Data Collection in IAPT The Importance of collecting data in IAPT-compliant services (References: The IAPT Data Handbook and Appendices available from: http://www.iapt.nhs.uk/services/measuring-outcomes) The purpose of the IAPT Data Handbook is to: Enable local partners to make the best use of IAPT outcomes data to put patients at the centre of the care pathway, deliver outcomes appropriate to need, and improve clinical practice and service quality Provide definitive guidance to enable services to collect routine outcome measures using standard clinical metrics Introduce a new IAPT Data Standard, also known as the IAPT Clinical Record, which develops the extant IAPT Minimum Data Set and forms the basis of the National Data Set. The handbook builds on the original IAPT Implementation Plan (February 2008) and the updated implementation guidance ‘Realising the Benefits’ (February 2010). It replaces the IAPT Outcomes Toolkit (July 2008) and IAPT Key Performance Indicator Technical Guidance (April 2010). This is presentation 1 of 2. IAPT Data Collection 1 covers The Importance of Collecting IAPT Data. IAPT Data Collection 2 covers Collecting IAPT Data. The third document in this suite is the Data Self Assessment Questionnaire which is recommended following the completion of the presentations. Relieving distress, transforming lives

Clinical Outcome Measurement Rare in mental health Great resistance from practitioners Seen as fitting one clinical model only Time consuming? Interferes with patient therapist relationship? Wrong, wrong, wrong! Data collection and outcome measurement is a key principle of IAPT. Effective data collection leads to overall benefits for patients, IAPT workers, supervisors, managers and commissioners.

Patient-reported Outcome Measures (PROMS) To enable: Clinical governance Case Supervision Effective communication with patients Patient involvement in decision making Effective inter-professional communication NICE recommends that psychological therapy services for the treatment of depression and some (but not all) anxiety disorders, are organised in a system of ‘stepped care’, where treatments received by patients should be the least restrictive possible whilst achieving the required out comes. The recommended IAPT stepped care system is supported by the comprehensive use of patient-reported outcome measures (PROMS) to enable clinical governance, case supervision, effective communication with patients to enable them to be involved in decisions about their treatment as well as inter-professional communication.

Central Principles for data collection in IAPT At each and every contact Data used by patients and IAPT workers Provides tangible evidence of treatment progression Used by supervisors to review clinical work Used by managers to facilitate effective service performance Used by commissioners & others IAPT has established several core principles in the sessional collection of outcome measures – Relevant measures should be taken at each and every contact with an IAPT worker delivering low or high-intensity therapy. This data is used by patients and IAPT workers to provide tangible evidence of treatment progression, and by supervisors to review clinical work. It is used by managers to facilitate effective service performance, and by service commissioners and others to demonstrate the direct return on the investment made in services, benchmarked against clear performance targets.

Ensuring Equality and Equity of Access Equality Act 2010 Services are legally required to recognise the diverse needs of individuals in the community Must collect and analyse information of the different experiences of individuals Collect information by age, ethnicity, faith, gender, diagnosis and sexuality Links between physical and mental health Used for health needs assessments IAPT services are intended to be utilised by people experiencing depression and anxiety disorders from all communities within the local population. To ensure equity of access it is vital that services recognise the diverse needs of individuals in their communities. In order to achieve equity of access, information of the different experiences of individuals by age, ethnicity, faith, gender, diagnosis and sexuality, and the recognition of links between physical and mental health must be collected and analysed. This information can be used to inform commissioning and demonstrate cost-effectiveness. It can also be used in assessing the quality of joint strategic health needs assessments (JSNAs) carried out in conjunction with Local Authority health commissioners for their local populations. IAPT data along with JSNA findings, other equality impact assessments and consultations within and among communities help to identify the local need for IAPT services and provides a profile of the local population as to who should be expected to access services. The Equality Act 2010 joins together existing equality legislation and came into effect from October 2010. The Act places a new equality duty on all public sector organisations to promote age equality and to consider reducing socio-economic inequalities. Routine equality analyses should be carried out. These provide an opportunity to assess the effectiveness of measures taken within IAPT services to reduce inequalities and support the provision of culturally competent services. Further guidance on the uses of data in reducing inequalities can be found in the IAPT Equality Impact Assessment Guidance for Commissioners, ‘Being Fair, Including All’, available from the IAPT website.

Clinical Functions of Data Collection Work collaboratively with patients at the outset and throughout a treatment episode Use a combination of patient-centred interviewing and outcome measurement tools Agree with patients the best treatments for their difficulties Review continuing appropriateness of chosen treatment Identify therapy targets Manage the therapy process In stepped care, clinical decisions on allocation and stepping, suitable for the patient, must be taken by the IAPT worker. in conjunction with the patients, not only at the outset but also throughout the duration of a treatment episode. IAPT workers use a combination of patient-centred interviewing and outcome measurement tool (Appendix: IAPT Data Handbook) to come to a collaborative agreement with patients on the best treatments for their difficulties. This process will occur during the initial assessment and at regular intervals thereafter to review the continuing appropriateness of the chosen treatment, identify therapy targets (intrusive thoughts, avoidance behaviour, hopelessness etc) and manage the therapy process including deciding if a different step, or therapist, or type of intensity of treatment is indicated.

What do Patients Think? ‘It was easy to understand, not too technical’ ‘For quite a long time they [the scores] stayed the same and then they started dropping slowly and that was a big boost’ ‘He [the case manager] would go through the questions. And I knew that I was getting better, just through the answers I was giving’ Simpson et al (2008) Mental Health in Family Medicine Patients have reported that they value seeing the scores from their completed clinical outcome measures, and reviewing how their scores change over time. Scores help patients understand more about their condition and can help support and develop the therapeutic relationship. Simpson, A., Richards, D., Gask, L., Hennessy, S. and Escott, D. (2008). Patients' experiences of receiving collaborative care for the treatment of depression in the UK: a qualitative investigation. Mental Health in Family Medicine, 5, 95-104

What do Patients Think? ‘It made you realise if you were having a good week or a bad week. What you had managed to do or how I was actually feeling’ ‘I seemed to improve every time we filled that in, so that was encouraging as well’ ‘It was like a goal to try to bring it down’ Simpson et al (2008) Mental Health in Family Medicine Seeing how the outcome score changes over time is also very helpful, both for those who are improving and for those not responding to treatment, for whom alternative interventions may need to be considered. Simpson, A., Richards, D., Gask, L., Hennessy, S. and Escott, D. (2008). Patients' experiences of receiving collaborative care for the treatment of depression in the UK: a qualitative investigation. Mental Health in Family Medicine, 5, 95-104

What do Workers Think? I liked it, [the PHQ9] I liked to use it every session. I didn’t find it difficult at all. And clients, even if they hadn’t the piece of paper with them at certain times, it was ok…. I liked the simplicity of the PHQ9, it was quite simple, compared with [another widely used measure] and that was really, really good Richards et al (2006) Clinical and clinical case management supervision of IAPT workers is dependent on regular review of clinical outcomes. Outcomes feedback to supervisors supports case reviews, and collaborative treatment planning. Supervisors need to know about the cases of the IAPT workers they are supervising in terms of the caseload, average length of treatment sessions, patient outcomes (including patients identified to be at risk) and levels of incomplete/missing data. Richards, D.A., Barkham, M., Bower, P., Gask, L., Gilbody, S., Lovell, K., Rogers, A., Torgerson, D., Escott, D., Fletcher, J., Hennessy, S., Kendal, S., Lankshear, L., Richardson, R., Simpson, A. (2006). A Trial Platform of Enhanced Care for Depression in Primary Care: Final Report. York, University of York. (available from the MRC)

Critical importance of sessional outcome data collection Recording accurately, regularly and frequently improves the effectiveness of the stepped care model Ensure data available for >90% of all contacts Minimise missing data Use IAPT Clinical Record to improve patient experience and benefits from the service Improve the quality of clinical interventions Aggregate outcomes data to define best practice Unless health and social outcomes are recorded accurately, regularly and frequently, the stepped care model is less efficient and psychological therapy supervision at both low and high intensity cannot be properly informed. In IAPT services, IAPT workers should attempt to collect clinical outcome data for all patient contacts so that data is available for more than 90% of all contacts with all patients. Missing data can be caused by a number of factors including patient distress or objection, language or reading barriers, perceived administrative burden, and lack of understanding of the importance of collecting data. However, this should be minimised wherever possible in order to meet at least 90% complete patient outcomes data. Essentially, this means that at least 90% of therapist and practitioner activity will be accompanied by individual outcomes data. In this way, even patients who leave treatment in an unscheduled manner during an episode of treatment will have some evidence of their progress before they leave the service.

What do Workers Think? It was good practice to get into it (PHQ9, etc) every single time we saw a patient. It was something that did not get skimped on. I’d think, I’ve got forty minutes with you and you’ve got a whole load of stuff to tell me, ……. I’ll just not do that questionnaire...……. But it’s better to get it done …….. at the beginning, because you always find things to use the last five minutes of your time.……….sometimes it also highlights things to talk about. Richards et al (2006) The importance of collecting outcome data at every session in order to gain an accurate impression of the effectiveness of a service was convincingly demonstrated in an evaluation of the Newham and Doncaster IAPT Demonstration sites (see Clark, Layard, Smithies, Richards, Sucking & Wright, 2009, pages (17 – 18). When outcome data is not collected every session, end of treatment scores are unlikely to be available for people who drop out or otherwise leave therapy unexpectedly. This leads services to systematically over-estimate their effectiveness and to miss out on information that is likely to be crucial for future efforts to improve the quality and effectiveness of the service. Clark, D.M., Layard, R., Smithies, R., Richards, D.A., Suckling, R., and Wright, B. (2009). Improving access to psychological therapy: initial evaluation of two UK demonstration sites. Behaviour Research and Therapy, 47, 910-920. Richards, D.A., Barkham, M., Bower, P., Gask, L., Gilbody, S., Lovell, K., Rogers, A., Torgerson, D., Escott, D., Fletcher, J., Hennessy, S., Kendal, S., Lankshear, L., Richardson, R., Simpson, A. (2006). A Trial Platform of Enhanced Care for Depression in Primary Care: Final Report. York, University of York. (available from the MRC)

Structure of IAPT Data Standard Use fields in the IAPT Data Standard to collect: Patient details e.g. Age, faith, gender, ethnicity, employment status, sexuality Disability details, e.g. Co-morbid physical or mental health disability information Referral data e.g. ‘Provisional diagnosis’, to inform the clinical approach, and key dates Appointment data e.g. Outcome scores including anxiety disorder specific measures and key dates to measure recovery rates Complete all required fields The IAPT Data Standard provides a definitive framework for recording patient outcome measures. It enables a consistent approach to recording patient recovery and monitoring. The IAPT Data Standard builds upon the IAPT Minimum Data Set, refining certain data items and adding new ones where necessary to build a comprehensive record of the patient’s experience that can be further analysed to monitor compliance with Equalities legislation, and improve clinical practice and service quality. The standardised data formats (definitions and permissible values) that it provides helps to ensure a consistent approach to data collection that supports the information needs of service planners (national bodies, service providers and commissioners). Some of the data collected in local systems will be transmitted to a national data set. The IAPT Data Handbook includes further information about the development of information systems to that comply with the IAPT Data Standard. The data items can be logically split up into four sections; patient details, disability, referral and appointment. Patient Details - personal demographic data that relates to individual patient differences such as age, faith, gender, ethnicity, employment status, and sexuality, These data items are especially important to measure and ensure equity of access in line with equality legislation. Disability – a patient may have multiple disabilities, or they may have none. Co-morbid physical or mental health disability should be collected early in the care pathway, some even prior to initial assessment where this data is available from the referrer. Referral – summary information including provisional diagnosis and key dates should be updated at relevant points along the patient’s care pathway. Date information can be used to calculate waiting times. Provisional diagnosis is included to inform the clinical approach and to ensure patients receive the right treatment. Appointment - relates to an interaction with a patient by a health care professional with the objective of making a contribution to the health care of the patient. This section captures details of each appointment. Outcome scores and key dates are recorded to measure recovery rates and should be updated during the patient’s care. These items should be recorded at every contact with the patient, including face-to-face, telephone and other methods such as email. Treatment type data is included to help services monitor NICE compliance and manage treatment inputs. Clinical outcome measures include measures of symptoms, and social and occupational functioning.

Remember ALL patients should complete measures and IAPT workers should ensure they are accurately recorded in information systems Measures should be taken at EVERY contact Service managers and supervisors should ensure all staff are knowledgeable of the importance of data collection in IAPT-compliant services. Data collection is an integral feature of the patient-therapist relationship in IAPT services. Accuracy and completeness of data is particularly important for understanding recovery rates and to verify the effectiveness of services. Further information on the importance of data completeness in calculating recovery rates and for dealing with missing data is contained in the IAPT Data Handbook. Data completeness measures should be included in local key performance indicator (KPI) measures. Data completeness will be of critical importance where systems for ‘payment by results’ are operating. National KPIs also rely on accurate and complete information input to systems by IAPT workers. For further information on National IAPT programme KPIs refer to guidance available at http://www.iapt.nhs.uk/services/measuring-outcomes .

Implementation Messages Make data collection integral to the management of patient pathways Use data as a clinical management tool not as a management ‘bolt-on’ Do not add to measurement burden unnecessarily Data collection is not a ‘bolt-on’ Data collection aids the recovery of the patient.

And Finally…. The IAPT Data Handbook contains detailed information on the value and importance of IAPT Data collection. Measurement tools are contained in the separate appendices file The documents are free to download from http://www.iapt.nhs.uk/services/measuring-outcomes Thank You! All participants are strongly encouraged to download the latest edition of the IAPT Data Handbook and retain it as a reference. Version 1.0 was issued in August 2010. Version 2.0 will be available from January 2011. This presentation is based on the IAPT Data Handbook v2.0.