Models of Child Health Appraised (MOCHA - A study of Primary Care in 30 European Countries): comparing eight exemplar conditions in the UK

This is a study which is being run by University of Surry along with the Royal Collage of General Practitioners (RCGP). This request for data from NHS Digital will contribute to the work package 5 of the The Models of Child Health Appraised (MOCHA) study. MOCHA is an EU-wide project led by Imperial College and funded through the Horizon2020 Framework Programme for Research and Innovation under the grant agreement number: 634201.

The overall aim of the MOCHA project is to appraise the existing models of primary child healthcare in Europe.

The MOCHA is divided into 10 work packages (WP) as follows:

WP 1. Identification of Models of Children’s Primary Health Care

This will coordinate the scientific work, be the interface with the country agents and the scientific analysts, and will identify the core basic models of primary care provision.

WP 2. Interfaces of Models of Primary Health Care with Secondary, Social and Complex Care

Covering both day-to-day referrals, and management of complex conditions, between primary and secondary care, and the collaboration between health and social care.

WP 3. Effective Models of School Health Services and Adolescent Health Services

WP 4. Identification and Application of Innovative Measures of Quality and Outcome

This WP will devise and apply a number of innovative measures of quality and outcome of child primary care models, based on concepts, analysis of available routine statistics.

WP 5 will assess the availability of large data sets, using learning from the TIRRE survey tool https://www.surveymonkey.com/r/tirre2 (developed as part of the 7th Framework TRANSFoRm project to assess the potential to link health databases) to create a set of common data descriptions and case definitions (ontologies). further details around TIRRE can be sourced below;

Jennings E, De Lusignan S, Michalakidis G, Krause P, Sullivan F, Liyanage H,

Delaney B. An instrument to identify computerised primary care research networks,

genetic and disease registries prepared to conduct linked research: TRANSFoRm

International Research Readiness (TIRRE) survey. J Innov Health Inform. 2018 Dec

31;25(4):207-220.

WP 6. Economic and Skill Set Evaluation and Analysis of Models

WP 7. Ensuring Equity for All Children in all Models

Equity across socio-economic, ethnic, and cultural divides, regardless of gender. How different health systems address these challenges will be considered, as will other triggers for inequality such as children in care, children from challenged families, and refugee and undocumented children.

WP 8. The Role of Electronic Records and Data to Support Safe and Efficient Models

WP 9. Validated Optimal Models of Children’s Prevention-Orientated Primary Health Care

This WP is an overarching outcome of the other WPs, drawing on the evidence collected by WP 1 and analysed by the specialist WPs 2-8. It will develop optimal patient-centered and prevention oriented primary child health care models emerging from the analyses in the other WPs, and seek public and stakeholder views.

WP 10. Dissemination

Dissemination will be active throughout the project, involving all Work Packages and many stakeholder interfaces.

The NHS Digital data used for Work Package 5 will not be used for any of the Work Packages outlined in the application.

Aim and purpose of this application -

This agreement is solely for WP5 of the MOCHA project which is being led by the University of Surrey. WP5 is the only work package that requires access to individual level data.

The aim of this study, which is part of WP5 is to analyse the effect of individual and structural health services factors on the antecedents and outcomes in eight key childhood disease areas between 2003-17. These are Asthma care, Epilepsy care, Care for children with diarrhoea and vomiting, Prevention of rickets, Vaccine preventable disease, Post-natal care, Treatment of depression in teenagers, Treatment of enuresis.

Antecedents are conditions which are present in the decade (i.e. past medical history) before the key conditions under study and may be associated with the key condition under study.

The University of Surrey will examine the following individual determinants using information from Royal College of General Practitioners (RCGP) Research Surveillance Centre (RSC) data

- Demographic characteristics – age, sex, Socio-Economic Status (SES)

- Medications prescribed

The University of Surrey will examine the following individual determinants using information from the HES data

- Antecedent conditions (i.e. past medical history)

The University of Surrey will examine the following structural health service factors using information from general practice websites, the General Medical Council and NHS Choices

- Practice list size

- Number of general practitioners

- Average number of years since general practitioners graduated from medical school

- Average number of qualifications for general practitioners

- Practice QoF/ P4P score

- Practice NHS choices star rating

The Article 6 and article 9 (2) (j) justification for this application relates to the processing of data necessary for the performance of a task carried out in the public interest, namely research to appraise existing models of primary child healthcare as part of the MOCHA project.

The University of Surrey will study the outcomes of these key conditions including hospitalisations from HES data, health services use from HES and primary care data, and Civil Registration Data (CRD) data. Linkage between primary care data and HES/ CRD data will allow the study to maximize the identification of morbidity and mortality as these outcomes may not be consistently recorded in the primary care record.

The cohorts being considered are;

1.The primary group of study will be those children under the age of 19 years who have received care in any of the following eight key childhood disease areas since 2003 until 2019 - Asthma care, Epilepsy care, Care for children with diarrhea and vomiting, Prevention of rickets, Vaccine preventable disease, Post-natal care, Treatment of depression in teenagers, Treatment of enuresis. This will include 644,000 children under 19 years of age who have received care in any of the eight key childhood disease areas.

2. up to 1.5 million household contacts of children who were identified in cohort 1 above with diarrhoea and vomiting who are registered between 1997 (when computerised records were available in the database) and 2019 with 164 general practices within the Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC) network.

The RCGP RSC database contains a pseudonymised field called the ‘household key’ which identifies all people living within the same household. It does not contain any information about the address. This ‘household key’ will be used to identify household contacts of children with diarrhoea and vomiting (D&V). Members of the same household who are at risk of D&V, namely those within 7 days of the presentation of the child to GP for D&V will be identified. It is estimated that there may be up to 1,500,000 household contacts of children with D&V.

3. Women of child bearing age between 10-69 years. It is estimated that there are 900,000 such women in the database. Ante-natal and early post-natal care will be studied in these women to understand the determinants of early preventative care for children in primary care. No attempt will be made to match women of child bearing age to their children, this cohort will not be linked to cohorts 1 or 2 above.

Purpose of the request –

The University of Surrey will study the key antecedents and outcomes of these key conditions in children registered with practices in the RCGP RSC network including hospitalisations from HES data, health services use from HES and primary care data, and Civil Registration Data (CRD) data. Thus requesting data for the whole of England and Wales relating to patients registered with RCGP RSC practices.

Linkage between primary care data and HES/ CRD data will allow the University of Surrey to identify antecedents conditions which are present in the decade (i.e. past medical history) before the key conditions under study and may be associated with the key condition under study. It will also maximize the identification of morbidity and mortality as these outcomes from these conditions that may not be consistently recorded in the primary care record. Currently this work is not possible using primary care datasets alone without linkage to NHS Digital datasets. These linked datasets will also help us to identify early adverse ante-natal and early child outcomes such as miscarriage in women of child-bearing age which are important to capture to understand the effect of preventative care pertaining to children in primary care, such as dietary advice, smoking cessation advice and routine antenatal checks.

The University of Surrey will use multiple regression analysis to look for associations between individual characteristics/ structural characteristics/ antecedents and key childhood disease outcomes. Thus we have requested individual pseudonymised data.

Organisations involved –

Imperial Collage London are the lead for the wider MOCHA Programme of research as an integrated programme of research projects which interlinked in order to answer the question “ how is primary care for children and young people operating in Europe and which aspects lead to best quality care?”. Imperial do not have any influence over the design , processing activities, decision making responsibilities over what data may be used in WP5 outputs or dissemination of data from WP5. Imperial will review aggregated data outputs only and oversee the academic outputs in terms of their contribution to the overall programme.

Work Package 5 (this application) is focused on Identification and Use of Derivatives of Large Data Sets and Systems to Measure Quality and had a number of discrete tasks including examining child health specific measures in primary care data sets where available in different countries. University of Surrey are the lead on WP5 alongside the Royal College of GPs (RCGP). For WP5 University of Surrey and RCGP are joint Data Controllers for this application and WP5. University of Surrey and RCGP as leads for WP5 in the MOCHA project will make the final determination of how the data from this agreement is used/analysed and how the results are disseminated. The RCGP Research and Surveillance Centre (RSC) is based at the University of Surrey. The University of Surrey has a contract with the RCGP to provide a surveillance, quality improvement and research platform through the RSC.

Apollo Medical Software Solutions, an approved third party provider has formal service agreements and service specifications with RCGP RSC and with individual participating GP practices to conduct data collection and secure web transfer. (Copies of these formal agreements and technical details were shared with NHS Digital in the last IGTK assessment and were deemed satisfactory, and are available to legitimate requests). Apollo will not have access to any data disseminated under this agreement.

No funders (Horizon 2020) will be involved in the analysis or have access to the data, they have no influence over the outputs or design of the study.

Only substantive employees of the University of Surrey will have access to the data and only for the purposes described in this agreement. All researchers who have access to the data will also have to have undertaken data governance training in accordance with the NHS Information Governance (IG) toolkit. The data will be used solely for the MOCHA project WP5. Imperial College will only have access to data which has been aggregated with small numbers suppressed in line with NHS Digital Guidelines.

General practices within the RCGP RSC network have been involved in disease surveillance for over 50 years. Over this period practices have had feedback about their data quality and many practices have been computerised since the late 1990s, allowing long-term outcomes to be studied.

Each unique patient within the RCGP RSC database is de-identified at source before data is extracted from individual practices using a computer generated patient ID. This de- identification of records includes production of a scrambled NHS number using pseudonymisation algorithm. Apollo Medical Software Solutions, an approved third party provider has formal service agreements and service specifications with RCGP RSC and with individual participating GP practices to conduct data collection and secure web transfer. (Copies of these formal agreements and technical details were shared with NHS Digital in the last IGTK assessment and were deemed satisfactory, and are available to legitimate requests).

The University of Surrey will send the hashed NHS numbers to NHS Digital. The three following flows of hashed NHS numbers will be undertaken

Firstly from the primary group of study - those children under the age of 19 years who have received care in any of the following eight key childhood disease areas since 2003 until 2019 - Asthma care, Epilepsy care, Care for children with diarrhoea and vomiting, Prevention of rickets, Vaccine preventable disease, Post-natal care, Treatment of depression in teenagers, Treatment of enuresis. This will include 644,000 children under 19 years of age who have received care in any of the eight key childhood disease areas

Secondly, up to 1.5 million household contacts of children with diarrhoea and vomiting who are registered between 1997 (when computerised records were available in the database) and 2019 with 164 general practices within the Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC) network.

Thirdly, data from women of child bearing age between 10-69 years. It is estimated that there are 900,000 such women in the database. No attempt will be made to match women of child bearing age to their children.

Data from women of child bearing age will also be used to examine the determinants of ante-natal and post-natal care in primary care. Women of child bearing age will be identified in the RCGP RSC database using the ‘pregnancy sliding window’ that has recently been developed and published in a peer-reviewed journal. This algorithm uses information about women between the ages of 10-69 years age. No attempt will be made to match women of child bearing age to their children in this particular sub-study.

The research team at the University of Surrey will not link with any record level data and there will be no requirements nor attempt to re-identify individuals from the data. The University of Surrey will undertake the following processing activities

• University of Surrey will identify the study patients for the three cohorts above from primary care records in the RCGP RSC practices and send the scrambled/hashed NHS numbers of the cohort under study to NHS Digital to link to HES/ Civil registration data. No other GP data will be sent to NHS Digital.

• NHS Digital will hash their NHS numbers using the same pseudonymisation algorithm

• NHS Digital will undertake data linkage via the hashed NHS numbers in both sets of data. This process has been used for previous projects linking different sets of data, and the linkage has been successful

• NHS digital extract all HES and CRD records for which there are matched primary care records

• NHS digital will send the extract of HES and CRD records with the hashed NHS number to the University of Surrey

• University of Surrey will link the HES and CRD records together with GP data from the primary care records from RCGP RSC practices with the same hashed NHS numbers

• The linkages to the cohorts will be done separately so each of the 3 cohorts will be sent in as separate files, linked by NHS Digital as separate cohorts and released as 3 separate cohorts.

Records for each study participant will when fully linked contain information from HES and CRD, together with information from RCGP RSC primary care practices.

Pseudonymised record-level HES data will be processed and stored at the University of Surrey. Patient level databases are held in the database server within the Research Group’s secure network. The Research Group’s dedicated secure network is sited behind a firewall within the University’s network. It is a standalone, independent network, all in-bounded connections are block, but out-bounded connections are allowed. All staff members of the research group working within the team base work from secure workstations or secure laptops with encrypted drive. Only substantive employees of the University of Surrey will have access to the data and only for the purposes described in this document. The data will be used solely for the MOCHA project WP5.

Each unique patient within the RCGP RSC database is de-identified at source before data is extracted from individual practices using a computer generated patient ID. The University of Surrey holds no identifiable data and only hashed NHS number. Linking data from University of Surrey for this project will not lead to or increase the risk of pseudonymised data becoming identifiable data. The data held at the University of Surrey is pseudonymised at the practice level using a non-reversible hash key.

The hashing of identifiable data for the Clinical Informatics and outcomes Research Group, at the University of Surrey if needed, is conducted by the Salt Service of the University of Surrey Central IT team, so that the holder of the pseudonymised data is separated from the service that holds the non-reversible hash key. This will not lead to risk of pseudonymised data becoming identifiable data.

Publicly available data about general characteristics of practices will be extracted from individual practice websites, the NHS choices website and the General Medical Council (GMC) register. This includes the practice list size, the percentage of children in the lowest IMD quintile, the total number of children registered with the practice, the total number of general practitioners (GPs) in the practice, the gender of GPs in the practice, the average number of years since their medical and specialist general practice qualifications, the average number of qualifications of GPs in the practice, and whether the practice was in an urban or rural location. Data about general practitioners will be aggregated and information about general practices will be anonymised to mitigate the risk of re-identification of practices and practitioners No details of individual general practices including practice name, address or postcode or individual general practitioners will be identified.

NHS Digital will hash their NHS numbers using the same pseudonymisation algorithm (SHA-512). NHS Digital will undertake data linkage via the hashed NHS numbers in both sets of data. This process has been used for previous projects linking different sets of data, and the linkage has been successful.

Records for each study participant containing information from HES and CRD, together with hashed NHS numbers will be sent to the University of Surrey. The study are interested in any subsequent hospital admissions and deaths of children who present with these conditions in primary care. Thus they are interested in HES records and deaths in these children even if they are over the age of 19 at the time of these subsequent records.

There will be no subsequent flows of data from the University of Surrey.

Each unique patient within the RCGP RSC database is de-identified at source before data is extracted from individual practices using a computer generated patient ID. The University of Surrey holds no identifiable data and only hashed NHS number. Combining/ linking data from University of Surrey for this project will not lead to or increase the risk of pseudonymised data becoming identifiable data. Linkage of two non-confidential datasets does not create a confidential dataset. A data protection impact assessment was completed on 12/11/2018. https://clininf.eu/wp-content/uploads/2018/11/DPIA-2018.11.26-signed.pdf

Publicly available data about practices will be included in this study. This data will be aggregated and anonymised to mitigate the risk of re-identification of practices and individuals. No information from single handed practices within the RCGP RSC network where information about the practice cannot be aggregated will be used for this study.

Pseudonymised record-level HES data will be processed and stored at the University of Surrey. Patient level databases are held in the database server within the Research Group’s secure network. The Research Group’s dedicated secure network is sited behind a firewall within the University’s network. It is a standalone, independent network, all in-bounded connections are block, but out-bounded connections are allowed. All staff members of the research group working within the team base work from secure workstations or secure laptops with encrypted drive. Only substantive employees of the University of Surrey will have access to the data and only for the purposes described in this document. The data will be used solely for the MOCHA project.

The Research Group has conducted a risk assessment of the physical security of the offices and servers where patient level data is kept.

The Research Group of Department of Clinical and Experimental Medicine at the University of Surrey has worked with routinely collected healthcare data in a number of research and evaluation projects over the last 15 years. The Research Group works within the Research and Information Governance

Outputs will include (but is not limited to) the following:

a. Reports

b. Submissions to peer reviewed journals

c. Presentations

d. Conferences

e. Dashboards

There will be a number of outputs by the end of the MOCHA project and two years beyond up to March 2022. These will include academic, scientific and professional groups and individuals; policy makers (both political and professional) involved in deciding future health policies; and bodies representing parents, children and young people.

Much of the dissemination will be at European level and in professional journals, but materials on the project web site (with which other sites will be encouraged to link) will be important, as will targeted national dissemination as recommended by country agents and some publications in selected lay outlets. There have already been a list of publications from the MOCHA team including WP5 which can be accessed from the MOCHA website. The results from WP5 including the results from this study using data from England will also feed into MOCHA conclusions in the final report about the existing models of primary child healthcare in Europe.

All data and outputs from this study will not be made available to any third parties except in the form of aggregated outputs with small numbers suppressed in line with NHS Digital Guidelines

Dissemination for MOCHA as a whole will be coordinated by WP10 and will be formative (disseminating the MOCHA project’s objectives and methods) as well as summative (disseminating the findings). University of Surrey will lead and control dissemination of results and data from WP5 and WP10 will oversee the academic outputs of WP5 in terms of their contribution to the overall programme.

The MOCHA project sees as its beneficiaries the children and families of Europe including the UK and the professionals who care for them currently through varied historically-based service models.

There will be a number of target populations for the dissemination activities by the end of the MOCHA project in 31/01/2019 and two years beyond. These will include academic, scientific and professional groups and individuals; policy makers (both political and professional) involved in deciding future health policies; and bodies representing parents, children and young people. Much of the dissemination will be at European level and in professional journals, but materials on the project web site (with which other sites will be encouraged to link) will be important, as will targeted national dissemination as recommended by country agents and some publications in selected lay outlets. There have already been a list of publications from the MOCHA team including WP5 which can be accessed from the MOCHA website.

The MOCHA project and its External Advisory Board include persons directly embedded in a number of key scientific and strategic European organisations including the World Health Organisation, Health Forum Bad Gastein, European Public Health Association, European Health Management Association, European Patients’ Association, European paediatric networks (such as the European Academy of Paediatrics, European Paediatric

Associations and European Confederation of Primary Care Paediatrics), Alliance for Childhood (with its network and regular European Parliament meetings) and Eurochild.

Additional key conferences, such as those of nursing associations at European level, will also be targeted, while the European Union for School and University Health and Medicine has offered collaboration.

All data and outputs from this study will not be made available to any third parties except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guidelines.

The dates for outputs from this study are from March 2015 until March 2022.

The wider MOCHA project and its External Advisory Board include persons directly embedded in a number of key scientific and strategic European organisations including the World Health Organisation, Health Forum Bad Gastein, European Public Health Association, European Health Management Association, European Patients’ Association, European paediatric networks (such as the European Academy of Paediatrics, European Paediatric Associations and European Confederation of Primary Care Paediatrics), Alliance for Childhood (with its network and regular European Parliament meetings) and Eurochild.

Additional key conferences, such as those of nursing associations at European level, will also be targeted, while the European Union for School and University Health and Medicine has offered collaboration.

MOCHA has a website and newsletter which is written in lay language along with press releases which are sent to media outlets including, inter alia, the BBC, the Financial Times, The Guardian, The Independent, The Times, The Daily Telegraph, and the New Statesman. As an example, a recent MOCHA paper was covered by The Sunday Telegraph https://www.telegraph.co.uk/science/2019/08/10/older-parents-may-not-know-child-has-adhd-better-absorbing-rowdy/

The MOCHA project sees as its beneficiaries the children and families of Europe including the UK and the professionals who care for them currently through varied historically-based service models. The project intends to give thorough scientific evidence of optimal models, tools to appraise quality and effectiveness locally, and evidence on how best to effect modernisation in a politico-cultural context. In identifying means of moving to optimal models of primary care delivery, including effective processes of implementation, it aims to stimulate achievement of more effective and efficient services, to reduce late diagnosis and sub-optimal care, and achieve better health in Europe for today’s children – tomorrow’s adults.

The MOCHA project addresses the variety of existing models of child health primary care provision in Europe – most noticeably the division between either paediatric primary care provision or general family practice provision – with little existing evidence as to comparative benefits. The MOCHA project will evaluate models of primary care for children, benefiting from the natural laboratory of the current extensive variety in Europe. Information on which structural determinants of these models of care influence child health outcomes. Using data from England, WP5 will provide data about which structural factors are important in determining child health outcomes in England.

The results from MOCHA will demonstrate the optimal model(s) of children’s primary care with a prevention and wellness focus, with an analysis of factors which facilitate adoption, and indications for policy makers of both the health and economic gains possible.

The dissemination actions from MOCHA led by WP10 including the results from WP5 will include raising awareness of these optimal model(s) though policy, professional and stakeholder forums and use of different media. Scientific and policy-oriented results will be compiled in a series of reports including models of primary child health care, the innovative and other tools developed and applied, and statements of effective implementation and change management.

Using data from England, WP5 will provide data about which structural factors are important in determining child health outcomes in England. This application for WP5 of the MOCHA project will specifically identify factors which are important for eight key childhood disease areas namely Asthma care, Epilepsy care, Care for children with diarrhoea and vomiting, Prevention of rickets, Vaccine preventable disease, Post-natal care, Treatment of depression in teenagers, Treatment of enuresis.

The dissemination of work from MOCHA including work from this study will include creation of electronic and printed versions of the final report and recommendations, and the preparation of a lay accessible public version via the project portal and linkage to other key websites, as well as by direct dissemination. Also a final large audience conference to promote all the findings on better child primary health models and the effective deployment will engage with a large lay and professional audience. Every opportunity will be taken, within the project resources, to engage in workshops and presentations at professional and stakeholder high-level events to enrich and validate the emergent processes and findings. Conversely, calls for materials for strategic events will be monitored to ensure that there is an appropriate project presence whenever possible. Links will be encouraged between our portal and all the websites of our stakeholders and all organisations (European and national) that might be interested in the results of the project.

The public and legitimate interest of the MOCHA project is that it will examine in detail and from relevant dimensions a question which should not remain unanswered – namely what is the most effective model of provision of primary health care for children, an issue which affects not just children but is an essential underpinning to the justified European drive for healthy ageing, and to address the growing crisis of the rise in avoidable chronic illness through non-communicable diseases. It will develop tools relating to quality measurement, skills requirements, economic and financing frameworks, and e-health support to modern models of child health care. It seeks to ensure equity in these future optimised models of care, and also to ensure that complex needs, and complex conditions such as mental health, are adequately supported by the same models which may be optimal for the majority. This wide ranging approach will lead to a far more robust, justifiable and sustainable set of results and deliverables than a one dimensional project which omitted many countries which would have limited robustness and confidence. MOCHA addresses a research issue which has been neglected for at least 25 years, and whose results should endure for a similar period.

The intent is to provide the first ever full analysis of the different models of child primary health care in Europe, together with other first contact services such as school health and adolescent direct access services. The analysis will use proven tools where they exist, but will develop new tools in areas such as outcome measurement where new data sources or analytic techniques are available to be harnessed.

The project will cover all first health care contact services, together with population programmes, secondary care interface, and EHR support issues. It will recognise that optimum models need to be flexible to accommodate local factors and needs within countries. It will emphasise the importance of models being able to accommodate the needs of all children equally according to need, including those with long-term conditions, complex needs, or factors militating against health equality. It will produce evidence of the importance of appropriate modern records and information systems to operate the models of care effectively. Using data from England, WP5 will provide data about which structural factors are important in determining child health outcomes in England.

The MOCHA project will result in the following actions/changes/decisions as a result of its outputs:

•provide a description of the different models of children’s primary care in Europe;

•devise a range of innovative quality and outcome measures, using statistical and electronic data;

•include children with special needs, are a cause for concern, or have complex needs;

•apply innovative quality measures, and economic assessments, to the models;

•obtain stakeholder experiences, and assess cultural and political contexts;

•assess the current and potential future effect of the models on health inequalities among children;

•model the workforce alternatives of different structures;

•consider models of electronic records as an integral part of a modern effective system;

•obtain stakeholder feedback; and integrating this evidence thus

•identify optimal models of patient-centred, prevention oriented, efficient, resilient, safe and sustainable child health system provision, raise awareness of the issues, and disseminate the evidence to stakeholders and policy makers, to facilitate their realisation in Europe, underpinned by identification of the health and economic benefits potentially to be gained.

MOCHA would develop focussed innovation in a number of respects, and place these results into the public and scientific domain in a way which would seek to stimulate their widespread application. Indeed, the very objectives of seeking to bring children’s primary health care support to the fore, and to model the structures, mechanisms, and effects of this are innovative yet of profound societal importance.

First, the modelling of primary care delivery for children is itself ambitious and innovative. The paediatric associations of Europe met in November 2013 to debate the critical lack of understanding of the different philosophies and structures of primary health care provision for children in Europe, and to consider how to address what was considered to be an urgent and indefensible lack of scientific knowledge. The creation of models at the core of this proposal seeks to address that need, and is appropriately ambitious is it includes study of every European Union and European Economic Area country (except Lichtenstein which is not involved in Horizon 2020).

This modelling will be both in words, through analysis and narrative of policies, funding, staffing models, and regulation; and also in construction of technical models, as Unified Modelling Language (UML) models will be created. The related analyses will be linked to both these forms of model. This will also further the models’ understanding and use, as there will be products related both to general stakeholder requirements but also to technical modellers.

Secondly, coverage of the full spectrum of childhood, but recognising key stages of transition through the early life course – new born, infancy, pre-school years, school years and increasing autonomy and health behaviour development, and adolescence – is ambitious, though fully in line with the policy of the World Health Organisation Regional Office for Europe and its European Strategy for Child and Adolescent Health and Development 1. Primary health care services for children must be considered as a whole, since this is their legal and professional framework and thus their model, but the needs of children related to health, and thus the means of providing services, need significant variations of sub-model by developmental stage.

Thus MOCHA considers in particular the variations on models of school health services, and in adolescent direct access services, together with recognition that Accident and Emergency services, and direct public health help lines where available, are adjuncts to core primary care services and compensate their deficiencies, and so must be included as adjuncts to the core model. In each case the project analysis progresses from identification and description of current models to recommendations on the benefits of optimum models.

Thirdly, MOCHA is innovative in recognising that though for the majority of children their interface with healthcare is straightforward, for a proportion of children this is not the case. Thus MOCHA studies the interface of core models of children’s primary health care with the needs of children with complex conditions or complex needs. Too often complex needs are overlooked when studying population-wide systems, disadvantaging a group of children with greatest need, while separately complex conditions, or complex needs, are studied in isolation. MOCHA includes experts in Europe and the USA already involved in modelling children’s complex care, to ascertain the optimal interface models with the host primary care systems – both to aid consumer-orientation and efficiency across the many agencies with primary care often having a core but poorly defined role, but also to ensure that basic preventive health delivery and treatment of inter-current childhood conditions are not overlooked in the focus on the special condition. Similarly other complex needs, such as those where children need social care support relating to health issues, are in the care of the state or are resident in institutions, or face other complex conditions such as a parent with mental illness or households where a child is also a carer, is considered and interface models devised. Again, this is innovative work in its own right yet is a core feature of MOCHA, as models of primary care which do not handle complexity would fail to meet the needs of all children, or the Call’s requirement for patient-centeredness, efficiency, and resilience.

Fourthly, to achieve this analysis and develop new, or improve on existing, models for health systems, in order to make these systems more patient-centred, prevention oriented, efficient, resilient to crises, safe and sustainable, MOCHA includes work packages, including WP5 which will develop new and innovative measures of quality and outcome, drawing both from published statistical data and from analysis of the increasingly available large data sets and registers, collaborating with those national data systems’ custodians to as to ensure that data are analysed in-country by those already authorised in each setting as locally trusted – though applying agreed project-wide questions. The work packages addressing this innovation in measurement of quality and outcome will identify clinical concepts which can be translated across data sources and systems as well as across models, develop and use ontologies to identify the agreed tracer conditions and clinical concepts, and study causal relations analysis though use of Structural Equation Modelling. This development of analytic measures will be innovative and ambitious in itself, and more so when applied to different primary care models, as well as different Member States’ systems of recording, of data management, and of statisticals systems. However, while ambitious it is also seen as feasible, being led by European experts in these fields.

Fifthly, MOCHA does not overlook health workforce issues, particularly in stringent economic times but also recognising that a model may not necessarily need to be medically dominated, and should have a preventive and patient-oriented philosophy. Therefore, the project will have a significant focus on workforce and skills mix, and on funding patterns. These two aspects are distinct, but inter-linked. The variety across Europe will provide a natural laboratory function. Different current national systems allocate different functions and responsibilities to different professions, while at the same time there is no European training standard, nor common agreed educational objectives, for doctors practicing paediatrics and child health in primary care, for nurses working with children in primary care or in the community, for school nursing or other school health staff, or for health professionals receiving children in Accident and Emergency settings – and indeed there is little modern evidence on which to base such standards. But this set of issues also interlinks with funding patterns, and with remuneration, charging and billing systems, which are often based on professions and on medical or organisational models. Thus these two aspects will be studied in their own right to produce intrinsic findings, but will also be a key input into the global objective of the project to recommend new, improved, sustainable models.

Sixthly, MOCHA is ambitious and innovative, but necessarily so, in linking the study of opportunities for support of modern effective primary care models by electronic records. Electronic records and e-health should not merely automate and digitise older methods of working and care delivery; conversely, now models which are more efficient and effective, and more personalised, may be possible when enabled by e-health. However, Europe has a poor track record in developing and applying electronic recording methods in child health. The lead of the first implementation in Europe over 50 years ago has been lost, while in recent developments the needs of children for specific development-based assessment and recording is all too frequently lost in the rush to generic systems inevitably based on the needs of adults. MOCHA therefore contains a work package specifically focussing on this issue, and with the intent of identifying the best future model of IT support to children’s primary health care models.

Seventhly, the proposal is ambitious, but in line with the call, in involving a wide range of stakeholders. MOCHA recognises and seeks to incorporate the

separate, distinct, and important views, and requirements, of three broad types of stakeholder –politicians and policy makers who decide what model to implement; professional interests including the different health professions but also health system organisations who have to bring to life such models efficiently and effectively; and civil society groups, including health-specific and young people’s groups, since the core function of children’s primary health care models is to support and promote the health of every child in Europe. Each of these stakeholder groups has views and interests, and each have their own drivers for progress and their own instincts for conservatism and the status quo. MOCHA is seeking to engage with a wide range of each of these types of stakeholder – through the External Advisory Board, through work package strands and the experts leading these, through the country agents in each country, and above all through an active dissemination policy which will seek interaction with key events and networks for each type of stakeholder – such interaction has already been requested by several key organisations.

The results of MOCHA will generate the first ever set of interlinked models for proven optimum delivery of primary health care for children, linking also to the issues of school health services, adolescent direct access services, and inter-linking with models of complex care and for complex needs extending beyond health, and showing resource feasibility including professional and skill mix. The methods will also extend the state-of-the-art of health system research, by developing new analyses of quality and outcome, as well as the potential optimal future roles and methods for use of e-health, and for exploitation of large and ‘big’data sets, relating to ensuring safe and effective preventive-orientated services for children. It will also stretch the current state-of-the-art in seeking to engage with the three stakeholder interests of policy makers, professions, and civil society groups (including young people themselves).

Yielded Benefits is not a requirement for new applications.