Specialist Palliative Care National Clinical Data Collection Pilot Presenter: Katie Lindsey. Public Health England
The vision...better data from specialist palliative care to: Support care delivery- adding value for those collecting data Inform commissioning and funding Support service improvement Provide richer picture of end of life care Reduce inequalities Support integration and innovation Build the evidence base Improving care for people and their families 2 SPC National Data Collection Pilot
Funding system - data requirements 2012-2014: Palliative Care Funding Pilots recommend health care currencies Currencies will be tested in 2015/2016 Possible implementation from 2016 Per-patient funding mechanism will require patient level collection including: diagnoses phase of illness functional status. 3 SPC National Data Collection Pilot
The opportunity Single, individual-level data collection from specialist palliative care to capture demographics, activity, outcomes and support a funding system By including a limited set of routine clinical data in the collection, we can: quantify people referred to/ receive specialist palliative care. monitor clinical outcomes, and use these to drive quality improvement. monitor care pathways and better understand the way services work together support development of better commissioning models. build an evidence base of what works. 4 SPC National Data Collection Pilot
Pilot Project- who is involved? Led by Public Health England and NHS England Extensive knowledge of end of life care and the sector Experience and expertise in establishing a similar data collection systems Partners Engaging with wide range of stakeholders 5 SPC National Data Collection Pilot
Principles for data collection Data that benefits ALL Build on existing data collection Start small Link to other data-sets. Use validated outcome measures Supported by national information standard Meaningful comparisons - case mix factor 6 SPC National Data Collection Pilot
Pal.Care NCPC Survey 2013 227 (of 413) services responded The challenge Healthy Software SystmOne Paper Other (not specified) Access/Excel Infoflex Sommerset CR Trust system (nonspecific) isoft SMI icare HCAS 85% have specialist systems RiO CANISAC Bespoke data-base Meditech 20% planning to change PRACTIS CMI Palcare PiMS Careflex 55% obtain patient consent HISS/MSS Maxims/paper Medway/Sigma OXPAS 6% do not store patient data. Patient Pathway Management MOSAIC Capstone 7 SPC National Data Collection Pilot
Possible support solutions For non-nhs providers with good IT systems work with suppliers to incorporate data-set and extract. For non-nhs providers without good IT systems: provide web-based data entry tool to enable the reporting For NHS providers (about 14%).looking at options to collect this data AIM To ensure that all specialist palliative care providers have access to systems that can record and report the data 8 SPC National Data Collection Pilot
P A T I E N T PHE Developed Clinical Data Entry Tool SPC Data set Example model of data flows SPC Data set Central Data Warehouse D A T A Commercial Clinical Systems SPC Data set Health and Social Care Information Centre Other data e.g. mortality/ hospital/ community/ prescribing. Publically available statistics Reporting tools Management information Note: options for collecting data from NHS hospitals will be explored SPC Data set Local Commissioners Payment to providers based on currencies 9 SPC National Data Collection Pilot
Consultation- your views matter So far. Key stakeholder consultation: clinicians, providers, commissioners, charities, academics: - Workshops - Meetings - Survey Planned. Formal public consultation- open to all Further engagement events with NHS England (Palliative Care Funding and Peer Review teams), Hospice UK, NCPC, NEoLCIN Patient/Public groups 10 SPC National Data Collection Pilot
Data set for pilot and consultation NHS Number Initial of Client s First Name Initial of Client s Surname Person Birth Date Person gender at registration Ethnicity Referral date Reason for referral Reason for referral 2 Reason for referral 3 GP practice code Care setting Spell start date Agency code Client reference Client ID Spell ID Consent Usual residence Living circumstance Preference Personalised Care Plan offered Primary end of life diagnosis Diagnosis 2 Diagnosis 3 Postcode Disability Casemix Spell end date Spell outcome Discharge destination Place of death Assessment ID Spell ID Assessment date Phase of Illness Duration of phase Functional status Pain Breathlessness Nausea Anxiety/Distress Information needs Views on Care Assessor Patient Spell Assessment 11 SPC National Data Collection Pilot
Where are we now? Draft data set agreed for testing & national consultation Application made for national information standard National joint statement published September Project Board established- chaired by NCD End of Life Care Next steps Promotion and consultation Continue to work closely with PCF team Recruit pilot sites and IT systems providers to test Consider information governance and legal framework Confirm feasibility, identify options and costs of national roll-out 12 SPC National Data Collection Pilot
Getting involved Let us know your thoughts and suggestions Respond to the national consultation about the data set Consider if you would like to be involved as a pilot for collecting the data set or be involved with the project 13 SPC National Data Collection Pilot
Find out more Joint statement from NHS England and Public Health England https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/358261/nhs_england_phe_data_collect ion_statement.pdf Contact Project lead Programme Manager malcolm.roxburgh@phe.gov.uk Katie.lindsey@phe.gov.uk We welcome your comments and please let us know if you would like to participate in our work to on data collection 14 SPC National Data Collection Pilot