IAPT Data Standard Frequently Asked Questions Version 1.0 March 2012 IAPT FAQs 1.0-1 -
Contents Section 1: About the IAPT Data Standard.. 3 Section 2: Who is responsible for doing what?. 5 Section 3: How the IT works.7 Section 4: Patients. 9 Section 5: Data items...11 Section 6: Glossary of terms.. 14 IAPT FAQs 1.0-2 -
Section 1: About the Data Standard 1. Q: Why do we need an IAPT Data Standard? A: Information underpins the IAPT programme. Patients need information to make decisions about their treatment, clinicians need it for safe delivery of treatment and to monitor change, managers need it for planning, evaluation and service improvement. The IAPT Data Standard describes a common set of data items that all IAPT services are required to capture. It provides a mechanism for central data return and processing. It gives us a consistent framework for evaluation and performance monitoring against IAPT quality standards and facilitates standardised national reporting. 2. Q: Who has approved the Data Standard? A: The IAPT Data Standard has been approved by the Information Standards Board for Health and Social Care (ISB), the National Information Governance Board (NIGB) and Review of Central Returns (RoCR). The ISB is the national body responsible for appraising and approving all information standards for use in the NHS and social care, ensuring they are fit for purpose and secure. It is a representative body bringing together expertise from a cross-section of organisations. The NIGB is an independent statutory body established to promote, improve and monitor information governance in health and social care, so helping to ensure patient confidentiality. It is concerned with the ethical use of patient information and provides advice on the appropriate use, sharing and protection of patient information. The RoCR process is concerned with the Government s policy to reduce the burden of data collections in the NHS. They ensure collections align with ministerial priorities, avoids duplication and can be can be returned with the least burden to patient services. 3. Q: How will the data help my service? A: Following each submission a provider and commissioner data set can be downloaded from the Bureau Service Portal. This contains all the activity recorded in the reporting period including some derived data items, such as first and last PHQ-9 scores. Service providers are able to retrieve a patient identifiable data set showing details of all patients referred to the service. This is in addition to reports produced locally by local IT administrators. Commissioners are able to retrieve a pseudonymised data set showing the patients for whom they have commissioned a service. This will be useful for local analysis and reporting against locally agreed key performance indicators. Details of these can be found at http://www.ic.nhs.uk/iapt The NHS Information Centre (IC) will receive a national pseudonymised data set. This data set will be used to develop data quality reports, IAPT programme KPI s and further indepth analysis. These reports will be accessible via the IC website. An annual report will also be made available. IAPT FAQs 1.0-3 -
4. Q: How will changes to the Data Standard be managed? A: The IAPT Outcomes and Informatics Board will oversee the change request process. Membership includes representation from Clinicians, IAPT Service Providers, Department of Health, NHS Information Centre, Information Governance and a Service User organisation. A change request log will be maintained centrally, the Board will review change requests at 6 monthly intervals. Any changes agreed by the Board will be taken through the ISB appraisal process. This process will include wider consultation and field testing. Changes to the IAPT minimum data set can be requested via http://www.ic.nhs.uk/iapt IAPT FAQs 1.0-4 -
Section 2: Who is responsible for doing what? 5. Q: What information should be returned? A: The Information Standards Notice (ISN) together with the IAPT specification document give details of all the required data items along with their descriptions. Both documents can be downloaded from: http://www.isb.nhs.uk/documents/isb-1520/amd-29-2011/index_html Three additional documents have been prepared to advise you on how and when to submit data. The IAPT User Guide provides further detail on preparing data for submission. Inclusion rules are also available and describe what data should be included in each monthly submission. Also, the schedule for central data return throughout 2012/13 has now been published. These documents can be downloaded from: http://www.ic.nhs.uk/iapt 6. Q: How often do we need to submit data to the central reporting system? A: Data should be submitted on a monthly basis. A submission schedule can be downloaded from http://www.ic.nhs.uk/iapt 7. Q: Can services collect additional data that is not included in the Data Standard? A: Yes. The Data Standard is an output data set, it represents the minimum data required to be returned centrally for secondary uses. Locally, you may need to collect additional data to support local practice. Where this is the case, you should discuss your needs with your IT staff in the first instance. 8. Q: When do services have to start supplying data? A: All services must start providing data from 1 st April 2012 9 Q: Will IT system suppliers submit our data to the central system? A: No, they may provide data extraction reports that will help you to populate the intermediate database (IDB) but you will need to register on the Bureau Service Portal to submit data and manage any data quality issues. 10. Q: Who is responsible for central data returns? A: The IAPT service provider is responsible for returning a data extract of its activity each month. Data should be extracted from local systems to populate the IAPT intermediate database (IDB). The IDB is a Microsoft Access database. When populated this should be uploaded via the Bureau Service Portal. Access to the portal is controlled and requires a username and password. Your Caldicot Guardian will need to register with the Portal. The person responsible for uploading data will need to register separately. Registration can be initiated at: http://www.connectingforhealth.nhs.uk/systemsandservices/ssd/prodserv/vaprodopenexe/ IAPT FAQs 1.0-5 -
The registration process involves two stages: 1.Complete Caldicott Guardian Registration Certificate and submit Link called Download the Caldicott Guardian Certificate Please Note: If your organisation has already registered with Open Exeter this step will not be required. Any queries relating to this should be addressed to the Open Exeter helpdesk via the contact details given at the link above. One week or more after the Caldicott Guardian registration is submitted: 2. Complete Data User Certification form and submit Link called Download the Bureau Service Portal Data User Certificate The Caldicott Guardian registration must occur first. Allow one week or more before submitting the Data User Certification Form. If you have a query about your registration or the process for registration you will need to contact the Open Exeter helpdesk via the contact details given at the link above. 11. Q: What if system suppliers do not change systems to reflect the Information Standards Notice? A: In the first instance you should check the detail of your local contract. It is likely to stipulate that system suppliers are required to comply with ISN changes. If this is the case you should expect to get a compliance notice from your system supplier which will detail the implementation timetable. If you are in any doubt you should contact your supplier directly to ascertain their position. 12. Q: What would be the consequence if a service is unable to supply the IAPT dataset by the 1st April 2012? A: Local information schedules held in service contracts stipulate that data should be collected and reported in line with ISNs. Non-compliance could result in payments being delayed or witheld. However, if your service or system supplier is having difficulty in complying with the ISN let us know by contacting iapt@ic.nhs.uk as we may be able to offer assistance. We will also need to acknowledge the omission in national reports. IAPT FAQs 1.0-6 -
Section 3: How the IT works 13. Q: Should we include referrals that have no activity? A: Yes you should include referrals open in the reporting period with no activity. Inclusion rules can be downloaded from http://www.ic.nhs.uk/iapt 14. Q: How will follow-up appointments be recorded? A: The Appointment type field includes the option Follow-up appointment after treatment end. You should use this field to report activity related to follow-up. All IT systems should include this option as it is included in the Data Standard. You should talk to your IT system supplier to understand how your system manages this. 15. Q: Our Trust provides services for a number of commissioners. Can we make one submission that includes all our activity? A: Yes, but it is important that the commissioner code is populated for all records (i.e. for each patient s case or episode of care) otherwise we will not be able to differentiate between commissioned services when reporting. 16. Q: Our IAPT service is made up of a partnership of a number of service providers. Does each organisation need to make a separate submission or can we make one submission that includes all activity? A: A lead provider may make a single submission that includes all the activity carried out by all partners in the commissioned IAPT services. However the central system will only accept one provider code per submission and all feedback will go to the lead provider. More information can be found in the IAPT user guide at http://www.ic.nhs.uk/iapt 17. Q: Does our organisation need an N3 connection in order to transfer data to the central reporting system? A: Yes, the central system can only accept data via N3. Where multiple services work in partnership it may be possible for one organisation to submit multiple extracts on behalf of the partnership. It is important that local IG rules are adhered to. 18. Q: How much does an N3 connections cost? A: An entry level N3 service is a product called N3 Business DSL with a catalogue reference N3-9-5. The indicative costs are as follows N3 Service Description Business DSL single broadband circuit Entry level N3 (excludes BT PSTN line) N3 Catalogue Install set-up Reference cost N3-9-5 1,216 (excluding VAT) Monthly Rental 22 (excluding VAT) IAPT FAQs 1.0-7 -
This is a basic service installed by the user and is based on a single connection. This will meet the needs of the IAPT submission however services may wish to review other available products which may better meet their organisations needs. For further information contact: www.n3.nhs.uk IAPT FAQs 1.0-8 -
Section 4: Patients 19. Q: Is the IAPT Data Standard designed to track patients that move between services and/or commissioners? A: Yes. A pseudonymised identifier is created to allow tracking of patients. Pseudonymisation is a procedure by which identifiable data is de-identified by allocating a pseudonym (or alias). During the pseudonymisation process identifiable data items such as NHS number, date of birth and postcode are used to create a pseudonym. This enables matching of records for the same patient and accurate reporting to take place. This removed the need to use patient identifiable data when tracking someone across time or services. Data quality and completeness is very important in creating the pseudonymised identifier. Services should be vigilent in checking that data extracts are complete and of good quality. 20. Q: Do we need to ask for explicit consent from patients to flow data centrally. A: The NIGB has given the IAPT Programme permission to process patient identifiable data in order to create a pseudonymised patient identifier for use by commissioners and in national aggregate reporting to monitor against IAPT quality standards. Patient identifiable data is collected extensively across all areas of health for both clinical and management purposes. The NIGB has produced the Care Record Guarantee 1 which describes the commitment that NHS organisations and those providing care on behalf of the NHS will use records in ways that respect patient rights and promote your health and wellbeing. The Guarantee says that it is good practice to explain to patients what information will be collected and how this will be used. Also that generally, patients retain the right not to disclose information and to explicitly decline from allowing their information to be used for management or secondary purposes. This principle is true across all national data collections including the IAPT minimum data set, the Mental Health Minimum Data Set (MHMDS), commissioning datasets and all other national data standards. Under the conditions set out by the NIGB IAPT services are not required to obtain consent from their patients to use data for secondary purposes. However the patient rights highlighted above still stand, therefore, if a patient explicitly says that they do not want their information to be shared then local services need to put in place mechanisms to manage their data appropriately. If a patient explicitly declined then their data would not be included in the IAPT intermediate database and so would not be available for use in analysis. It is important to point out that the IAPT Data Standard is typical of other data standards in other areas of health. The data collected will help us to understand how services operate, the treatments they provide and the outcomes they achieve. Services should take time to explain these wider benefits and reassure patients that data will be processed in a secure way in accordance with the strict rules set out in the Data Protection Act. A patient information leaflet explaining the collection and use of patient data is contained with the IAPT Data Handbook (appendix H) 2. 1 http://www.nigb.nhs.uk/guarantee 2 http://www.iapt.nhs.uk/services/measuring-outcomes IAPT FAQs 1.0-9 -
21. Q: Patients have the right to stop personal data being used for secondary purposes such as national reports. How can national reports be generated based on imperfect data returns? A: Patients do have the right to dissent from allowing their information to be used for secondary uses, this is the case across all NHS data collections. Local services should take time to reassure patients that their data will be managed in a safe way and that is subject to strict rules of confidentiality as laid down by Acts of Parliament, including the Data Protection Act 1998 and Health and Social Care Act 2001. Services should explain what data will be used for and how this will help to improve service delivery and inform patient choice. We expect the number of people who exercise this right to be low and unlikely to impact significantly on national reporting. Where service managers are concerned about significant numbers of patient opt-outs please contact us via iapt@ic.nhs.uk as we may be able to offer advice. IAPT FAQs 1.0-10 -
Section 5: Data Items 22. Q: What is the Service request ID data item? A: The Service request ID is an identifier which allows linkage between referral and activity. This will normally be the referral identifier and is often automatically generated by you local IT system. This will always be unique to the patient (otherwise the file will be rejected). 23. Q: Our service does not have an Organisation code, do we need one? If so, how do we get this? A: Yes. Apply for a code via the Organisation Data Service (ODS) service at http://www.connectingforhealth.nhs.uk/systemsandservices/data/ods. Any organisation can request a code, an N3 connection is not a pre-requisite to the request. 24. Q: Some of our patients do not have or do not know their NHS number. Others may not be registered with a GP practice. Will we still be able to include these people in our submission? A: The GP practice code is useful in helping compile reports even when the NHS number is missing. You should therefore take care to include the NHS number when available or the GP practice code if this is known. However, if the GP practice code is not known you should record one of the following default codes: GP Practice Code not applicable V81998 GP Practice Code not known V81999 No Registered GP Practice V81997 Validation checks are undertaken on the data set. If an NHS number is unknown the field should be submitted as a null (empty) data item. Do not guess or return a partial code as this will cause your submission to be rejected. 25. Q: The employment status data item only allows one option to be selected but a person could be receiving a benefit but also working. How do we record this? A: The IAPT ISN introduced changes to the Employment Status data item. This data item now incorporates a benefits option, consequently the separate data item Receiving Benefits has been removed. This change was introduced to bring IAPT in line with the NHS Data Dictionary definition used across other Mental Health services. This is a step in the right direction but it is recognise that further changes may be required to ensure it meets our reporting requirements. The IAPT Programme is working with colleagues in DWP to improve this data item and any changes will be covered in future guidance. In the interim, guidance has been issued to derive KPIs which can be downloaded from: http://www.iapt.nhs.uk/services/measuring-outcomes/ 26. Q: When recording the primary role of the staff member treating a patient how do we record where the staff member has more than roles in the service, or if more than one clinician is present? A: The therapists role is recorded against each appointment, therefore you should record the capacity they are acting in for that particular appointment. If more than one clinician is present you should record the role of the lead clinician at that particulcar session. IAPT FAQs 1.0-11 -
27. Q: How can we record work carried out by IAPT staff that are not identified in the primary role in IAPT service data item, for example, trainees, Employment Co-ordinators or Advisors, and STR workers? A: Following feedback from sites the Primary role in the IAPT service will be expanded to include trainees and employment coordinators in the next iteration of the Data Standard. We will also consider what other staff roles should be included. In the interim you should map to permissible values where possible, otherwise leave as null. If the treatment is carried out by a trainee then the activity should be recorded in the usual way but this field should be left null. This will not stop your submission flowing. 28. Q: Will we continue to measure recovery rates based on people who have had at least two treatments? A: Recovery is measured using scores from outcome measures which are taken at every session. We need at least 2 scores to be able to measure change. For this reason we only include people who have had two treatment sessions in recovery figures. However the new central system will be able to measure the number of people who only have one assessment or treatment session and the reason they left the service. 29. Q: Are Anxiety Disorder Specific Measures (ADSMs) used to measure recovery? A: Recovery is currently measured by counting all patients who have completed treatment that at the start of treatment were above caseness on either PHQ-9 or GAD7 and who at the end of treatment were below caseness on both PHQ-9 and GAD7. Current guidance also notes that ADSMs are of critical importance for the treatment of a range of anxiety disorders and should be used where appropriate. From April 2012 ADSMs will also be used to measure recover were appropriate. The PHQ-9 and GAD7 should be taken at the first assessment. The practitioner should then decide if it is appropriate to use an ADSM. If so the ADSM measure should be collected sessionally or as appropriate and will be used as an alternative to GAD7 in the calculatation of recovery. A document titled Clarification of use of anxiety disorder specific measures provides additional information and can be found at http://www.iapt.nhs.uk/services/measuring-outcomes/ 30. Q: Is the discharge date the date the patient was last seen? A: In the majority of cases the discharge date is the date of the last appointment where the patient and practitioner agree that treatment is completed. In some cases there may be a lapse between the last therapeutic session and the date the patient is discharged from the service. For example, some people will finish treatment but their case is kept open because employment support continues for a short time. If this is the case the discharge date should be the date the employment support finishes. Local processes should be in place to manage patients who do not attend their appointment (DNA). Some services allow the case to remain open for a short period of time in order to allow the patient to re-engage with the service. This is acceptable but should not exceed 60 days. If the patient returns to treatment within this time activity should be recorded in the usual way. If they do not then they should be discharged from the service, in this case the discharge date would be 60 days after the DNA appointment date. You should record the date the patient is actually discharged from the service on your IT system in order that we can report accurately. IAPT FAQs 1.0-12 -
31. Q: Our service does not routinely close cases; do we need to? A: It is important that cases are closed in a timely manner as the central system will only report recovery for the cases that have been closed. If you adopt this service model it is recommended that cases should be closed after 60 days of inactivity. This could be achieved by building functionality into IT systems or by regular audit. IAPT FAQs 1.0-13 -
Section 6: Glossary of Terms Bureau Service Portal The IAPT central data collection and processing system has been developed by the Systems and Service Delivery (SSD) team at Connecting for Health. The Bureau Service Portal (BSP) is the web portal used to submit monthly extracts to SSD. Caldicott Guardian - a senior person responsible for protecting the confidentiality of patient and service-user information and enabling appropriate information sharing. The Guardian plays a key role in ensuring that the NHS, Local Authority Councils with Social Services responsibilities, and partner organisations satisfy the highest practicable standards for handling patient identifiable information. Information Standards Notice -. All new information standards are required to issue an Information Standard Notice (ISN). This provides a high level description of the data standard and informs services and system suppliers what they need to do to comply with the standard. All CfH contracts require IT system supplier to adhere to ISNs. Intermediate Database (IDB) - The data set is submitted using the IAPT Intermediate Database (IDB). The IDB is a Microsoft Access database which contains four data tables as specified in the data set specification. The Standard Specification gives more details on the structure and use of the IDB. Pseudonymisation - Pseudonymisation is a procedure by which identifiable data is deidentified. To undertake this a pseudonym (or alias) is created in a consistent manner, which allows the required reporting (such as identifying different referrals for the same patient) to be undertaken. This removes the need to use patient identifiable data, so allowing patient confidentiality to be maintained. IAPT FAQs 1.0-14 -