1. Relieving distress, transforming lives Data Collection in IAPT The IAPT data standard Margaret Oates IAPT National Programme Nick Bridges NHS Information Centre Version 3

2. Introduction 2 Background/update –Data collection Principles –Update as at September 2011 New processes for central data collection and reporting –The data standard –The central data repository –Data submission process Maintenance Inputs/ Outputs from the system –Work-in-progress Next steps &Timeline –Testing continuing. Submissions commence November 2011. Mandated from April 2012

3. Central Principles for data collection Data collection is an integral part of delivering IAPT services Use a combination of patient-centred interviewing and outcome measurement tools Effective communication with patients Patient involvement in decision making Provides tangible evidence of treatment progression Effective inter-professional communication Used by supervisors to review clinical work

4. Central Principles for data collection This primary use of data helps to Improve the quality of clinical interventions The IAPT toolkit first published in 2008 started to set out a common data set or clinical record IAPT data handbook provides guidance in data collection and the use of data Used by managers and commissioners to facilitate effective service performance Including monitoring monitoring equity of access and provision of NICE approved treatments

5. Update as at September 2011 Services continue to collect IAPT data set –KPIs via Omnibus, guidance for 2011/12 at http://www.iapt.nhs.ukhttp://www.iapt.nhs.uk –Q1 will be published for the first time on NHS Information Centre web site (precise location to be finalised) Information Standards Board (ISB) approval achieved in March 2011 –IAPT data set approved as an National Operational Standard in April 2011. Sets out how we will utilise IAPT data for secondary uses –Information Standard Notice (ISN) and IAPT Data Handbook issued –National Data Standard mandated from April 2012 –Development of the IAPT central data collection system in-progress Data Standard Implementation project set up, co-working with NHS IC –Overseeing development of National processing and reporting system –From April 2012 the way we collect and report IAPT data will change! 5

6. Focus of today The New IAPT data standard How it will be implemented in practice Changes to process and data flow Set expectations and provide a clear timeframe for development

7. 7 Information Standard What do we mean by ‘Information Standard’? – Output data standard – Data items/ permissible values – Mechanism for end-to-end processing Approval gained: – Information Standard Board (ISB) – Review of Central Returns – National information Governance Board

8. NIGB & Patient Identifiable Data Patient identifiable data will flow centrally, however reports will be aggregated and it will not be possible to identify a patient from the reports. S251 application approved meaning no need to seek explicit consent to use patient data. However, it is a legal responsibility to inform patients that their data will be used for secondary purposes, and for this reason the NIGB has asked us to provide patient’s with an explanatory leaflet and allow patients to ‘opt out’ from national reporting. The Programme has included an example leaflet in the new data handbook, this may be printed and distributed to patients. 8

9. Changes since the MDS/Clinical record? Additional items - Compliance with Equality Act, and - Policy development (e.g. veterans) Changes to existing items in line with - NHS Data Dictionary - Definitional testing Local flexibility to collect additional data items Formal change and testing processes - Future updates likely after April 2012 9

10. Development of the IAPT central data collection system Development of the IAPT central data collection system is near completion. Early system testing complete, currently conducting user testing. The system is expected to go-live on 7 November 2011 to receive October data. From this time services are encouraged to submit data extracts. This will help to test out processes and embed into practice in readiness for mandation in April 2012. It is important to emphasize that the provision of a patient-level reporting system will have significant impact on local information management practices 10

11. Change to process Every IAPT service will be expected to submit a full data extract to the central data collection system on a monthly basis. 2011/12 is a transition year when services can make arrangements to change local IT systems and put in place procedures to process data. 2012/13 reporting via the IC website with parallel running of KPIs until assured of data quality from the new system 11

12. How will the data standard support the IAPT Programme? Consistent framework for data collection and central reporting In-line with wider Information Strategy ‘Fundamental review of data returns’ The provision of a central reporting system will allow secondary reporting and help us to better commission and manage services. IAPT national reports will be published on the NHS IC web site to support monitoring against IAPT quality standards including; equity of access, patterns of interventions and outcomes Allow benchmarking and make information accessible and transparent in a way that allows patients and the public to compare the range of interventions and outcomes achieved across services Local data quality reports available to help improve data quality

13. Data Structure and Data Flow

14. The Data Set and Submission 50 data items (actually 53 as can have up to 4 therapy types) Data items grouped –Patient table –Disability table –Referral table –Appointment table Defined permissible values Defined validation rules which will lead to either warnings or failures Submitted as the IAPT Intermediate database (IDB) 14

15. 15

16. Data storage Patient identifiable data is submitted to the Bureau Service Portal. Its then –Processed –Held for a short period to allow local download –Deleted The Bureau Service Portal is not a data warehousing service

17. What data is held ? The Bureau Service Portal will retain only five extracts at any time: –the most recent primary and refresh submissions –the submissions from the previous fixed period –the primary submission from the period before that For example: –March primary ----- most recent submission –February refresh ----- most recent submission Plus –February primary –January refresh –January primary

18. Amendments since initial issue of ISN Removal of default W code from all outcome measures. No default code should exist for the outcome measures included. PHQ-9 – Alignment with PHQ-9 collection within MHMDS. Correction to ensure consistency of collection. Removal of attended or did not attend code ‘0 – Not applicable, appointment occurs in the future’. No requirement exists to connect future appointments. Generalized Anxiety Disorder Penn State Worry Questionnaire score range is incorrectly shown. Amended to cover the range 16-80. 18

19. Amendments since initial issue of ISN Renamed British Armed Forces Indicator to Ex-British Armed forces indicator Removed from Ex-British Armed forces indicator codes ‘01 – Yes, currently serving (including reservists)’ and ’04 - Dependant of current serving member’. Both removed as serving personnel are not seen by IAPT services. Addition of default codes: –Ethnic Category –Sexual Orientation –Org Code of Commissioner –Appointment Purpose –Employment Support Indicated 19

20. The intermediate database (IDB) 4 tables Microsoft Access format Defined structure which cannot be changed Support for all versions of Access since 2002 Must not remove tables or amend structure of IDB as will lead to a rejection 20

21. Collation of IDB Local data collection and validation Data extraction from local system(s) Format into required 4 table structure within an Access database, the IDB What data should be included ? 21

22. Construction of IDB Inclusion rules are: –Referrals either opened in the period or already open at the start of the period –Appointments linked to those referrals –Patients associated with those referrals –Disabilities associated with those patients It may be that not all referrals have appointments and not all patients have disabilities Rules are described in a separate document 22

23. 23

24. Submission Submitted via Bureau Service Portal, provided by Systems and Service Delivery Team of Connecting for Health Currently requires a N3 connection, but investigations are underway to determine if an alternative exists Requires organisation code provided by ODS service Requires username and password to access –Approval granted by local Caldicott Guardian –‘Application form’ available from Connecting for Health (link later) Monthly submission of primary and refresh submissions 24

25. Fixed period processing At any point in time the BSP will expect data sets to be submitted relating to a specific period of time. For instance April’s data set will expect to be submitted in May. If March’s data set was submitted in May it would be processed as if it was April’s data, something which clearly should be avoided. A window of time exists in which a submission can be made – if it’s missed no option exists for later submission 25

26. ‘Not for submission’ It may be that a situation arises whereby a data set needs to be run through the submission process for testing purposes. This is called a ‘not for submission’ submission. A user defined reporting period is able to be selected. The data set will not progress fully through the processing system and will not be used for national reporting. 26

27. Submission and processing timescales Using April 2012 as an example…. Window always opens on a Monday and closes on Friday. Open between 3 and 4 weeks, depending upon calendar for that month. Always closed for a week Data set available by the following Monday, the same day window reopens for next months submission Window opens Window closes Closed for processing Processed data set available 07/05/1225/05/12w/c 28/5/1204/06/12 27

28. Bureau Service Portal In development Plan is for portal to be in place from 7 November 2011 for voluntary submission Process will essentially be: –Login –Upload –Monitor –Retrieve data quality feedback and data downloads –Resubmit as required prior to window closing –Once window closes final data processing begins –Download processed data set for use locally by IAPT providers, commissioners and the NHS IC 28

29. Data quality reports Data quality reports will be supplied following submission The data set will be subject to a series of validations to test its integrity prior to it undergoing further processing Validations can lead either to –A warning –A failure A failure means the whole data set must be resubmitted A warning means the data should be amended, but processing can progress if it is not 29

30. Validations - Examples Warnings NHS number status indicator code is null when a NHS number is provided General medical practice code does not match a valid ODS code Failures Local patient ID is null in any of the 4 IDB tables Any date is not in valid format 30

31. Processing stages Pre deadline processing Various derivations which only utilise data present within the current periods submission, such as age at referral. Post deadline processing Various derivations which utilise data from one or more reporting period submissions, such as IAPT person ID (used to track patients across providers and submissions) and PHQ-9 first and last scores. 31

32. Example: Submission period is April April activity Pre deadline Post deadline April activityMarch activityFebruary activity Derivations such as age at start of reporting period, county, PCT of residence Derivations such as First and Last score patient health questionnaire scores, First and Last social phobia inventory scores, Count of number of pure self help sessions 32

33. Retrieving data sets A user must login to the portal to retrieve a data set after it is processed An email notification is sent to registered users once data set processing is complete Whilst the submission window is open a ‘pre deadline’ data set is made available following each submission. This allows for instance data quality checking. Made available only to providers. Once the submission window closes ‘post deadline’ data set is made available. This is the final data set used for reporting purposes. Made available to providers, commissioners and NHS IC. 33

34. Who receives data sets? Pseudonymised data set (non identifiable) Patient identifiable data set IAPT commissioners NHS Information Centre IAPT providers IAPT providers only receive data related to the patients they have treated IAPT commissioners only receive data related to the patients for whom they have commissioned a service The NHS Information Centre receives data for all patients seen by all providers 34

35. Maintenance and future changes

36. Maintenance and possible new items All changes will be overseen by the IAPT Outcomes and Informatics Board Protected characteristics detailed in the 2010 Equalities Act 2010 i.e Marriage/civil partnership, Gender reassignment, Pregnancy, maternity Inclusion of scores to describe the results from a Patient Experience Questionnaire. Revision to 'Sexual Orientation' data item value list. Code ’02 – Homosexual’ to be renamed to ’02 - Gay/Lesbian’. Items to Support Payment by Results 36

37. Future Reporting

38. The Information Centre is commissioned to produce national reports Initially will be limited to data quality reports From April 2012 more extensive reporting against IAPT quality standards Standard reports currently being defined Parallel running of the new system and KPI’s throughout 2012 38

39. Next Steps and Timeline

40. Next steps Disseminate literature and guidance Check with local system suppliers Ensure resource in place to process/validate data Request the Intermediate Database Apply for access to the Bureau Service Portal ‘State of Readiness’ checklist 40

41. Planned timescale 41 DateEvent End September / early October Issue of revised ISN and Standard Specification document OctoberComplete system testing 7 NovemberPortal go-live November – MarchServices submit data on a voluntary basis November – MarchServices use data extracts and diagnostic reports to improve data quality April 2012Data submission mandated From April 2012Parallel running of both KPI and data set reporting systems From April 2012National reports will start to be published on the IC website From April 2012Establish user network

42. Further information To obtain the Intermediate database (IDB) email enquiries@ic.nhs.uk Register your interest to receive further information on the data set at http://www.ic.nhs.uk/iapt Email queries to iapt@ic.nhs.uk 42

43. Further information Bureau Service Portal access application forms http://www.connectingforhealth.nhs.uk/systemsan dservices/ssd/prodserv/vaprodopenexe 1 – ‘Download the Caldicott Guardian Certificate’ Then at least one week later 2 – ‘Download the Bureau Service Portal Data User Certificate’ Information Standards Board – IAPT Specification document http://www.isb.nhs.uk/documents/isb-1520/amd-51-2010/index_html 43

44. Questions, queries, uncertainties ?