Care Quality Indicators - Specialist Children s Services

Transcription

1 Care Quality Indicators - Specialist Children s Services Final Project Report VERSION: 1.0

2 Document Control: Document Control Version 1.0 Date Issued 05/04/2011 Author(s) Lindsay Mathie Other Related Documents Comments to Document History Versio n Date Comments Author(s) V1.0 05/04/11 Revised after comments from Steering Group V0.4 11/03/11 Revised after comments from Steering Group L Mathie L Mathie V0.3 02/03/11 Revised after comments from Project Team L Mathie V0.2 25/02/11 Revised after comments from Project Team L Mathie V0.1 15/02/11 First Draft L Mathie, C, Clark, J, Muir Date: 05/04/2011 Page 2 of 34

3 Table of contents 1. Introduction Purpose Background Project Aims and Objectives Project Scope In scope Out of scope Project Governance Project Methodology Influences Six Dimensions of Quality Association of Public Health Observatories (APHO) The Healthcare Quality Strategy for NHS Scotland The IHI Model for Improvement NHS Scotland Quality Improvement Hub Project Approach Project Phases Communication National Services Division Links Made With Other Work Streams Indicator Development and Measurement Tools Measurement Plan Form Plan, Do, Study, Act Project Outputs Engagement with Paediatric Networks...17 Date: 05/04/2011 Page 3 of 34

4 5.2 Concepts for Care Quality Indicators Exclusions during the Project Children and Teenagers Scottish Cancer Network (CATSCAN) Indicators Covered by Other National Work Streams Data Reporting and Data Collection Tools Data Reporting Data Collection Tools Discussion and Lessons Learned Recommendations...24 Appendix 1 - Steering Group Membership Appendix 2 - Project Board Membership Appendix 3 Measurement Plan Form...27 Appendix 4 Plan, Do, Study, Act Template...28 Appendix 5 - MCN Clinical Leads and Network Managers...29 Appendix 6 Clinical Quality Indicators, MCN Specific...30 Date: 05/04/2011 Page 4 of 34

5 1. Introduction 1.1 Purpose The purpose of this paper is to outline the steps taken and outcomes achieved by the Care Quality Indicators for Specialist Children s Services Project. This report will detail the background, aims and objectives, the methodology adopted, final outcomes and recommendations. 1.2 Background In 2006 a National Steering Group was established to review the delivery of specialist children s services and make recommendations for sustainable service delivery. The commitment to do this was set out in Delivering a Healthy Future, An Action Framework for Children and Young People s Health in Scotland (Scottish Executive, 2007), and reinforced in Better Health, Better Care (Scottish Government, 2007). The National Steering Group for Specialist Children s Services in Scotland published the report The National Delivery Plan for Children and Young People s Specialist Services in Scotland (Scottish Government, 2009). The report suggested that: The existing support arrangements for Managed Clinical Networks (MCNs) in specialist children s services should be extended and strengthened to provide an infrastructure, with both regional and national accountability, that can fully support the introduction, operational management and ongoing development of all networks in specialist children s services in a co-ordinated whole-system manner. The Scottish Government initially committed 32 million to improving specialist children s services over an initial period of three years ( ). This followed extensive service reviews which highlighted the vulnerability of some services and the need for widespread improvements. The National Delivery Plan (NDP) outlined that Work will accordingly be undertaken with Information Services Division (ISD) and NHS Quality Improvement Scotland (QIS), in collaboration with professional bodies such the Royal College of Paediatrics and Child Health, to agree additional realistic outcome measures that will support the implementation of the Delivery Plan and the longer-term development of specialist children s services. 1.3 Project Aims and Objectives The aim of this project was to allow services to demonstrate for themselves and to others in what ways the additional investment resulted in improvements in multiple dimensions of quality for those children and young people that require specialist services. The three key objectives were to: Define quality and outcome indicators that reflect the multiple dimensions of health care quality featured in Better Health, Better Care (Scottish Government 2007): safe, effective, efficient, patient-centred, timely and equitable health care. The project focussed on effective, efficient, timely and equitable. Exploit data currently collected to support quality improvement. Develop the capacity in managed clinical networks to collect, analyse and act on relevant additional data without imposing excessive cost by March Date: 05/04/2011 Page 5 of 34

6 By having a suite of care quality indicators it is now possible to describe aspects of quality that we wish to assess for improvement after the injection of substantially increased funding. While the presence of indicators, in the absence of data, is not sufficient to answer the question has the quality of care for those using children s specialist services improved, having agreement on what aspects of care those indicators should measure is necessary to answer that question. This project has delivered the suite of indicators and engaged with MCNs in how these should be measured. The ongoing reporting process supported by NSD will allow networks to demonstrate improvements against the indicators as part of the NSD quality assurance/performance management process. Date: 05/04/2011 Page 6 of 34

7 2. Project Scope 2.1 In scope The scope of Care Quality Indicators project was to achieve the following requirements: Develop generic quality indicators for specialist children s services MCNs Define operational definitions for network-specific indicators that echo the agreed generic indicators Engage with all national paediatric managed clinical networks in Scotland Investigate and provide access to any existing data development and data collection tools Map data requirements against current national data sources 2.2 Out of scope The following were agreed as out of scope for this project: Key Performance Indicators (see below) Waiting times Child and Adolescent Mental Health Network Designing any new data development or data collection tools Five quality assurance indicators were initially developed through this project. The National Delivery P lan Implementation Group (NDPIG) requested these be taken forward by the Regional Planning Groups and reported through their quarterly reports (table 1). They have therefore been highlighted as out of scope for the final project report. Table 1: Key Performance Indicators Ref. Specific name of the measure SG01 Number of WTE staff in post SG02 SG03 SG04 SG05 Number of patients being seen by specialist children's services Time to first outpatient appointment Number of clinics operating Number of episodes of care delivered in a local setting 2.3 Project Governance The project followed ISD Project Governance producing: Project Brief Project Initiation Document Project Plan Risk Register Communications Strategy Monthly Highlight reports Reporting structure was identified as follows: Date: 05/04/2011 Page 7 of 34

8 Figure 1: Project Governance reporting structure Membership and remit of the Project Steering Group and Project Board are detailed in Appendices 1 & 2 Date: 05/04/2011 Page 8 of 34

9 3. Project Methodology 3.1 Influences This project initially looked to other existing work steams/areas for guidance on how and in what areas of clinical practice to develop indicators and how quality improvement could be measured Six Dimensions of Quality In 2002, the Institute Of Medicine identified that health care should be safe, effective, patientsix dimensions of quality centred, timely, efficient and equitable. These became know as the and are recognised internationally as aims for improvement. Safe: avoiding injuries to patients from the care that is intended to help them. Effective: providing services based on scientific knowledge. Patient-centred: providing care that is responsive to individual patient preferences, needs and values and assuring that patient values guide all clinical decisions. Timely: reducing waits and sometimes harmful delays for both those who receive care and those who give care. Efficient: avoiding waste, including waste of equipment, supplies, ideas, and energy. Equitable: providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or socio-economic status. Suggested indicators were subsequently mapped to these dimensions Association of Public Health Observatories (APHO) The Association of Public Health Observatories (APHO) represents a network of 12 public health observatories (PHOs) working across the five nations of England, Scotland, Wales, Northern Ireland and the Republic of Ireland. They produce information, data and intelligence on people's health and health care for practitioners, policy makers and the wider community. APHO developed the Good Indicators Guide, 2008, specifying dimensions for developing and monitoring indicators (importance and relevance; validity; possibility; meaningfulness; implications) which were used as a guide during the early phases of indicator development in this project. Proposed generic indicators were considered against the APHO dimensions The Healthcare Quality Strategy for NHS Scotland The Healthcare Quality Strategy for Scotland, May 2010, set out three quality ambitions: 1. Mutually beneficial partnerships between patients, their families and those delivering healthcare services which respect individual needs and values and which demonstrate compassion, continuity, clear communication and shared decision-making. [Personcentredness] 2. There will be no avoidable injury or harm to people from healthcare they receive, and an appropriate, clean and safe environment will be provided for the delivery of healthcare services at all times. [Patient Safety] 3. The most appropriate treatments, interventions, support and services will be provided at the right time to everyone who will benefit, and wasteful or harmful variation will be eradicated. [Effectiveness, efficiency, timeliness and equity] Date: 05/04/2011 Page 9 of 34

10 The strategy also outlines proposals for the development of a Quality Measurement Framework. 12 potential national Quality Outcome Measurements have been proposed which include measures of success against the three quality ambitions. The Quality Measurement Framework also allows for supplementary local and national indicators that will underpin progress towards our Quality Ambitions. At the time of publication of this strategy the generic indicators had already been developed. Further work with the MCNs allowed additional alignment to these quality ambitions The IHI Model for Improvement NHS Scotland have partnered with the Institute for Healthcare Improvement (IHI), and others, to deliver the Scottish Patient Safety Programme (SPSP), using The Model for Improvement 1 : Set Aims: What are you trying to accomplish Establish measures: How will we know that a change is an improvement Select changes: what change can we make that will result in an improvement Test change(s): Plan, Do, Study, Act (PDSA) The Model for Improvement (figure 2) is a simple yet powerful tool for accelerating improvement. The model is not meant to replace existing change models that organisations may already be using, but rather to accelerate improvement. This model has been used very successfully by hundreds of health care organisations in many countries to improve many different health care processes and outcomes. Figure 2: Model for Improvement The SPSP suggest, as their approach to measuring quality improvement, following these eight steps: Figure 3: Eight steps to improvement 1 Associates in Process Improvement (API) Date: 05/04/2011 Page 10 of 34

11 It was agreed by the NDP Implementation Group that this should be the model adopted by the MCNs for measuring quality improvement in their service. This allowed for a less labour intensive approach to be adopted, compared to traditional audit, where changes could be introduced and results seen in a more timely fashion NHS Scotland Quality Improvement Hub The Institute for Healthcare Improvement (IHI) hosts an online improvement tracker tool, as part of an Extranet they offer and used by staff working on the SPSP. The improvement tracker allows users to measure and report on improvement and the Extranet provides a centralised resource to keep up to date with current SPSP activities and communications. A replacement for the software to measure quality improvement is being developed by the NHS Scotland Quality Improvement Hub. The Hub is a collaboration among a number of special health boards and the Improvement Support Team in Scottish Government. The overarching aim of the Hub is to provide an NHS Scotland system-wide infrastructure to equip staff with the knowledge, skills and resources to build continuous quality improvement into their work as a matter of routine. However, as this was in the early stages of development, support and resource was not available to this project. Date: 05/04/2011 Page 11 of 34

12 4. Project Approach 4.1 Project Phases The project was split into three distinct phases which are described below: Phase 1: Collation of Existing Indicators and Engagement with Pathfinder MCNs A desktop exercise was carried out to catalogue existing indicators from various sources including: Information Centre for Health and Social Care in England Various established MCNs Royal Colleges in the UK International Health Care Authorities and organisations This resulted in an initial list of some forty indicators which were grouped against the six dimensions of quality (section 3.1.1) and mapped to the APHO Good indicator Guide (section 3.1.2) and used as the basis of a consultation document that was sent to all Specialist Children s Services Clinical Leads and MCN Managers in Scotland in November Consultation groups were also set up with patient/carer representatives to ensure an insight into what issues they felt were important were understood and these mainly focussed on co- ordination of care and family involvement. Meanwhile representation at the Rheumatology, Endocrinology and Gastroenterology MCN data sub groups was agreed and subsequently various meetings were held to discuss proposals around the indicators with these networks. Discussions were held with various other organisations who were also involved with quality aspects of patient care to ensure we learned from their knowledge and expertise when developing the indicators (section 4.4). Phase 2: Data development and data collection methodology The consultation responses from phase 1 were used to produce a priority list resulting in a workable number of indicators that could be put forward for development. Generic concept headings and data definitions were developed for these indicators. The Model for Improvement (section 3.1.4) was proposed as an approach that networks could take to test service improvements. This includes methods to establish, collect and report on indicators. The intention was to establish a co-ordinated set of local continuous improvement projects, using nationally-agreed definitions for each specialty. Use of nationally-consistent definitions within a co-ordinated structure would allow appropriate comparisons to be made. Alongside audit, such a hybrid would support the use of data for improvement and also allow the same data to be used (where appropriate) to monitor performance. This proposal along with the revised list of thirteen indicators was presented to the NDP Implementation Group and subsequently approved in March Work was then undertaken with the three pathfinder MCNs to look at how each of these generic concept indicators could be taken forward into something that was specific and measurable for the patients using their services. The networks needed to devise specialtyspecific indicators that echoed the generic ones, agree specific aims statements (how much, Date: 05/04/2011 Page 12 of 34

13 by when) for their improvement projects and develop data collection plans. Measurement Plan Forms, (section 4.5.1), were used as a template for defining specific indicators. Links were also made with the NSD project to develop a Clinical Audit System to ensure that data required to report on the indicators were integrated into the audit tool where possible (section 4.3). During this phase the Healthcare Quality Strategy for NHS Scotland (section 3.1.3) was published. Specific sections referred to some of the indicators that had been proposed by this project and the decision was taken at this time to exclude these from the project as the concepts would be taken forward by other programmes of work (section 5.3.2). At the end of this phase the decision was taken to transfer the Key Performance Indicators to the Regional Planning Groups (section 2.2). Five concepts for generic indicators remained which were to be taken forward by the Children s Specialist Services MCNs (section 5.2). Phase 3: Engagement with all Specialist Children s Services To ensure all specialties had an opportunity to gain from the experiences gained by the pathfinder networks in the first two phases of this project it was requested by the NDP Project Team, in June 2010, that all Paediatric MCNs (section 5.1) were engaged with during the remainder of the project. This shift in focus to cover all networks resulted in a cut back in working with the three original networks in collecting and analysing any data collected. Although some capacity building did happen it wasn t as much as was originally planned. Further consultation was undertaken with all these networks in September 2010 to ascertain their level of knowledge in the Model for Improvement and to also get a baseline picture of where they were in developing or collecting data on any specific indicators. This then allowed an awareness package to be developed and individual meetings were held with the MCNs to inform them on the process of indicator development, using the Measurement Plan Forms (section 4.5.1), the Model for Improvement (section 3.1.4) and the Plan, Do, Study Act method (section 4.5.2). Subsequent follow up meetings were held, where requested, to further facilitate the networks in developing their specific indicators. 4.2 Communication It was acknowledged that appropriate communication with stakeholders would be essential if this project was to achieve its aims and more importantly achieve ownership from the clinical community. This was achieved through the following: Women & Child Health Information Programme Web pages developed under the WCHIP area on ISD Scotland website detailing methodology adopted and progress updates. Facilitated two workshops on quality indicators at the NSS conference, Best Possible Start for Children. (March 2009) Facilitated two workshops on quality indicators at the Specialist Children s Services Implementation Plan Conference. (March 2009) Regular updates on progress via ISD (WCHIP) newsletter. Attended Specialist Children s MCN Network Managers meetings. Consulted with all paediatric networks Clinical Leads and Managers on generic indicators. (November 2009) Date: 05/04/2011 Page 13 of 34

14 Attended 2 carer focus groups to gather their views on what a better service would look like. Their comments focused on the efficiency and effectiveness components of care. Consulted with all paediatric networks Clinical Leads and Managers regarding progress in the development/collection of indicators. (September 2010) 4.3 National Services Division National Services Division (NSD) is responsible for commissioning and performance managing specialist clinical services and Managed Clinical Networks on behalf of NHS Scotland. The specialist services commissioned by NSD are crucial to the diagnosis and treatment of rare conditions including cystic fibrosis and cleft lip and palate. The NDP recommended increased utilisation of the managed clinical network model as a means to facilitate shared good practice, service development, data gathering and audit and user engagement. It also supported the creation of four national managed clinical networks (NMCNs) together with an increase of staffing levels in both regional specialist centres and district general hospitals. To ensure appropriate links were made with the ongoing work of NSD, representatives were invited to sit on both the Care Quality Indicator Project Steering Group and Project Board. As part of the funding from NDP, NSD also commissioned the development of an audit tool to support the NMCNs to collect and report on valuable data. It aimed to deliver the following requirements: Provide a data entry facility for network clinicians to enter in relevant and valuable clinical information to support clinical audit. Provide a basic patient register for each MCN, so that each network is aware of the total number of patients that they are managing and relevant demographic information. Support multidisciplinary teams by allowing clinical staff in the same MCN, but distributed geographically across Scotland and from different clinical specialties, to access the same clinical information about the patients they are treating. Produce user-defined reports to support network clinical audit to track changes in the quality of care and patient outcomes (e.g. against agreed clinical quality standards and by recording adherence to MCN protocols). Support staff to access patient information remotely from their main base when they need access to basic patient details. It became apparent that there was a clear link between these two projects and adopting a coordinated approach has ensured that the indicators can be captured by the clinical audit system. Date: 05/04/2011 Page 14 of 34

15 4.4 Links Made With Other Work Streams During the project contact was initiated with various organisations and projects in Scotland that assisted with the development of the various indicators. Better Together Scottish Patient Safety Programme (SPSP) Paediatric Patient Safety Programme (PPSP) Quality Improvement Scotland (QIS) MCN Governance Team Patient Reported Outcome Measures being led by the Scottish Government and QIS North of Scotland Public Health Network (NoSPHN) 4.5 Indicator Development and Measurement Tools Measurement Plan Form Reflecting on the Model for Improvement (section 3.1.4), the following points needed to be considered to fully define an indicator: What measures were required. Where to find the data. What support was required to collect, interpret and use the data. The IHI devised a Measurement Plan Form (MPF) which addressed all these points and it was suggested that the MCNs adopt one for each indicator. This allowed them to break the indicator down into manageable parts where they could specifically define each component part in order that this could be adopted across the network with consistency. See appendix 3 for an example of a measurement plan form template Plan, Do, Study, Act Adopting the Model for Improvement methodology requires services to suggest and test changes to see if they result in care improvements before implementing on a wider scale. The Plan, Do, Study, Act (PDSA) process allows services to break down the change into four steps. Expected consequences, and hopefully improvements, could then be predicted, and the consequences of the change then monitored (do they match expectations and what more can we learn) and results recorded. The PDSA details each step as follows: Step 1: Plan Plan the test or observation, including a plan for collecting data. State the objective of the test. Make predictions about what will happen and why. Develop a plan to test the change. (Who? What? When? Where? What data need to be collected?) Step 2: Do Try out the test on a small scale. Carry out the test. Document problems and unexpected observations. Begin analysis of the data. Date: 05/04/2011 Page 15 of 34

16 Step 3: Study Set aside time to analyse the data and study the results. Complete the analysis of the data. Compare the data to your predictions. Summarise and reflect on what was learned. Step 4: Act Refine the change, based on what was learned from the test. Determine what modifications should be made. Prepare a plan for the next test. This allows processes to be refined by starting with an initial test on a small scale, carrying out repeated PDSA cycles, learning from each test and refining the process until it s finally ready to be fully implemented and made permanent. See appendix 4 for the PDSA template. Date: 05/04/2011 Page 16 of 34

17 5. Project Outputs 5.1 Engagement with Paediatric Networks Fourteen Paediatric MCNs were engaged with during the project. Initially three networks were identified for more detailed work: Endocrinology, Rheumatology and Gastroenterology (SPGHaN), to develop and test a model which could be applied to the other MCNs in Scotland. Paediatric Endocrinology the network supports endocrine services in improving standards of clinical care of children through the establishment of continuous quality improvement systems and process. The service deals with disorders of hormonal development and function including growth, puberty and endocrine glandular disorders and disorders of bone and mineral metabolism. Endocrine disorders are wide ranging, affecting children of all ages and can be primary or secondary to other conditions. Some conditions may be managed by a general paediatrician with an interest in endocrinology while the management of other, more rare or complex conditions, requires more specialist care at tertiary centres with direct access to specialist laboratory, radiology and other services. Paediatric and Adolescent Rheumatology Network aims to strengthen and develop specialist services for children with rheumatic conditions in Scotland. Rheumatic diseases are the biggest cause of disability in children in the UK. Proper diagnosis and early intervention can minimize both short and long term morbidity of these conditions. Changes in approach to treatment and available drug therapies over the last decade have resulted in dramatically improved outcomes. Children and young people with rheumatic conditions should now reasonably expect that their disease will be controlled and that they will enter adult life without disability. Scottish Paediatric Gastroenterology, Hepatology and Nutrition Network (SPGHaN) - aims to promote and co-ordinate clinical services from a regional and national perspective for children with gut, liver and nutritional diseases and problems. Children and Young People with Cystic Fibrosis the network aims to strengthen and develop specialist services for children with cystic fibrosis in Scotland. The Network supports the service in improving standards of clinical care through the establishment of continuous quality improvement systems and processes. Cystic Fibrosis (CF) is a life-limiting inherited condition caused by a genetic mutation which is present in around 1 in 24 of the Scottish population. Cleft Lip and Palate (CLEFTSiS) this network aims to bring together all the different health professionals in Scotland who are involved in providing care for patients between 0 and 20 years of age who have cleft lip and/or palate. Home Parenteral Nutrition (HPN) this network aims to ensure equity of access for patients in Scotland who require this specialised treatment for intestinal failure. HPN is a method of intravenous delivery of fluids and nutrients directly into a central vein. The parent or carer is taught to manage this sterile routine, which, once learned, can enable the patient to be cared for at home rather than in hospital. Complex Burn Injury in Scotland (CoBIS) - this network aims to enhance the care of patients with burn injury in Scotland. Date: 05/04/2011 Page 17 of 34

18 Inherited Metabolic Disease (IMD) this network aims to improve diagnosis, treatment and support for all individuals and families affected by Inherited Metabolic Disorders, wherever in Scotland they live. Scottish Paediatric Renal Urology Network facilitates the care of children and young people with renal and urological disease via local teams delivering care close to home. Through collaboration and multi-disciplinary working, the aim is to see an improvement in the outcomes of children and young people with renal and urological disease. Congenital Diaphragmatic Hernia this network aims to improve long-term clinical outcomes in patients with Congenital Diaphragmatic Hernia by the provision of appropriate support to the affected child and their family. This is achieved through guiding investigations and short-term management of the affected child, developing a long-term management plan, linking clinical personnel who are involved in patient management, collecting data, providing the opportunity for the educational development of its NHS staff and facilitating research and audit Scottish Genital Anomaly Network (SGAN) - cares for patients who have a disorder of sex development or who are born with an abnormality of the genitalia. The network aims to develop care pathways for the more common conditions, provide clinical case discussions and develop a register to develop a picture of demand across the country. Children with Exceptional Healthcare Needs (CEN) - aims to strengthen and develop specialist services for children with complex and exceptional healthcare needs in Scotland. The group of children and young people this network is aimed at is defined by their complexity of healthcare. Scottish Paediatric Epilepsy Network - Paediatric Epilepsy is the most common serious neurological disorder and the network estimates that there are approximately 4,200 children and young people in Scotland with the condition. Often the diagnosis and management of epilepsy is complex so the Scottish Paediatric Epilepsy Network aims to promote the delivery of high quality care to children and young people with the disorder in Scotland. Scottish Muscle Network - aims to ensure that patients with such disorders have equitable access to local health, social and educational services and professionals who have an understanding about their condition. There are approximately 3000 patients in Scotland with neuromuscular disorders and the Scottish Muscle Network aims to improve the care provided for all patients. Many of the conditions covered by the Network are extremely rare with only one or two sufferers in Scotland. However, these conditions are long term and often result in sever and complex disability for the patient. See appendix 5 for details of Clinical Leads and Network Managers. Date: 05/04/2011 Page 18 of 34

19 5.2 Concepts for Care Quality Indicators Five Generic Care Quality Indicators were devised for development and adoption by the MCNs. (table 2) Table 2 : Concepts for Generic Care Quality Indicators Ref. Measure MCN01 Clear referral pathways available and used MCN04 Routine & regular multi disciplinary team (MDT) reviews carried out MCN05 Received evidence based care: compliance with standards & protocols MCN06 Transition to adult care MCN07 Patients & Carers should receive an individualised care plan that is explained Unfortunately due to the timescales available of this project and the complexities of the process of transition to adult care, including the involvement of adult services, few networks have been able to develop and agree a specific indicator relating to transition to adult care. Specific transition sub groups have been established within the MCNs and two indicators have been drafted for discussion and refinement by the networks through this route over the coming months. All the networks engaged with have developed specific indicators to mirror the generic ones. Further details on the specialty specific indicators can be found in appendix Exclusions during the Project Children and Teenagers Scottish Cancer Network (CATSCAN) CATSCAN were excluded from our discussions based on the fact that they already reported to The UK Children s Cancer and Leukaemia Group (CCLG) and have their own measures in place. This was approved by our Steering Group and also reported to the NDP. During the lifespan of this project it was decided that CATSCAN should become a Managed Service Network, as opposed to a network, and are currently in the process of defining their information needs and associated ehealth strategy. It was agreed to regard CATSCAN as separate from the plans for generic database for networks, and that the indicators should be taken forward by the MSN as part of their new reporting procedure Indicators Covered by Other National Work Streams Although patient-centredness was not a key component of this work, the project team liaised closely with Better Together through their director. Some of the proposed generic MCN indicators concerned patient-reported outcomes (Quality of Life), patient experience and Staff Experience. Measurement of these dimensions is included in the proposed NHS Scotland Quality Measurement Framework. Discussions took place with colleagues in QIS, NHS Tayside and the Better Together Programme about these, (see table 3). Work continues elsewhere to investigate Patient Reported Outcomes Measures (PROMs), Patient Experience and Staff Experience and thinking on how to measure them continues to evolve. It was therefore recommended that these were not tested further in detail with the MCNs as part of this project. However, exploration of how the indicators that were developed could be taken forward through work with the other national initiatives. Date: 05/04/2011 Page 19 of 34

20 Table 3 Indicator areas covered by Better Together Programme & Person-centred aspect of Quality Strategy Indicator Concept Quality Strategy reference Explored with Potential national quality Scottish Paediatric MCN02 outcome measures: Psychology Network (QoL) Functional Patient Reported Outcomes. Better Together, QIS, Patient Quality of (NHS QIS have been tasked Groups (PROMs) Life (QoL) with taking this forward) Scottish Government Self assessed general health (PROMs) Potential national quality outcome measures: Better Together. Bundle of measures of patient MCN03 Healthcare experience. experience: Patient (Ongoing work with Better Respect and dignity; did I satisfaction Together ) get what I needed when I (overall Patient experience of access needed it?" experience) relationship empathy empowered to self-care Patient Groups (measures) MCN08 Potential national quality NHS Tayside (team vitality) Staff outcome measures: satisfaction Better Together (bundle of Staff experience staff experience measures) 5.4 Data Reporting and Data Collection Tools Data Reporting It was agreed with NSD that the NMCNs will report on the care quality indicators through their six-monthly and annual reports. The information required to populate the reports will include the percentage improvement achieved in each of the indicators along with the changes and improvements implemented in their services to achieve this. It is important to note that the indicators developed in this project are intended to support care teams and care networks to improve the services they offer (in a care quality improvement sense) and should be used in a local sense by the clinicians who are delivering the care. The indicators do however define aspects of care quality that can be assessed through other reporting mechanisms to demonstrate to others (regionally and nationally for quality assurance and scrutiny) that care quality has risen. The NSD project to procure a Clinical Audit System for MCNs will make this easier. The MCN-specific indicators focus on very specialty-specific measures and therefore cannot be easily compared across specialties Data Collection Tools Discussions were held with the MCNs over possible tools for data collection, including: NSD Clinical Audit System Local data collection tools (Excel spreadsheets, databases) Excel charts such as the run chart templates produced by the Institute for Healthcare improvement (IHI) Date: 05/04/2011 Page 20 of 34

21 This project was only in a position to make recommendations with regards to available tools for data collection and although support was provided, it was left up to each individual MCN to determine which method best suited their circumstances. Date: 05/04/2011 Page 21 of 34

22 6. Discussion and Lessons Learned The project has initiated discussions with networks resulting in early development of indicators and for some MCNs pilot data is now being collected. However, adoption and routine monitoring of specific clinical indicators is a longer term aim. One guide to timescales is perhaps The Scottish Patient Safety Programme (SPSP) which was set up in 2007 to steadily improve the safety of hospital care. With dedicated support and full funding the SPSP has expanded from small scale data collection in single pioneer care teams in some NHS Boards to more recently the growth of national data in all Scottish Hospitals. The care quality indicators (CQIs) for Specialist Children s Services project has been run on a much smaller scale but has demonstrated early signs of success echoing the early stages of the SPSP. To build on the success of this project the momentum must be maintained and enthusiasm retained. The Healthcare Quality Strategy for NHS Scotland (Scottish Government 2010) aims to ensure that national and local audit programmes support the development of appropriate indicators of quality; rigorous peer review and local action to address inappropriate variations in care improve the quality of healthcare and healthcare experience. Through the work of the CQI project it has given MCNs the knowledge and tools to develop their indicators which will allow them to participate in the Quality Outcome measures which have been proposed in the strategy and be at the forefront of Quality Improvement in Scotland. An informal approach by this project has been made to the Quality Improvement Hub to try and obtain further training and support for the MCNs and associated staff in NSD in Quality Improvement which should hopefully help embed this project further in these specialist services. This is now being followed up by the Head of Specialist Children s Services MCNs in Glasgow to try and secure this resource. The time working with the 3 pathfinder MCNs during this project was invaluable in providing a framework for other MCNs to develop and take forward their own indicators. Observations and points to note include the following: MCNs require to agree and set up a network governance framework so that all clinicians consent to adopt the decisions that the Network make. A sub group should be set up with proper representation (clinicians, specialist nurses, MCN managers and research personnel) to develop the indicators on behalf of the MCN. There is a requirement for enthusiastic and committed clinical leadership to drive this forward within the network Agreement of who is responsible for collecting the data is required ideally this is the person responsible for delivering that particular aspect of care. Traditionally, data collection is done by a data manager or clerical staff rather than the clinical team. This results in difficulties in data collection and ownership across distributed clinical teams, especially in specialist services when sharing perspectives on data is more difficult due to geographical separations. MCNs require support to incorporate data collection within their plans to improve services. Further training is required to build on the knowledge gained during the limited time of this project. Development of indicators has been an unfamiliar concept to the networks and has required support from members of the project team to take this forward. As this project has been time limited focus has been on the development of indicators whereas the data Date: 05/04/2011 Page 22 of 34

23 collection and interpretation aspects have only been conveyed to the networks with no substantial data collection achieved in the timescales. Time needs to be taken to explain to those involved in the MCNs the repeated sample over time approach, as promoted by the Model for Improvement, in order to gain clinical acceptance of this methodology. Understanding of the difference between data for improvement, data for judgement (audit/performance management) and data for research helps groups to adopt and implement this method much faster. Where networks were assigning the indicator development to a sub group the time taken for development and network agreement was in the region of 9-12 months. It was essential that the whole network agreed to the proposal from the sub group to ensure compliance across the network was achieved. There is a need for a reporting database to gather and report on the indicators rather than risking corrupting any existing clinical database used for patient management This project has focussed on specialist children s services which has naturally involved conditions with very few patients. This posed various challenges of working with small numbers of patients (including statistical validity and how this data could be presented whilst keeping Information Governance and Data Protection issues in mind). There still appears to be issues regarding sharing of cross border information in the networks which would hamper network staff employed by one NHS Board obtaining information on patients in another NHS Board. NSD are working to resolve this issue with the Caldicott Guardians on behalf of the networks. Although this project did not, in the end, focus attention on quality of life measurements it should be noted that during discussions it was acknowledged that formulating quality of life measurements for these children and young people was difficult due to the ongoing/ chronic nature of the conditions. Whilst this project looked to the work of the SPSP for examples of implementation of the Model for Improvement, the MCN indicators are very different from SPSP indicators in degree of specificity and broader applicability. This work differed from SPSP in two important regards. 1. MCNs tend to cover much smaller groups of patients (explaining their designation as regionally or nationally managed services) and to be much more described by diagnosis (diagnoses) groups compared with services that are the focus for SPSP. 2. SPSP is largely concerned with hospital teams who work on the same site, whereas MCNs by their nature span distinct geographical locations and require team working across them. Application of these methods to MCNs therefore required developing generic indicators and then having the MCNs develop their own specific indicators in order that they could then measure. In the early stages of this project it became apparent that there was not much evidence of this type of work in practice elsewhere in the healthcare community. Having engaged with fourteen specialist paediatric networks who have all accepted the model and have, or are in the process of, developing their specific indicators should be commended. The majority of this work in the MCNs will be taken forward with no extra resource but it is accepted that the long term benefits for the service, and more importantly the patient, will be seen in due course. Date: 05/04/2011 Page 23 of 34

24 7. Recommendations The following are recommendations from this project: MCNs begin to implement their data collection plans to collect and report on the indicators they have developed and put processes in place to continually look at ways to improve their services to achieve/exceed compliance rates set. These improvements should be monitored by NSD through the existing reporting mechanisms for the MCNs. Once networks have their initial indicators bedded in they should look at developing others so that all areas of their service are being looked at. A review should be done at least once a year by the networks to indicators are still relevant. make sure their MCNs continue to develop specific indicator on transition to adult care through their Transition subgroups and taking into account the outcomes of the Transition: Making it Happen Workshop. In developing the transition indicator further links should be made, through the MCN Regional Managers, with the various programmes of work looking at Patient Centred care, e.g. Better Together and SGHD Patient Centre Delivery Group, to ensure experience learned from these areas of work can be passed on to the networks. Further training and support for the MCNs and NSD in the Model for Improvement and associated data analysis and presentation should be requested from the NHS Scotland Quality Improvement Hub. This report and supporting documentation from this project to be passed to appropriate Programme Managers in NSD for distribution to the networks as and when they are required. Date: 05/04/2011 Page 24 of 34

25 Appendix 1 - Steering Group Membership Name Title Adams, Julie Paediatric Patient Safety Programme Amor, Sally NoSPHN Coordinator Beattie, Jim Royal College of Paediatrics and Child Health Bisset, Michael Clinical Director, NHS Grampian Calderwood, Catherine Senior Medical Officer, Scottish Government Colquhoun, Lucy Head Children and Young People Specialist Services Team, Scottish Government Conacher, Ann ScotPHN Coordinator Dagge-Bell, Fiona Quality Improvement Scotland Doyle, Edward Clinical Director, RHSCE Farman, Pip NoSPHN Coordinator Forsyth, Stewart Medical Director, NHS Tayside Jamieson, Morgan (retired June Senior Medical Officer, Scottish Government 2009) Leitch, Jason Clinical Lead for Patient Safety and Quality, SGHD Mackie, Phil Lead Consultant, Public Health Network McGrogan, Paraic Consultant, Gastroenterology, NHS Greater Glasgow and Clyde Morrison, Donald Quality Improvement Scotland O Connor, Pat Patient Safety Agenda O Neill, Noelle NHS Highland, on behalf of the NoSPHN Smith, Louise (left 2009, replaced by Scottish Government Catherine Calderwood) Taylor, Sarah Director of Public Health, NHS Shetland Walker, Drew Department of Public Health Medicine Wallace, Iain Medical Director, NHS Greater Glasgow and Clyde Youngson, George (Retired, September 2010) Patient Safety Agenda and Royal College of Surgeons, Edinburgh Collins, Kathy Nursing and Quality Advisor, NSD Evans, Deirdre Director, NSD Winter, Mike Medical Director, NSD Chalmers, Jim (Project Team) Consultant in Public Health Medicine, ISD Clark, Claire (Project Team) Project Manager, ISD Martin, Kirsty (Project Team - left Data and Terminology Officer, NSD NSD, June 2009) Mathie, Lindsay (Project Team) Project and Information Manager, ISD Muir, Jennifer (Project Team) Data Development Officer, ISD Philp, Alastair (Project Team) Programme Principal, Women and Children Health (Seconded to NHS Scotland Quality Improvement Hub, based at QIS, October 2010) information Programme, ISD Steering Group Remit The Steering Group agreed to: provide advisory and strategic direction meet approx. every 2-3 months and receive updates from the project team provide input & expertise into work packages, e.g. comment on draft papers provide expertise to guide project direction, decisions and problem solving be available to give advice & expertise when needed (ad hoc input/direction into specific work packages) Date: 05/04/2011 Page 25 of 34

26 Appendix 2 - Project Board Membership Name Title McGrogan, Paraic (Chair) Consultant, Gastroenterology, NHS Greater Glasgow and Clyde McKay, Katherine Clinical Director, NHS Greater Glasgow and Clyde, Clinical Lead for Children and Young People, Scottish Government Collins, Kathy Nursing and Quality Advisor, NSD Chalmers, Jim (Project Team) Consultant in Public Health Medicine, ISD Clark, Claire (Project Team) Senior Information Analyst, ISD Mathie, Lindsay (Project Team) Project and Information Manager, ISD Muir, Jennifer (Project Team) Data Development Officer, ISD Philp, Alastair (Project Team) (Seconded to NHS Scotland Quality Improvement Hub, based at QIS, October 2010) Programme Principal, Women and Children Health Information Programme, ISD Project Board Remit The Project Board agreed to: be supervisory and provide governance meet every 2 months and receive updates from the project team supervise the project and ensure it remains on course to deliver the benefits described in the PID make key project decisions approve plans at project and then at phase level monitor progress, assess and resolve risks and issues assist with problem solving when necessary check that the project deliverables achieve the project objectives Date: 05/04/2011 Page 26 of 34

27 Appendix 3 Measurement Plan Form Measurement Plan Form Measure Title of your indicator e.g. Percentage of all patients who start treatment within 48hours of diagnosis Type Outcome Process Balancing Why is this Reasons why you want to measure this indicator? measure needed in our project? Operational Define each component of the indicator e.g. Time of Definition diagnosis Exclusions State any group of patients that should be excluded from the analysis e.g. patients who were previously prescribed a certain medication Useful Stratifiers If you want to look at your data in a subgroup e.g. age group, NHS Board, treatment centre Data Collection & Sampling Method Display List all data items required to be collected Who will collect the data? How it will be recorded and how often and if a sample is to be used? What are the numerator and denominators? How you plan to display the data e.g. run chart Goal What the target is e.g. 80% in 6 months Source Is this indicator is based on a guideline or standard? Date: 05/04/2011 Page 27 of 34

28 Appendix 4 Plan, Do, Study, Act Template Cycle #1 Meeting # Objective of Cycle Plan Note: Do: Start Date: End Date: Collect Data to Develop a Change Test a Change* Implement a Change** Short Objective of the Cycle: Questions: 1.? a. Prediction: 2.? a. Prediction: 3.? a. Prediction: 4.? a. Prediction: Test/Implementation Plan: What change will be tested or implemented? How will the change be tested or implementation be conducted (consider small scale early)? Who will run the test or implementation? Where: When will the test or implementation take place? Collect Data Plan (Usually required for all PDSA cycles): What information is important to collect? Why is it important? Who will collect the data? Who will analyze the data prior to Study? Where will data be collected? When will the collection of data take place? How will the data (measures or observations) be collected? Observations: Record observations not part of the plan: Did you need to modify the original Plan? If so, how? Begin analysis of data (graph of the data, picture) Study Questions: (copy and paste Questions and Predictions from Plan above and add Results. Complete analysis of the data. Insert graphic analysis whenever possible.) 1.? a. b. Prediction: Learning (Comparison of questions, predictions, & analysis of data.): 2.? a. Prediction: b. Learning: New Issues: Summary: Describe next PDSA Cycle; New Questions to Answer/Decisions made/action to be taken 1. Act Ad Hoc Contributors Recognize subject matter experts and others who have contributed to the learning Date: 05/04/2011 Page 28 of 34