Individual-Level Data Collection From Specialist Palliative Care

Individual-Level Data Collection From Specialist Palliative Care

Individual-level data collection from specialist palliative care About Public Health England Public Health England exists to protect and improve the nation's health and wellbeing, and reduce health inequalities. It does this through world-class science, knowledge and intelligence, advocacy, partnerships and the delivery of specialist public health services. PHE is an operationally autonomous executive agency of the Department of Health. Public Health England Wellington House 133-155 Waterloo Road London SE1 8UG Tel: 020 7654 8000 www.gov.uk/phe Twitter: @PHE_uk Facebook: www.facebook.com/publichealthengland Prepared by: The National End of Life Care Intelligence Network For queries relating to this document, please contact: neolcin@phe.gov.uk Crown copyright 2015 You may re-use this information (excluding logos) free of charge in any format or medium, under the terms of the Open Government Licence v3.0. To view this licence, visit OGL or email psi@nationalarchives.gsi.gov.uk. Where we have identified any third party copyright information you will need to obtain permission from the copyright holders concerned. Published March 2015 PHE publications gateway number: 2014767 2

Contents About Public Health England 2 Introduction 4 Why a new national data collection? 4 Purpose of the data collection 5 Information standards 6 Why outcomes? 6 Case mix adjustment 7 What has been done already 7 Links with the NHS England Currency Testing Programme 8 Links with the OACC Initiative 9 Links with the End of Life Care Co-ordination information standard 9 Next steps 9 The data items 10 Consent 12 Use of the data 12 Complete the consultation survey 12 3

Introduction Public Health England is consulting on a proposal to introduce a new national collection of data from specialist palliative care. When completing the online consultation survey, the following information may be useful. The closing date for the survey is Friday 27 March 2015. Why a new national data collection? Data and information underpins health and social care and is crucial to professionals, planners, commissioners, researchers and policy makers to: support delivery of quality and cost-effective services improve services for people at the end of their lives and their families End of life care is provided across sectors including the voluntary and private sectors, social care, primary and community care. Estimates indicate that around 171,000 people currently receive specialist palliative care and that around 92,000 people per year have unmet palliative needs. There is a recognition in the specialist palliative care sector that data needs to be more robust and comprehensive. Although providers may be recording and using palliative care patient data, there is no current mechanism for bringing activity data together across sectors to provide a full picture of the care provided to patients. We therefore, have significant gaps in our understanding of end of life care provision and a lack of clarity about what is good end of life care. What is known is that there are around 400 organisations providing specialist palliative care for adults in England, the large majority of which are not in the NHS sector. The National Council for Palliative Care (NCPC) has been collecting aggregated data from specialist palliative care providers since 1996 via an annual survey. This has provided some insight into services provided in this sector but this is limited. We also do not have accurate information on the proportion of people who are dying who have access to specialist palliative care or patterns of care across hospital and community services. We do not know the impact and outcomes of the care provided nor are we able to compare the costs of different models of care. 4

PHE and NHS England, together with our partners, are working towards development of a new national data collection from hospices and specialist palliative care services. We will consult with stakeholders and the public, test collection of a dataset and assess the benefits, feasibility, costs and options for a national data collection to inform the decision on whether this will be rolled out nationally. The proposed data collection will include demographic details, activity information and patient outcomes data. This data will also support the requirements of a palliative care currency. Our vision is for a single dataset, that will be part of routine clinical data collection and capture activity and outcomes. Our goal is to minimise the burden of data collection by identifying the key data that will be the most useful by incorporating data held in routine clinical and care records wherever possible. We see that improved data will have the potential to make a real positive difference to end of life care, providing clear information on the amount of palliative care activity, filling the gaps in available data and making it possible to link with other national datasets to provide a more complete picture of care and to measure the impact of care delivery. Purpose of the data collection The purposes of the data collection will be to: improve care for individual patients and their families through reporting of patient centred outcomes ultimately, inform patient choice and better support patient preferences support integrated team working and better implementation of local, regional and national audit and quality improvement initiatives provide a more complete national picture of palliative and end of life care provision enable comparisons across services and benchmarking (with appropriate case-mix adjustment) facilitate more effective commissioning of palliative care services and support new funding models demonstrate effectiveness and cost-effectiveness of care underpin and inform future research 5

Information standards An information standard describes a way of managing information to improve data quality and allows consistent recording of data to support better use of information. Universally applied information standards are important to the delivery of care, especially where information is to be shared. They can support innovation, improve outcomes, comparability and efficiency. Confidentiality, security and clinical safety must be paramount when using information systems. Standards are key to enabling the use of data, information and technology in health and social care for patients. Standards bring consistency to the information used to make decisions about health and social care provision as well as facilitating interoperability between IT systems. In turn, this brings greater transparency and opportunities for patient and citizen participation in the health and social care system. To ensure that standards are developed and implemented effectively, efficiently and with a high degree of rigour, they must go through an approval process. This process is governed by the Standardisation Committee for Care Information (SCCI), which is a sub-group of the National Information Board (NIB). Empowered by the Health and Social Care Act 2012, SCCI has delegated responsibility for approving information standards for the health and social care system in England. Why outcomes? The vision is to collect data that clinicians need to provide and improve care for patients and their families. In end of life and palliative care we lack a measurable way to capture quality of care. We believe that by capturing patient outcomes we will start to address this. We will build the evidence base and provide a means for services to demonstrate their value. For a national data collection it is essential that we collect robust data in a consistent format to allow meaningful comparison. We have reviewed options for validated outcome measures that we could incorporate into the dataset and have consulted on these. The criteria for suitable outcome measures: valid measuring what is intended reliable behaves in an expected way 6

sensitive to change will demonstrate relevant change in an ill palliative population clinically applicable for patients and professionals brief and not too burdensome We propose to use the following to measure outcomes: phase of illness as used in the Palliative Care Funding Pilots functional status as used in Palliative Care Funding Pilots some items from IPOS 1 (pain, breathlessness, anxiety, at peace, information needs) Views on Care question from SKIPP 2 on whether care has made a difference Note: IPOS and SKIPP are validated tools for measuring outcomes in palliative care. Case mix adjustment In order to use data for monitoring and benchmarking, it is essential that account is taken of variation in case mix, for example the different types of patients seen by a service. We plan to build in the learning from the palliative care funding pilots to use case mix to analyse the data. This will be further tested with the pilots. What has been done already In September 2014, PHE and NHS England published a joint statement to set out plans for improving palliative care data. PHE is working closely with NHS England, the Health and Social Care Information Centre (HSCIC), the National Council for Palliative Care, Hospice UK and the Cicely Saunders Institute to develop this data collection. A national steering group was established in 2014 to explore the feasibility, options and costs of developing a new national data collection. This group includes representation from PHE, NHS England, HSCIC and Monitor and is chaired by the national clinical director for end of life care. 1 IPOS: Integrated Palliative Care Outcome Scale 2 SKIPP: St Christopher s Index of Patient Priorities 7

An expert reference group has also been established to support development of a data collection that is fit for purpose. This group has representation from lay members, statutory and voluntary sector and includes the Association for Palliative Medicine of Great Britain and Ireland, the National Palliative Care Nurse Consultant Group, the Royal College of Physicians, the National Council for Palliative Care, Hospices UK, Cicely Saunders Institute, Marie Curie Cancer Care and Macmillan Cancer Support. Consultation has been carried out to date with experts in specialist palliative care in England and in the US and Australia. Ten regional events have been held across England to inform about the plans and to invite feedback. The first stage application for development of a mandated national information standard to support the data collection was submitted to the SCCI last autumn and a justified need for this requirement was notified in December 2014. The development of the proposed data collection is being informed by the experiences and learning of other projects and data collections including the Palliative Care Funding pilots, the annual Minimum Dataset survey carried out by NCPC since 1996 that collects aggregated data from specialist palliative care providers, a pilot of individual-level data collection carried out by NCPC and NEoLCIN in 2009-10 and the Palliative Care Outcomes Collaboration in Australia. Links with the NHS England Currency Testing Programme As well as supporting the objectives included within the joint statement, the dataset has also been developed to support the data-requirements of the draft palliative care currencies. It is anticipated that once the standard is approved, the dataset will be embedded within routine record keeping systems in all specialist palliative care provider services, and this mechanism will be used to provide the data required to support a roll out of these currencies in 2017. This alignment means that there will be a single data collection for outcomes and currencies, thereby minimising the data burden for provider services. Further information is available on NHS England website. 8

Links with the OACC Initiative The Outcome Assessment and Complexity Collaborative (OACC) initiative, led by the Cicely Saunders Institute at King s College London and in partnership with Hospice UK, is seeking to support the implementation of outcome measures into routine palliative care. The OACC work is aligned with the proposed national data collection and sites which choose to implement all the OACC measures will collect all the data variables required for the national data collection. We recognise that outcomes cannot be implemented effectively without training of staff in the collection and use of the outcome measures, and without feedback of outcomes into practice, to improve care and to help support data quality. PHE is looking to link with the OACC initiative, so that training and other resources will be available to pilot sites. Links with the End of Life Care Co-ordination information standard There is currently an information standard (ISB1580) for electronic palliative care coordination systems (EPaCCS). This standard supports communication between providers (such as out of hours and ambulance services) of key information and end of life care preferences and choices so that more people are supported to die in the place of their choosing and with their preferred care package. While the standard is not aimed at facilitating central data collection at this time, alignment of the definitions between a national dataset and EPaCCS would greatly reduce the cost and complexity of implementation of the dataset on EPaCCS compliant systems. The proposed data items have been mapped against this standard and aligned where appropriate. Next steps PHE will recruit around ten pilot sites across England to work with the national team to progress plans for a national data collection. We aim to recruit to the pilot project providers who show a range of IT capability and service configuration and with a geographical spread. 9

Specialist palliative care providers have been invited to express an interest in becoming a pilot site. The pilots will run from April 2015 to March 2016. We will work with pilot sites to determine whether the proposed dataset is feasible and useful to collect. The objectives of the piloting address the following questions: can the dataset be embedded within routine clinical record keeping? what additional burden does collection of the dataset place on provider services? what are the likely costs of a roll out of the data collection to all provider services? can existing record keeping systems be configured to record and submit the dataset to a central body? If not, can an alternative mechanism be found that will enable this from all providers? what are the education/training requirements for ensuring consistency of data collection? can a case-mix adjusted model be developed that will provide meaningful comparison of the quality and effectiveness of clinical care? are there other measures of quality and effectiveness that could or should be included in a national data collection? can a national data collection adequately support the introduction of a new palliative care funding system? identify any unintended consequences from collection of the data We will work with SCCI to develop an information standard to support a collection. As part of the SCCI process, we will be required to submit evidence that the data collection is feasible, is fit for purpose and represents value for money. The data items The data collection is based on spells of care 3 and phases of illness 4 as defined for the Palliative Care Funding Pilots. This aligns with the Palliative Care Funding currencies being developed by NHS England. 3 A spell of care is defined as each period of contact between a patient and a palliative care service provider or team of providers that occurs in one setting 4 Within each spell of care a patient may have numerous different phases of care, the phase is driven by the clinically assessed phase of the patient s condition. One phase ends and another begins when a clinical decision is made that the patient has moved between one of the four phases of illness Stable, Unstable, Deteriorating, Dying. 10

The proposed data items are: Patient data (likely to stay the same across spells) NHS number Initial of first name Initial of surname Person birth date Person gender Ethnicity Spell data (To be collected at start of spell) Referral date Referral reasons GP practice code Care setting: inpatient/community/outpatient Ready to start date Spell start date Consent: Y/N/lacks capacity Postcode Usual residence Lives alone? Preferred place of death Personalised care plan EoL diagnoses Disability Spell end date Spell outcome Discharge destination Place of death Follow-up outcomes (to be collected at each phase change) Assessment date Phase of Illness Date phase change Functional status Pain Breathlessness Anxiety/distress At peace Information needs Views on care Impact on carer Assessor 11

Local areas may decide to extend the outcome data items depending on their own circumstances. Please view the full document of the data items. Consent For the pilot data collection, people will be required to give consent for their information to be used for secondary purposes. The pilots will also capture information about people with capacity who refuse consent and people who do not have capacity to consent. This information will inform the future consent model for national data collection and influence whether we apply for legal permission to collect data from patients who are unable to provide consent. Use of the data Data collected will be used by professionals caring for the person as part of the person s clinical record. It will also be useful to service providers to better understand their service provision and how it compares to others. Complete the consultation survey In order to help shape the information standard, PHEis undertaking a consultation to seek views of those who have an interest in end of life care. We want to ensure that the information standard supports the health and social care professionals that deliver end of life care and that it helps to improve services for people and their families. We are urging all involved in end of life care to contribute to the proposed national information standard by completing the short survey below, indicating your views on the information standard and the data content that should be included. The survey will close on Friday 27 March 2015. If you have any queries about the survey or the information standard, please email neolcin@phe.gov.uk. 12