversy during 2014, and the implementation approach and timescale has been altered, but the general background to the initiative is as follows: The purpose of care.data is to support a range of uses of data beyond direct care. These uses will support the overall provision of care in terms of services and research into treatments and will benefit both the general population as well as the individual patient. The intention is to link primary care data with Hospital Episode Statistics data, which would be expanded to cover a wider remit, provisionally under the name CES Care Episode Statistics. Private healthcare data and PHIN The Competition and Markets Authority (formerly the Competition Commission) has announced new requirements for various private healthcare. The following is an extract from the Final order from the Competition and Markets Authority (the Information organisation to which this document refers is almost certainly going to be PHIN, the Private Healthcare Information Network 7 ): Every operator of a private healthcare facility shall supply the information organisation, quarterly from a date no later than 1 September 2016, with information as regards every patient episode of all private patients treated at that facility, and data which is sufficiently detailed and complete to enable the information organisation to publish the following types of performance measures by procedure at both hospital and consultant level: Volumes of procedures undertaken Average lengths of stay for each procedure Infection rates (with separate figures for surgical-acquired and facility-acquired infections) 7

5 Readmission rates Revision surgery rates Mortality rates Unplanned patient transfers A measure of patient feedback and satisfaction Relevant information, as agreed by the information organisation and its members and, where available, from the clinical registries and audits. Procedure-specific measures of improvement in health outcomes Frequency of adverse events The Order separately confirms that the publication may be approached in stages, but all information should be published no later than 30 April We understand from separate communications with PHIN that the procedure-specific measures of improvement will be for certain procedures that are likely to include several orthopaedic ones. The BOA and relevant specialist societies have been approached by PHIN about this. It is worth noting that our understanding is that the above relates to data only on private patients in private settings, and not NHS patients in private settings, although how this will occur in practice is not yet known. Policy outside of England This document has primarily focused and reported on policy developments relevant to England, where there has been the largest focus on the data and audit. In Scotland, in 2010, the publication of the The Healthcare Quality Strategy for NHSScotland 8 introduced a suite of 12 national Quality Outcome Measures or Indicators, including patient outcome measures and patient experience measures, that would be monitored. The latest information on this is that the indicators will be reported via a new web portal, which is being developed currently. 9 In Wales, the Together for Health 10 suite of documents from 2011 include plans for: Each NHS body to set out clearly defined outcome data that will be monitored and published A national approach to measuring health service user experience Developing a method of showing how health and services in Wales compare with a group of similar regions and countries They report that in Wales NHS bodies will be relentlessly concerned about high quality and enthusiastic participants in national and international audits. Conclusion

6 Over the past three years there have been various policy moves that actively seek more information to be collected and used, and for more information to be made publicly available, when appropriately aggregated and analysed. It is valuable for the BOA, specialist societies and audit/registry leads to be aware of these developments to provide the backdrop to the current project and consider what opportunities and challenges this presents.

7 Appendix A: Relevant recommendations from the Francis report (2012) Recommendation 25 It should be considered the duty of all specialty professional bodies, ideally together with the National Institute for Health and Clinical Excellence, to develop measures of outcome in relation to their work and to assist in the development of measures of standards compliance. Recommendation 244 There is a need for all to accept common information practices, and to feed performance information into shared databases for monitoring purposes. The following principles should be applied in considering the introduction of electronic patient information systems: - Systems should, where practicable and proportionate, be capable of collecting performance management and audit information automatically, appropriately anonymised direct from entries, to avoid unnecessary duplication of input. [ ] Recommendation 262 All healthcare provider organisations, in conjunction with their healthcare professionals, should develop and maintain systems which give them: - Effective real-time information on the performance of each of their services against patient safety and minimum quality standards; - Effective real-time information of the performance of each of their consultants and specialist teams in relation to mortality, morbidity, outcome and patient satisfaction. In doing so, they should have regard, in relation to each service, to best practice for information management of that service as evidenced by recommendations of the Information Centre, and recommendations of specialist organisations such as the medical Royal Colleges. The information derived from such systems should, to the extent practicable, be published and in any event made available in full to commissioners and regulators, on request, and with appropriate explanation, and to the extent that is relevant to individual patients, to assist in choice of treatment. Recommendation 263 It must be recognised to be the professional duty of all healthcare professionals to collaborate in the provision of information required for such statistics on the efficacy of treatment in specialties. Recommendation 264 In the case of each specialty, a programme of development for statistics on the efficacy of treatment should be prepared, published, and subjected to regular review. Recommendation 265 The Department of Health, the Information Centre and the Care Quality Commission should engage with each representative specialty organisation in order to consider how best to develop comparative statistics on the efficacy of treatment in that specialty, for publication and use in performance oversight, revalidation, and the promotion of patient knowledge and choice. Recommendation 266 In designing the methodology for such statistics and their presentation, the Department of Health, the Information Centre, the Care Quality Commission and the specialty organisations should seek and have regard to the views of patient groups and the public about the information needed by them.

8 Recommendation 267 All such statistics should be made available online and accessible through provider websites, as well as other gateways such as the Care Quality Commission. Recommendation 268 Resources must be allocated to and by provider organisations to enable the relevant data to be collected and forwarded to the relevant central registry. Recommendation 269 The only practical way of ensuring reasonable accuracy is vigilant auditing at local level of the data put into the system. This is important work, which must be continued and where possible improved. Recommendation 270 There is a need for a review by the Department of Health, the Information Centre and the UK Statistics Authority of the patient outcome statistics, including hospital mortality and other outcome indicators. In particular, there could be benefit from consideration of the extent to which these statistics can be published in a form more readily useable by the public. Recommendation 271 To the extent that summary hospital-level mortality indicators are not already recognised as national or official statistics, the Department of Health and the Health and Social Care Information Centre should work towards establishing such status for them or any successor hospital mortality figures, and other patient outcome statistics, including reports showing providerlevel detail. Recommendation 272 There is a demonstrable need for an accreditation system to be available for healthcare-relevant statistical methodologies. The power to create an accreditation scheme has been included in the Health and Social Care Act 2012, it should be used as soon as practicable.