EHEALTH VISION AND STRATEGY SEPTEMBER 2013

Transcription

1 EHEALTH VISION AND STRATEGY SEPTEMBER 2013

2 In this document, unless specifically indicated otherwise, any reference to the care of children, young people and/or their families broadly covers the unborn child, the child as it grows until adulthood, and the family and/or care environment the child is brought up in. It also includes individuals who may be affected by domestic or family violence, sexual assault and child physical abuse and neglect.

3 CONTENTS Foreword 4 Executive summary 1 Introduction 6 the Vision 11 Current State 13 Business needs 18 The way forward 24 Implementation 33 Appendices 39

4 FOREWORD NSW Kids and Families has a vision for a future where the intelligent use of information, applications and technology helps drive improved health outcomes for children, young people and families of NSW. The World Health Organization defines ehealth as the combined use of electronic communication and information technology in the health sector. In more practical terms, ehealth is the means of ensuring that the right health information is provided to the right person at the right place and time in a secure, electronic form for the purpose of optimising the quality and efficiency of health care delivery. Health services for children, young people and families in NSW are provided in a many locations and in different settings hospitals, community clinics, school and home. This complicates coordination of care across the system, and can make it difficult to provide person-centred or integrated care as there is limited visibility of care given for both practitioners and policy makers alike. As children grow up and interact with the health system their cumulative clinical history tells health professionals, researchers and policy-makers a story which in turn informs care and service design. However, the mobility of our population and the number of different information systems that capture this story often mean that information is fragmented or unobtainable. Information technology provides multiple, as yet untapped, opportunities for both providing, supporting and understanding the health and wellbeing of children, young people and families. This document provides the blueprint for delivering on that potential. We invite you to consider your own role in empowering children, young people and families through the improved use of information management and technology. Joanna Holt Chief Executive NSW Kids and Families Greg Wells Chief Information Officer Healthshare NSW

5 01 EXECUTIVE SUMMARY 11

6 1 EXECUTIVE SUMMARY 1.1 BACKGROUND NSW Kids and Families will provide leadership to the NSW health system and partner with its stakeholders to champion outstanding health, wellbeing and healthcare for all children, young people and families and reduce the health impact of family and community violence, child abuse and neglect. In collaboration with healthcare providers and key policy partners NSW Kids and Families will: embed evidence based care; inform and share; connect care; inspire innovation; support action; and advise and guide. In doing this we will consider the following dimensions of care: healthcare continuum geographical continuum life course continuum population intersections NSW Kids and Families recognise that information management, ehealth and other applications and technology will play a major role supporting our goals across all these dimensions. The World Health Organization defines ehealth as the combined use of electronic communication and information technology in the health sector. In more practical terms, ehealth is the means of ensuring that the right health information is provided to the right person at the right place and time in a secure, electronic form for the purpose of optimising the quality and efficiency of health care delivery. NSW Kids and Families has a vision for a future where the intelligent use of information, applications and technology helps drive improved health outcomes for children and families of NSW. This future includes ehealth systems providing reliable, accurate and comprehensive data to support the evidence base for continuous improvement: where information will inform best practice and allow the monitoring and evaluation of services that impact on the health of mothers, children, young people and their families. From the end-user perspective, the vision for the ehealth system is that it should be seamless, fully integrated with clinical tasks, and reduce the burden of recording information by enabling information to be reused for multiple purposes. Delivering our vision requires an ehealth system that meets the needs of children, young people and their families in a manner that integrates and streamlines care for children and their families across the state, that provides standardised data to support transparency of service delivery and continuous improvement, that supports best practice through education guidance and decision support and that supports preventative care models such as screening and protection from harm. 1.2 CURRENT POSITION Health services for children, young people and families in NSW are provided in many locations and in different settings: hospitals; community clinics; schools; and in the home. This complicates coordination of care across the system, and can make it difficult to provide person-centred or integrated care as there is limited visibility of care given for both practitioners and policy makers alike. 12

7 As children grow up and interact with the health system their cumulative clinical history tells health professionals, researchers and policy-makers a story which in turn informs care and service design. However, the mobility of our population and the number of different information systems that capture this story often mean that information is fragmented or unobtainable. Information technology provides multiple, as yet untapped, opportunities for both providing, supporting and understanding the health and wellbeing of children, young people and families. NSW compares favourably in terms of ehealth system capability with the most advanced health systems in the world, and there are many ehealth systems that are used in NSW to support the provision and management of care of children, young people and their families. These systems fall broadly into two categories: 1. Clinical Systems, including: generic systems, which apply across much of the health system, such as Patient Administration Systems, GP systems, laboratory and radiology systems, community care systems and the Electronic Medical Record; specialist systems that are relevant to caring for pregnant women, children and young people, such as that used in obstetrics care; local bespoke systems including home built databases which are used by individual clinicians or small numbers; planned systems that are likely to be relevant to the group, such as the systems that will be used for Electronic Medication Management; external multi-agency systems that support care across different agencies, where information sharing is permitted; and 2. Corporate systems that are more oriented to the non-clinical aspects of healthcare delivery. The systems most relevant to the care of children, young people and their families are: Electronic Medical Record (EMR) systems, which provides patient administration, results and ordering, clinical reporting, and discharge documentation across NSW, and is currently undergoing extension to include clinical documentation; GP and community health systems, which support care in the primary and community sectors including clinical documentation, reporting, referrals and patient administration; maternity systems, which support obstetrics and maternity care; and HealtheNet, which will provide a State-wide shared health record linked to the National personally Controlled Electronic Health Record (NeHR or PCEHR), National Health Identifiers Service and National Health Services Directory. 1.3 AREAS FOR IMPROVEMENT The consultation around this strategy revealed five overarching themes where ehealth services could be improved (table 1): 1. Sharing information across sectors over time to support integrated care; 2. Identification and support of individuals and families at risk; 3. Improved access to, and maturity of, clinical and other information systems; 4. Providing information to support policy development and evidence-based care; and 5. Providing a framework for clinical engagement and information governance. 13

8 Table 1: themes and opportunities for ehealth The five themes have been used to identify of a number of key solutions that will support the NSW Kids and Families vision (Figure 1). Figure 1: themes and key ehealth solutions 14

9 These key solutions are: 1. We will invest in a world class Maternity EMR (electronic medical record) to support the delivery of care during the antenatal, birthing and post natal period. 2. Every new born will have an integrated electronic Child Health Record to monitor their health, growth and development between settings and over time. This will be the foundation of the Personally Controlled ehealth Record. 3. We will invest in using creative approaches including multi-media & mobile technology to deliver relevant and accessible health information that will empower consumers to make informed choices about their own health and wellbeing. 4. We will design and implement a suite of complementary and integrated systems to better inform and connect the circle of providers who respond to sexual assault, child abuse, neglect and family and domestic violence. 5. We will develop standards and tools to provide information to drive policy development and improvements in clinical practice. 1.4 DELIVERING THE STRATEGY NSW Kids and Families will work with providers, NSW Ministry of Health, HealthShare and the Pillars to advocate for resources and attention to be focussed on priority solutions for children, young people and families. The implementation roadmap (figure 2) includes activities and systems that are planned for implementation over the next 3 years, and indicates broadly which are funded and which will require additional funding. However, definitive resource and cost estimates will be subject to further review. Those projects and systems that are not funded will be subject to the development and approval of business cases. Figure 2: implementation road map 15

10 02 INTRODUCTION

11 2 INTRODUCTION 2.1 NSW KIDS AND FAMILIES Alarmingly, the current generation of children is believed to be the first generation of children in history that may have a lower life expectancy than their parents and this is due to a range of factors. NSW Kids and Families has been established to lead NSW Health s efforts to address a number of issues relating to the health and wellbeing of children and young people in NSW: 1 There are almost 100,000 babies born in NSW every year and currently around one fifth (1.4 million) of the NSW population are under the age of 15. Most children and young people in NSW are healthy. However, many suffer from injury, trauma, or acute and chronic illness which may hinder their ability to grow and develop to their full potential. Over half a million children visit a NSW Emergency Department every year. For many, this visit will not be their first or last and some may have travelled a long way with their families for access to basic health services. Of those children and young people hospitalised, 17% may have avoided hospitalisation if earlier action had been taken to prevent or treat the health condition. Research suggests that one in three Australian women have experienced physical violence since the age of 15, and nearly one in five have experienced sexual violence. It is estimated that around one in four girls and one in six boys experience child sexual assault by the age of 18. Many more experience emotional and physical abuse and neglect or experience household violence and dysfunction the silent epidemic. Trauma of this nature has a lasting, and often irreversible, impact on a child s brain development. We also know that around 20% of NSW children are developmentally vulnerable in one or more domains as assessed by the Australian Early Development Index. We know that early engagement with antenatal care is critical and, although some 75% of NSW mothers now commence antenatal care in their first trimester, over 25% still report drinking alcohol during their pregnancy and 11% continue to smoke. Only 16% of mothers exclusively breastfed their baby to six months of age. While there have been significant improvements in Indigenous outcomes under Closing the Gap initiatives, especially in reducing infant mortality, national indicators still show significantly worse maternal and infant health outcomes for Indigenous compared to non-indigenous populations. A growing number of our young folk engage in behaviours that jeopardize not only their current state of health, but often their health for years to come. We know that a healthy diet and sufficient physical activity are critically important, yet over 20% of our children and young people are overweight or obese. More than 16% report consuming alcohol in the previous week. It is estimated that nearly two-thirds of premature deaths and one-third of the total disease burden in adults are associated with conditions or behaviours that began in their youth, including: tobacco use, a lack of physical activity, unprotected sex or exposure to violence or neglect. Research suggests that two thirds of children in out-of-homecare in NSW have at least one physical health complaint and almost three quarters, a mental health or behavioural problem; these conditions are often not recognised or are poorly managed. NSW Kids and Families will provide leadership to the NSW health system and partner with its stakeholders to champion outstanding health, wellbeing and healthcare for all children, young people and families and reduce the health impact of family and community violence, child abuse and neglect. In collaboration with healthcare providers and key policy partners we will: 1 NSW Kids and Families 2013 Manifesto 7

12 EMBED EVIDENCE-BASED CARE: Research, develop and support the implementation of evidence-based policy, standards, guidelines, best practice programs and care pathways that reduce health risk and improve the quality and continuity of healthcare delivery. INFORM AND SHARE: Bring together data and knowledge about what works and share it with those who can influence policy or practice to reduce harm and support improved health outcomes. CONNECT CARE: Broker strong connections between both policy makers and healthcare services and provide tools and guidance to better coordinate and integrate care journeys. INSPIRE INNOVATION: Stimulate new ways of thinking and working that centre on the child and their healthy growth and development but take into account the diverse nature of the families and communities within which they live. SUPPORT ACTION: Build the capacity of healthcare service providers, Communities and families to promote and protect the health and wellbeing of children and their caregivers and support uptake of effective programs and cost-effective models of healthcare delivery. ADVISE AND GUIDE: Provide expert advice to governments and healthcare providers regarding system performance and capability and the resources and strategies required to improve health outcomes for children, young people and families. In doing this we will consider the following dimensions of care: HEALTHCARE CONTINUUM: Considering prevention and screening, early intervention, primary healthcare, and hospital and specialist care and the transitions between. GEOGRAPHICAL CONTINUUM: Considering Rural and remote, regional, metropolitan and urban. LIFE COURSE CONTINUUM: Considering Mother and baby, infant to child, adolescent to young adult, and a safe and nurturing family life. POPULATION INTERSECTIONS: Considering Aboriginal and Torres Strait Islander, culturally and linguistically diverse, children with a disability and lesbian, gay, bisexual, transgender and intersex populations NSW Kids and Families recognise that information management, ehealth and other applications and technology will play a major role supporting its goals across all these dimensions. 2.2 EHEALTH The World Health Organization defines ehealth as the combined use of electronic communication and information technology in the health sector. In more practical terms, ehealth is the means of ensuring that the right health information is provided to the right person at the right place and time in a secure, electronic form for the purpose of optimising the quality and efficiency of health care delivery. In developing this strategy, NSW Kids and Families has considered needs beyond the traditional definition of ehealth to include services that would support inter-agency collaboration beyond health. NSW Kids and Families consider that ehealth should be viewed as both: as a key enabler and driver of improved health outcomes for all mothers to be, children and families; and the essential technology underpinning information exchange between all participants children, families and service providers. Thus, ehealth can: 1. support the delivery of healthcare, for health professionals and health consumers, through the internet and other technologies (e.g. via messaging and telehealth services); 2. make information and records accessible within and across organisations to inform care (e.g. through shared health records and electronic medical records); 3. release information and data to evaluate and improve services, inform population health, monitor inequality, plan services and workforce strategies; 4. enable access to knowledge that can be used to inform decisions, guide staff and support education and training of those involved with care; and 5. streamline and embed best practices in care services to reduce waste and improve outcomes. 8

13 2.2 TRENDS IN INFORMATION TECHNOLOGY The way we all experience information technology has changed radically over only the past few years, and this change is likely to continue unabated as long as there is consumer demand for faster, better, cleverer, more intelligent and more tailored and more useful solutions. Building off the social media revolution, industry attention has turned to consider the way big data can be used to tailor and personalise mobile applications to enhance and integrate with individual customer s life experience. Examples of this include: Social networking: Facebook has 800 million members and Twitter hosts 500 million tweets per day; Crowd sourcing: where the answer comes from the population not the expert (because if the numbers are large enough the don t knows balance out leaving the correct answer behind); The advent of the Cloud, which can store Big Data ; and the role of mobile devices and Applications to access and process this information to create a personalised experience; Health organisations tend to be more conventional and slower on the uptake of new services, which is more reflective of the complexity of health care delivery and the criticality of maintaining consumer confidence in privacy and safety, than reflective of a lack of enthusiasm. Having said this there are now a multitude of mobile applications and other information services provided by health organisations for both health care professionals and for consumers. Alongside health organisation systems there is a plethora of innovative information resources and solutions to support both professionals and consumers. One interesting example is Patients Like Me. This patient-driven health website leverages social media approaches to connect patients suffering from similar conditions. Consumers get value from the system by sharing how they feel each day and communicating with people who they can relate to. Data collected from the system has become a powerful predictor of treatment efficacy and patient outcomes. Another example is Patchwork. This connects carers and providers who care for individual clients so that they can share key information and concerns. This system aims to help indentify children at risk and allow intervention early to prevent harm. 2.3 EHEALTH STRATEGY This ehealth strategy has been developed by NSW Kids and Families in collaboration with providers of child health and wellbeing services across NSW (Appendix 1), and with HealthShare NSW, which provides State-wide ehealth systems and services. The strategy will be an evolving document with annual reviews by NSW Kids and Families Executive to ensure that the content remains up to date with a rapidly evolving field. The strategy is set out as overleaf. 9

14 SECTION 1 SECTION 2 SECTION 3 SECTION 4 SECTION 5 SECTION 6 SECTION 7 SECTION 8 EXECUTIVE SUMMARY provides a condensed version of the strategy for executives and others who need to know the principles and outcomes but not the detail. INTRODUCTION (THIS SECTION) provides the background to the strategy and why it is needed. THE VISION sets out NSW Kids and Families vision for a future state where ehealth supports the health and wellbeing of children in NSW. CURRENT STATE (HOW THINGS ARE) summarises available information with regard to: current care provision for children and their families, ehealth systems that support the care of children and their families and areas for improvement in ehealth. BUSINESS NEEDS (WHAT IS NEEDED) outlines the needs of the child, the needs of care providers and the needs of the health and care system. THE WAY FORWARD describes potential solutions and activities based on identified business needs. IMPLEMENTATION ROADMAP sets out the broad timeframes, roles and responsibilities for implementation of the identified solutions and activities. APPENDICES A. Glossary of terms B. Stakeholders consulted C. Current systems 10

15 03 The THE VISION vision 11

16 3 THE VISION 3.1 THE EHEALTH VISION Health services for children, young people and families in NSW are provided in a many locations and in different settings: hospitals; community clinics; schools; and in the home. This complicates coordination of care across the system, and can make it difficult to provide person-centred or integrated care as there is limited visibility of care given for both practitioners and policy makers alike. As children grow up and interact with the health system their cumulative clinical history tells health professionals, researchers and policy-makers a story which in turn informs care and service design. However, the mobility of our population and the number of different information systems that capture this story often mean that information is fragmented or unobtainable. Information technology provides multiple, as yet untapped, opportunities for both providing, supporting and understanding the health and wellbeing of children, young people and families. NSW Kids and Families has a vision for a future where the intelligent use of information, applications and technology helps drive improved health outcomes for children, young people and families of NSW. This future includes ehealth systems providing reliable, accurate and comprehensive data to support the evidence base for continuous improvement: where information will inform best practice and allow the monitoring and evaluation of services that impact on the health of mothers, children, young people and their families. From the end-user perspective, the vision for the ehealth system is that it should be seamless, fully integrated with daily clinical tasks, and reduce the burden of recording information by enabling information to be re-used for multiple purposes. 3.2 OBJECTIVES OF THE EHEALTH VISION AND STRATEGY Delivering this vision requires an ehealth system that meets the needs of children, young people and their families in a manner that integrates and streamlines care for children and their families across the state, that provides standardised data to support transparency of service delivery and continuous improvement, that supports best practice through education guidance and decision support and that supports preventative care models such as screening and protection from harm. Fundamentally, the ehealth strategy will support clinical outcomes and improvement in business processes through using technology as an enabler. These aims are not unique to the delivery of care to children, young people and their families. There is alignment with the broader aims of the ehealth system for other areas of care. As such the strategy needs to consider existing State-wide and national ehealth initiatives and leverage or influence these where appropriate. The strategy also recognises the need for innovation and local ownership, as well as standardisation, by providing individual care providers and care provider organisations with the ability to take different approaches where appropriate. The strategy has therefore set out to: ensure ehealth goals are driven by the needs of children and young people, cares and health providers and the health system as a whole; establish clear links with existing NSW and National ehealth initiatives and identify any gaps; and outline NSW Kids and Families three year roadmap for ehealth. 12

17 04 CURRENT STATE (HOW THINGS ARE) 13

18 4 CURRENT STATE (HOW THINGS ARE) 4.1 CURRENT CARE PROVISION FOR CHILDREN AND THEIR FAMILIES Services to children, young people and families in NSW are provided in a large number of settings in many different ways. In the NSW health sector, these include, but are not limited to, online services, acute inpatient care, primary care, community health services and community based services, such as universal health home visiting. This distribution of services, along with physical geography and the distribution of human and physical resources, constrain the delivery and coordination of care across the system. This in turn makes it more difficult to provide integrated care for individuals, or to provide a holistic approach to care delivery. The distributed health care system has a number of implications for ehealth: a large number of discrete silos of information; barriers to the effective sharing of information between health care participants; and challenges when trying to understand and evaluate what is happening in the health care system. In addition, the NSW health sector in general faces several increasingly important challenges in sustaining high standards of health outcomes for all consumers, including children, their families and carers. These include: increasing incidence of chronic disease, affecting children and their families; increasing consumer demand for more costly, complex and technologically advanced procedures; and significant differences between the health outcomes for advantaged and disadvantaged, particularly Aboriginal and Torres Strait Islander people. Stakeholders are also concerned there is a need for greater clinical training, continuous professional development, and access to knowledge and decision support tools for clinicians, and for children, young people and families or carers who are capable, authorised and motivated to become engaged in their own care. 4.2 EHEALTH SYSTEMS THAT SUPPORT THE CARE OF CHILDREN AND THEIR FAMILIES NSW compares favourably in terms of ehealth system availability with the most advanced health systems in the world, and there are many ehealth systems that are already used in NSW to support the provision and management of care of children, young people and their families. These systems fall broadly into two categories: 1. Clinical Systems, including: generic systems, which apply across much of the health system, such as Patient Administration Systems, GP systems, laboratory and radiology systems, community care systems and the Electronic Medical Record; specialist systems that are relevant to caring for pregnant women, children and young people, such as that used in obstetrics care; local bespoke systems including home built databases which are used by individual clinicians or small numbers; planned systems that are likely to be relevant to the group, such as the systems that will be used for Electronic Medication Management; external multi-agency systems that support care across different agencies, where information sharing is permitted; and 2. Corporate systems that are more oriented to the non-clinical aspects of healthcare delivery. Existing systems are listed in Appendix C. 14

19 The systems most relevant to the care of children, young people and their families are: Electronic Medical Record (EMR) systems, which provides patient administration, results and ordering, clinical reporting, and discharge documentation across NSW, and is currently undergoing extension to include clinical documentation; GP and community health systems, which support care in the primary and community sectors including clinical documentation, reporting, referrals and patient administration; maternity systems, which support obstetrics and maternity care; and HealtheNet, which will provide a State-wide shared health record linked to the national Personally Controlled Electronic Health Record (NeHR or PCEHR), National Health Identifiers Service and National Health Services Directory. In NSW the Cerner Corporation 2 is the predominant provider of EMR systems. The Cerner EMR is being extended to include medications management, clinical documentation, ehealth messaging (e.g. discharge summaries) and to support community based health services including child and family health. Orion Hospital 3 is the EMR system of choice for Hunter New England Local Health District (LHD) and Justice Health. The community health information system called CHIME is the Community Health EMR system for a number of LHDs and is an EMR that supports care planning, assessments, patient management and reporting. LHDs who don t have a community system currently have a choice of CHIME or Cerner based systems. The Meridian Health maternity EMR, ObstetriX, 4 is used in all LHDs except South West Sydney LHD and Sydney LHD. The system supports all pre-natal and maternity care from pre-natal visits and booking-in through labour and birth, discharge and postnatal care. Over half of the electronic submissions to the Perinatal Information Collection (PDC) originate from ObstetriX. Sydney and South Western Sydney LHDs are investigating Cerner Maternity solutions, with a view to building the maternity record into the Cerner EMR system. The consultation around this strategy identified priority areas for development with regards to obstetrics care and maternity, and more detailed information is provided in a companion paper to the strategy titled Obstetric Care. HealtheNet is a State-wide approach to improve the sharing of information between local health districts and NSW Health and external providers, to improve the ability for information to be shared to both support and better manage care across settings and organisation. This has not been fully implemented across the state. It currently provides access to information such event summaries, discharge summaries, admission and discharge events in acute and community settings across participating LHDs. In August 2013, integration to the PCEHR will also provide access to external to NSW Health discharge and event summaries, GP shared health summaries, Australian Childhood Immunisation Register, MBS, PBS, prescriptions and dispense records and consumer entered child health, growth and development information. In relation to child and family information, there is a lack of a consistent and standardised approach to an information system, data sets for data capture, monitoring, evaluation and reporting purposes, and as such the primary information tools used to manage many cross sector services, such as child protection and violence prevention, still revolve around pen, paper and human memory

20 4.3 POTENTIAL AREAS FOR IMPROVEMENT IN EHEALTH Engagement and consultation with stakeholders indicates that: there is strong support for ehealth from clinicians: clinicians enthusiasm for comprehensive electronic health records focuses on connecting diverse systems at the local level and is largely driven by perceived benefits in the immediate surroundings; and there is support for standardisation in delivering safe and quality care across the continuum of care, across diverse care settings and by multiple care providers; there is a strong consumer push for ehealth solutions, which is probably due to the rapid increase in home use of mobile devices, telehealth and the internet, and the increasing visibility of ehealth activity at both State and National level. however, there is frustration at the perceived pace of progress, with calls for: greater and more sustainable investment to support system implementation, maintenance and support; greater education and training to make the best use of systems; and better consumer access to information, knowledge and systems to allow them to take more part in their own care; also, healthcare organisations are at different levels of maturity with their ehealth with metropolitan hospitals generally being better serviced than rural and remote communities. The consultation around this strategy revealed five overarching themes where ehealth services could be improved: 1. Sharing information across sectors over time to support integrated care; 2. Identification and support of individuals and families at risk; 3. Improved access to, and maturity of, clinical and other information systems; 4. Providing information to support policy development and evidence-based care; and 5. Providing a framework for clinical engagement and information governance. These are expanded on below (Table 2). Table 2: themes and opportunities for ehealth 16

21 The next section identifies specific current and future business needs from the perspective of the child, carer and health system. 17

22 05 BUSINESS NEEDS (WHAT IS NEEDED) 18

23 5 BUSINESS NEEDS (WHAT IS NEEDED) 5.1 THE NEEDS OF THE CHILD OR YOUNG PERSON This section provides a client or child centric view on their needs from the health system, which impact on ehealth systems and services. This view considers the needs of the child throughout the continuum from before birth until adulthood (figure 3). Figure 3: life continuum The needs are reflected as four child-centric principles: protect me from harm ; help those who care for me ; respect my wishes ; and treat me the best way possible. Figure 4 provides specific examples of needs within these four categories. These needs are generally applicable throughout the life continuum and across multiple care settings, surveillance, screening and wellbeing programs, and other services. Figure 4: The needs of the child or young person 19

24 5.2 THE NEEDS OF CARE PROVIDERS The knowledge base for healthcare is substantial and constantly evolving with new evidence and treatments becoming available daily. Care providers need to be supported in providing the best possible care to patients and their clients, within an environment where time is limited and there is pressure on resources. Consultation has identified needs to support: direct care provision: a system that knows who the patient or client is, who is involved with providing services and where information and records can be found; client demographic details captured without duplication; consumer friendly processes, language and technology; ability to view key clinical information regardless of source, vendor, location or device; relevant information is available at the point of care to those that need it; and access reliable information about local interagency services; proactive models of care: alerting systems protect the individual s best interests; and links to information about alerts and concerns; identifying and implementing best practice: information for prevention and a healthier population; links to education and training resources; support for clinician and operational decision making; and links to research, and information on best practice and models of care; quality, efficiency and safety improvements: clinical outcome evidence and benchmarks; effective and efficient client and patient centric care; and access to all levels of information and data for reporting, monitoring, evaluation and research purposes. 5.3 THE NEEDS OF THE HEALTH SYSTEM The health system is highly complex with many organisations having responsibility for providing safe, high quality and cost efficient services. The ehealth needs for provider organisations revolve around enabling visibility of these factors and reporting: supporting screening, surveillance and prevention of ill health, poor health outcomes, or harm; enabling early detection and supporting intervention; providing rapid access to all levels of information and data for reporting and research purposes (whilst adhering to confidentiality and privacy requirements); collecting and linking robust outcomes focused data to proactively identify trends at the whole system level; providing the capability to pool information and data to compare to state wide units and standardised outcome measures; linking and/or communicating with Child and Family Health databases e.g. eblue book; enabling reporting on national metrics to support mandatory functions (e.g. for Activity Based Funding) supporting and guiding policy, workforce planning, innovation; and enabling the production of a range of tailored client reports for neonates, children, youth & adolescent care. 5.4 THE NEEDS OF NSW KIDS AND FAMILIES NSW Kids and Families will provide leadership to the NSW health system and partner with stakeholders to champion outstanding health, wellbeing and healthcare for all children, young people and families and reduce 20

25 the health impact of family and community violence, child abuse and neglect. Kids and Families needs to understand how the system is performing, where gaps and anomalies exist, what comprises best practice and how policy can effectively influence the provision of good care (Table 3). Table 3: NSW Kids and Families ehealth needs NSW KIDS AND FAMILIES ROLE EHEALTH NEEDS EMBED EVIDENCE-BASED CARE Research, develop and support the implementation of evidence-based policy, standards, guidelines, best practice programs and care pathways that reduce health risk and improve the quality and continuity of healthcare delivery. INFORM AND SHARE Bring together data and knowledge about what works and share it with those who can influence policy or practice to reduce harm and support improved health outcomes. CONNECT CARE Broker strong connections between both policy makers and healthcare services and provide tools and guidance to better coordinate and integrate care journeys. INSPIRE INNOVATION Stimulate new ways of thinking and working that centre on the child and their healthy growth and development but take into account the diverse nature of the families and communities within which they live. SUPPORT ACTION Build the capacity of healthcare service providers, Communities and families to promote and protect the health and wellbeing of children and their caregivers and support uptake of effective programs and cost-effective models of healthcare delivery. ADVISE AND GUIDE Provide expert advice to governments and healthcare providers regarding system performance and capability and the resources and strategies required to improve health outcomes for children, young people and families. Best practice pathways embedded in EMR and other clinical system workflows and clinical decision support. Data is released from systems to support evaluation, research and monitoring of best practice. Better access to consumer health information, clinical evidence and public health trends. Data is released from systems to support monitoring of best practice models of care, evaluation, and research. Seamless information flow and integrated care pathways to improve patient flow, care and outcomes. Integrating flow between Health and external agencies and integrated pathways and notifications supporting improved outcomes. Technology is used creatively to deliver or inform care. Innovation in client access to services. Remote consultations using telehealth can lead to improved access to care. Use of technology such as mobile applications can offer improved flexibility and mobility of care. Data and systems to support workforce planning and resource allocation. Access to education and professional development resources for staff, and best practice guidelines. Consumer and carer access to education and knowledge resources and tailored information related to their care. Preventative systems for health care, surveillance and screening. Consumer participation in care plans and processes Data extraction, analysis and reporting to support policy development, investment and research decisions. Access to timely, accurate and comprehensive reporting on health system activities and outcomes 21

26 5.5 THE NEEDS SUMMARISED 1. Sharing information across sectors over time to support integrated care There are opportunities to utilise new technologies and information services, developed in NSW and more widely in Australia, to improve information sharing across sectors to support integrated models of care. These systems include the electronic child health record and the shared ehealth record. These support greater consumer involvement in care and combined with parental registration for a national personally controlled ehealth record could support better care delivery at home. They also support greater collaboration within health and potentially with other agencies, assuming that privacy is not compromised. Information systems need to consider the longer term evolution of healthcare. It is already apparent that information captured now for children will be helpful in adult life, particularly information resulting from genomic tests or about an individual s genome itself, which will be an increasingly important predictor of future health. Consumers should be able to access health services including consumer health information, and information about the health system as a whole, that will empower them to make informed choices about their own health and wellbeing. Clinicians need better access to the evidence base that exists and is available through the Clinical Information Access Portal (CIAP). 2. Identification and support of individuals and families at risk The health system as a whole has been described as reactive in that a large part of it only responds when someone has become ill or has been harmed. Many risks to health and well being are predictable and can be prevented if risk factors are identified beforehand and there are many initiatives to be more proactive in identifying such individuals and preventing ill health or harm, or intervening more quickly. Information systems can support children, young people and their families in the following ways: health workers to identify risks and work with colleagues to improve individuals and families health, development and wellbeing; monitor risk factors, alert or notify staff, and manage individuals at risk; and support the coordination and delivery of health and developmental surveillance and screening programs. Clearly in any information sharing environment, both consumers and clinicians need confidence that client identity and privacy are assured. Critically, in NSW there is a pressing need to better inform and connect the circle of providers who respond to sexual assault, child abuse, neglect and family and domestic violence. 3. Improved access to, and maturity of, information systems Mature clinical systems are needed to support the demands of the modern health system. Clinical systems support clinicians by reducing the burden of record keeping, by making information available to support clinical decisions at the point of care, and by supporting clinician and multidisciplinary team workflow, by providing alerts and notifications when tasks are pressing or overdue. There is an urgent need to modernise the current maternity system, which has served its purpose for many years but now needs to be upgraded or replaced. This should be linked to Electronic Medical Record and Electronic Medication Management systems which are being developed in Children s Hospital Westmead. Access to these systems is critical from where care is provided, which may be remote from the patient or client. This requires an investment in the local ICT infrastructure, for instance to reduce system down time and to support wireless networking or remote consultation. Improved bandwidth will also support innovative models of care delivery, which is needed particularly in remote locations but also where the consumer can t readily access physical health services. Consumers appointments should be better coordinated and appointment reminders sent via or text message to reduce non-attendance. There is a need to support mobile working, both in the hospital and beyond, through the use of mobile devices, which may be personally owned. 22

27 4. Providing information to support policy development and evidence-based care Information is critical in developing the evidence to support new models of care, clinical guidelines, clinical audit, identify the need for change, identify best practice, and to support research. It is also essential for the effective management of scarce resources, in population health surveillance and in the developing policy. The ultimate need would be that information is automatically drawn from clinical systems to meet these needs, however to achieve this there needs to be agreement on data sets and the provision of tools and services to extract, analysis and report data to the services that need them. 5. Providing a framework for clinical engagement and information governance NSW Kids and Families is already demonstrated clinical leadership in ehealth through the development of this strategy. This is critical to continue with direct participation in ehealth and information governance groups, to inform and direct strategy; and to get directly involved through encouraging provider and consumer engagement in ehealth delivery programs. The next chapter sets out specific solutions and actions proposed to address these needs. 23

28 06 THE WAY FORWARD The way forward 24

29 6 THE WAY FORWARD This section identifies a number of activities and key solutions that would address the identified needs of the child or young person, their families, health providers, and the health system, and support NSW Kids and Families in realising our vision for ehealth. The key solutions are illustrated along the life continuum in figure 5. Figure 5: themes and key solutions The key solutions are that: 1. We will invest in a world class Maternity EMR (electronic medical record) to support the delivery of care during the antenatal, birthing and post natal period. 2. Every new born will have an integrated electronic Child Health Record to monitor their health, growth and development between settings and over time. This will be the foundation of the Personally Controlled ehealth Record. 3. We will invest in using creative approaches including multi-media & mobile technology to deliver relevant and accessible health information that will empower consumers to make informed choices about their own health and wellbeing. 4. We will design and implement a suite of complementary and integrated systems to better inform and connect the circle of providers who respond to sexual assault, child abuse, neglect and family and domestic violence. 5. We will develop standards and tools to provide information to drive policy development and improvements in clinical practice. 6.1 SOLUTIONS AND ACTIVITIES RELATING TO NEEDS Table 4 lists the main solutions and activities related to the business needs as summarised in the previous section. These are grouped by theme and include the key solutions identified above. The following chapter will set out how these have been prioritised and provide recommendations for how they should be implemented. 25

30 Table 4: Proposed solutions and summarised needs SHARING INFORMATION ACROSS SECTORS OVER TIME TO SUPPORT INTEGRATED CARE PROPOSED SOLUTION STATUS DESCRIPTION OWNER CONSTRAINTS ACTIONS REQUIRED 1. Improved access to information across local health districts through the use state initiatives such as the Shared ehealth Record and State Clinical Repository integration Being refined or rolled out HealtheNet provides NSW Health clinicians with access to shared information from other NSW Health organisations and to a patient/consumers National ehealth Record (NeHR). HealtheNet Portal integration will enable the ability to share information across LHDs and link NSW health organisations and providers with the ability to view information within and across LHDs. HSN DoHA K+F The HealtheNet portal is largely funded by the Commonwealth Department of Health and Ageing (DoHA) as part of the NEHR (PCEHR) system roll out. NSW has limited additional funds to further this roll out or additional development of system capability. NSW Kids and Families should endorse the rollout of HealtheNet and support ongoing connection of clinical systems to provide integrated care records across LHDs NSW Kids and Families should encourage ongoing establishment of connectivity between public and private providers such as edischarge summaries, and ereferrals. 2. Improved access for consumers and providers to National programs such as the electronic Child Health Record and Personally Controlled Electronic Health Record Being developed An electronic child health record could allow children, young people and their families access to information about health services, knowledge bases for evidence based care, and their personal health records. A consumer portal has been deployed a limited number of Maternity Units in Greater Western Sydney. DoHA is looking to implement eblue Book capability as part of the Child ehealth Record. NSW Health will be integrated to PCEHR through the HealtheNet program HSN DoHA The Commonwealth Department of Health and Ageing is developing a business case for a national Child ehealth Record (CeHR) which will have a consumer portal, however the CeHR will not provide information about health services or knowledge bases. State-wide deployment for HealtheNet is not currently capital funded for Statewide rollout. However a business case has been developed by HealthShare for this. NSW Kids and Families should commission a review of consumer needs in respect to access to information, knowledge and personal health records. NSW Kids and Families should support using State and National initiatives to connect providers across public and private sectors and across LHDs. 26