"Watch Me Grow- Electronic (WMG-E)" surveillance approach to identify and address child development, parental mental health, and psychosocial needs: study protocol.

BACKGROUND: The COVID-19 pandemic and the associated economic recession has increased parental psychosocial stress and mental health challenges. This has adversely impacted child development and wellbeing, particularly for children from priority populations (culturally and linguistically diverse (CALD) and rural/regional communities) who are at an already increased risk of health inequality. The increased mental health and psychosocial needs were compounded by the closure of in-person preventive and health promotion programs resulting in health organisations embracing technology and online services. Watch Me Grow- Electronic (WMG-E) - developmental surveillance platform- exemplifies one such service. WMG-E was developed to monitor child development and guide parents towards more detailed assessments when risk is identified. This Randomised Controlled Trial (RCT) aims to expand WMG-E as a digital navigation tool by also incorporating parents' mental health and psychosocial needs. Children and families needing additional assessments and supports will be electronically directed to relevant resources in the 'care-as-usual' group. In contrast, the intervention group will receive continuity of care, with additional in-person assessment and 'warm hand over' by a 'service navigator' to ensure their needs are met. METHODS: Using an RCT we will determine: (1) parental engagement with developmental surveillance; (2) access to services for those with mental health and social care needs; and (3) uptake of service recommendations. Three hundred parents/carers of children aged 6 months to 3 years (recruited from a culturally diverse, or rural/regional site) will be randomly allocated to the 'care-as-usual' or 'intervention' group. A mixed methods implementation evaluation will be completed, with semi-structured interviews to ascertain the acceptability, feasibility and impact of the WMG-E platform and service navigator. CONCLUSIONS: Using WMG-E is expected to: normalise and de-stigmatise mental health and psychosocial screening; increase parental engagement and service use; and result in the early identification and management of child developmental needs, parental mental health, and family psychosocial needs. If effective, digital solutions such as WMG-E to engage and empower parents alongside a service navigator for vulnerable families needing additional support, will have significant practice and policy implications in the pandemic/post pandemic period. TRIAL REGISTRATION: The trial (Protocol No. 1.0, Version 3.1) was registered with ANZCTR (registration number: ACTRN12621000766819 ) on July 21st, 2021 and reporting of the trial results will be according to recommendations in the CONSORT Statement.

A Multistate Trial of an Early Surveillance Program for Autism Within General Practices in Australia.

Background: The early detection of developmental conditions such as autism is vital to ensure children can access appropriate and timely evidence-based supports, services, and interventions. Children who have undetected developmental conditions early in life are more likely to develop later health, developmental, learning, and behavioral issues, which in turn can have a cumulative effect over the life course. Methods: The current protocol describes a multi-site, cluster randomized control trial comparing a developmental surveillance pathway for autism to usual care, using opportunistic visits to general practitioners (GPs). Units of randomization are GP clinics across two Australian states (New South Wales and Victoria), with thirty clinics within each state, each of which will aim to recruit approximately forty children aged between ~18- and 24-months, for a total of ~2,400 participants. Children will be randomized to two clusters; namely, an autism surveillance pathway (ASP) or surveillance as usual (SaU). The screening process for the ASP arm involves primary and secondary screenings for developmental concerns for autism, using both parent and GP reports and observations. Children in both arms who show signs of developmental concerns for autism will be offered a full developmental assessment by the research team at 24 months of age to determine the efficacy of developmental surveillance in successfully identifying children with autism. Trial Registration: The trial is registered with ANZCTR (ACTRN12619001200178) and reporting of the trial results will be according to recommendations in the CONSORT Statement.

Measuring Quality of Healthcare Outcomes in Type 2 Diabetes from Routine Data: a Seven-nation Survey Conducted by the IMIA Primary Health Care Working Group.

Background: The Institute of Medicine framework defines six dimensions of quality for healthcare systems: (1) safety, (2) effectiveness, (3) patient centeredness, (4) timeliness of care, (5) efficiency, and (6) equity. Large health datasets provide an opportunity to assess quality in these areas. Objective: To perform an international comparison of the measurability of the delivery of these aims, in people with type 2 diabetes mellitus (T2DM) from large datasets. Method: We conducted a survey to assess healthcare outcomes data quality of existing databases and disseminated this through professional networks. We examined the data sources used to collect the data, frequency of data uploads, and data types used for identifying people with T2DM. We compared data completeness across the six areas of healthcare quality, using selected measures pertinent to T2DM management. Results: We received 14 responses from seven countries (Australia, Canada, Italy, the Netherlands, Norway, Portugal, Turkey and the UK). Most databases reported frequent data uploads and would be capable of near real time analysis of healthcare quality.The majority of recorded data related to safety (particularly medication adverse events) and treatment efficacy (glycaemic control and microvascular disease). Data potentially measuring equity was less well recorded. Recording levels were lowest for patient-centred care, timeliness of care, and system efficiency, with the majority of databases containing no data in these areas. Databases using primary care sources had higher data quality across all areas measured. Conclusion: Data quality could be improved particularly in the areas of patient-centred care, timeliness, and efficiency. Primary care derived datasets may be most suited to healthcare quality assessment.

Recent Worldwide Developments in eHealth and mHealth to more Effectively Manage Cancer and other Chronic Diseases - A Systematic Review.

OBJECTIVES: This paper is a systematic literature review intended to gain an understanding of the most original, excellent, stateof- the-art research in the application of eHealth (including mHealth) in the management of chronic diseases with a focus on cancer over the past two years. METHOD: This review looks at peer-reviewed papers published between 2013 and 2015 and examines the background and trends in this area. It systematically searched peer-reviewed journals in databases PubMed, Proquest, Cochrane Library, Elsevier, Sage and the Institute of Electrical and Electronic Engineers (IEEE Digital Library) using a set of pre-defined keywords. It then employed an iterative process to filter out less relevant publications. RESULTS: From an initial search return of 1,519,682 results returned, twenty nine of the most relevant peer reviewed articles were identified as most relevant. CONCLUSIONS: Based on the results we conclude that innovative eHealth and its subset mHealth initiatives are rapidly emerging as an important means of managing cancer and other chronic diseases. The adoption is following different paths in the developed and developing worlds. Besides governance and regulatory issues, barriers still exist around information management, interoperability and integration. These include medical records available online information for clinicians and consumers on cancer and other chronic diseases, mobile app bundles that can help manage co-morbidities and the capacity of supporting communication technologies.

Building a Privacy, Ethics, and Data Access Framework for Real World Computerised Medical Record System Data: A Delphi Study. Contribution of the Primary Health Care Informatics Working Group.

BACKGROUND: Privacy, ethics, and data access issues pose significant challenges to the timely delivery of health research. Whilst the fundamental drivers to ensure that data access is ethical and satisfies privacy requirements are similar, they are often dealt with in varying ways by different approval processes. OBJECTIVE: To achieve a consensus across an international panel of health care and informatics professionals on an integrated set of privacy and ethics principles that could accelerate health data access in data-driven health research projects. METHOD: A three-round consensus development process was used. In round one, we developed a baseline framework for privacy, ethics, and data access based on a review of existing literature in the health, informatics, and policy domains. This was further developed using a two-round Delphi consensus building process involving 20 experts who were members of the International Medical Informatics Association (IMIA) and European Federation of Medical Informatics (EFMI) Primary Health Care Informatics Working Groups. To achieve consensus we required an extended Delphi process. RESULTS: The first round involved feedback on and development of the baseline framework. This consisted of four components: (1) ethical principles, (2) ethical guidance questions, (3) privacy and data access principles, and (4) privacy and data access guidance questions. Round two developed consensus in key areas of the revised framework, allowing the building of a newly, more detailed and descriptive framework. In the final round panel experts expressed their opinions, either as agreements or disagreements, on the ethics and privacy statements of the framework finding some of the previous round disagreements to be surprising in view of established ethical principles. CONCLUSION: This study develops a framework for an integrated approach to ethics and privacy. Privacy breech risk should not be considered in isolation but instead balanced by potential ethical benefit.

Does Informatics Enable or Inhibit the Delivery of Patient-centred, Coordinated, and Quality-assured Care: a Delphi Study. A Contribution of the IMIA Primary Health Care Informatics Working Group.

BACKGROUND: Primary care delivers patient-centred and coordinated care, which should be quality-assured. Much of family practice now routinely uses computerised medical record (CMR) systems, these systems being linked at varying levels to laboratories and other care providers. CMR systems have the potential to support care. OBJECTIVE: To achieve a consensus among an international panel of health care professionals and informatics experts about the role of informatics in the delivery of patient-centred, coordinated, and quality-assured care. METHOD: The consensus building exercise involved 20 individuals, five general practitioners and 15 informatics academics, members of the International Medical Informatics Association Primary Care Informatics Working Group. A thematic analysis of the literature was carried out according to the defined themes. RESULTS: The first round of the analysis developed 27 statements on how the CMR, or any other information system, including paper-based medical records, supports care delivery. Round 2 aimed at achieving a consensus about the statements of round one. Round 3 stated that there was an agreement on informatics principles and structures that should be put in place. However, there was a disagreement about the processes involved in the implementation, and about the clinical interaction with the systems after the implementation. CONCLUSIONS: The panel had a strong agreement about the core concepts and structures that should be put in place to support high quality care. However, this agreement evaporated over statements related to implementation. These findings reflect literature and personal experiences: whilst there is consensus about how informatics structures and processes support good quality care, implementation is difficult.

Unravelling the tangled taxonomies of health informatics.

Even though informatics is a term used commonly in healthcare, it can be a confusing and disengaging one. Many definitions exist in the literature, and attempts have been made to develop a clear taxonomy. Despite this, informatics is still a term that lacks clarity in both its scope and the classification of sub-terms that it encompasses. This paper reviews the importance of an agreed taxonomy and explores the challenges of establishing exactly what is meant by health informatics (HI). It reviews what a taxonomy should do, summarises previous attempts at categorising and organising HI and suggests the elements to consider when seeking to develop a system of classification. The paper does not provide all the answers, but it does clarify the questions. By plotting a path towards a taxonomy of HI, it will be possible to enhance understanding and optimise the benefits of embracing technology in clinical practice.

Big Data Usage Patterns in the Health Care Domain: A Use Case Driven Approach Applied to the Assessment of Vaccination Benefits and Risks. Contribution of the IMIA Primary Healthcare Working Group.

BACKGROUND: Generally benefits and risks of vaccines can be determined from studies carried out as part of regulatory compliance, followed by surveillance of routine data; however there are some rarer and more long term events that require new methods. Big data generated by increasingly affordable personalised computing, and from pervasive computing devices is rapidly growing and low cost, high volume, cloud computing makes the processing of these data inexpensive. OBJECTIVE: To describe how big data and related analytical methods might be applied to assess the benefits and risks of vaccines. METHOD: We reviewed the literature on the use of big data to improve health, applied to generic vaccine use cases, that illustrate benefits and risks of vaccination. We defined a use case as the interaction between a user and an information system to achieve a goal. We used flu vaccination and pre-school childhood immunisation as exemplars. RESULTS: We reviewed three big data use cases relevant to assessing vaccine benefits and risks: (i) Big data processing using crowdsourcing, distributed big data processing, and predictive analytics, (ii) Data integration from heterogeneous big data sources, e.g. the increasing range of devices in the "internet of things", and (iii) Real-time monitoring for the direct monitoring of epidemics as well as vaccine effects via social media and other data sources. CONCLUSIONS: Big data raises new ethical dilemmas, though its analysis methods can bring complementary real-time capabilities for monitoring epidemics and assessing vaccine benefit-risk balance.

How integrated are services for patients with chronic obstructive pulmonary disease? Perceptions of patients and health care providers.

Chronic obstructive pulmonary disease (COPD) is a common cause of hospital readmissions worldwide. Outcomes for COPD patients improve if care is more integrated. COPD patients and their health care providers at a district hospital and community health service were interviewed about their perceptions of integration of care. Patients were confused about provider roles, had little understanding of their disease, had difficulty accessing services and did not have COPD action plans. Health care providers espoused integration of COPD care. Care was reasonably well integrated in the hospital. Integration of care was compromised in the community because COPD patients went to the emergency department when symptoms became unmanageable, while only attending their GPs for routine booked appointments. Integration could be improved if health care providers spent more time with patients, promoting understanding of the disease, supporting self-management and liaising with other providers. Patients would benefit from an action plan and additional support. Potentially preventable COPD admissions will continue without action to improve integration of community services and patients' understanding of their condition.

The Evidence-base for Using Ontologies and Semantic Integration Methodologies to Support Integrated Chronic Disease Management in Primary and Ambulatory Care: Realist Review. Contribution of the IMIA Primary Health Care Informatics WG.

BACKGROUND: Most chronic diseases are managed in primary and ambulatory care. The chronic care model (CCM) suggests a wide range of community, technological, team and patient factors contribute to effective chronic disease management. Ontologies have the capability to enable formalised linkage of heterogeneous data sources as might be found across the elements of the CCM. OBJECTIVE: To describe the evidence base for using ontologies and other semantic integration methods to support chronic disease management. METHOD: We reviewed the evidence-base for the use of ontologies and other semantic integration methods within and across the elements of the CCM. We report them using a realist review describing the context in which the mechanism was applied, and any outcome measures. RESULTS: Most evidence was descriptive with an almost complete absence of empirical research and important gaps in the evidence-base. We found some use of ontologies and semantic integration methods for community support of the medical home and for care in the community. Ubiquitous information technology (IT) and other IT tools were deployed to support self-management support, use of shared registries, health behavioural models and knowledge discovery tools to improve delivery system design. Data quality issues restricted the use of clinical data; however there was an increased use of interoperable data and health system integration. CONCLUSIONS: Ontologies and semantic integration methods are emergent with limited evidence-base for their implementation. However, they have the potential to integrate the disparate community wide data sources to provide the information necessary for effective chronic disease management.

Towards an ontology for data quality in integrated chronic disease management: a realist review of the literature.

PURPOSE: Effective use of routine data to support integrated chronic disease management (CDM) and population health is dependent on underlying data quality (DQ) and, for cross system use of data, semantic interoperability. An ontological approach to DQ is a potential solution but research in this area is limited and fragmented. OBJECTIVE: Identify mechanisms, including ontologies, to manage DQ in integrated CDM and whether improved DQ will better measure health outcomes. METHODS: A realist review of English language studies (January 2001-March 2011) which addressed data quality, used ontology-based approaches and is relevant to CDM. RESULTS: We screened 245 papers, excluded 26 duplicates, 135 on abstract review and 31 on full-text review; leaving 61 papers for critical appraisal. Of the 33 papers that examined ontologies in chronic disease management, 13 defined data quality and 15 used ontologies for DQ. Most saw DQ as a multidimensional construct, the most used dimensions being completeness, accuracy, correctness, consistency and timeliness. The majority of studies reported tool design and development (80%), implementation (23%), and descriptive evaluations (15%). Ontological approaches were used to address semantic interoperability, decision support, flexibility of information management and integration/linkage, and complexity of information models. CONCLUSION: DQ lacks a consensus conceptual framework and definition. DQ and ontological research is relatively immature with little rigorous evaluation studies published. Ontology-based applications could support automated processes to address DQ and semantic interoperability in repositories of routinely collected data to deliver integrated CDM. We advocate moving to ontology-based design of information systems to enable more reliable use of routine data to measure health mechanisms and impacts.

The University of NSW electronic practice based research network: disease registers, data quality and utility.

INTRODUCTION: Accurate well-maintained registers are a prerequisite to co-ordinated care of patients with chronic diseases. Their effectiveness in enabling improved management is dependent on the quality of the information captured. This paper provides an overview into the methodology and data quality of the electronic Practice Based Research Network. METHODS: Clinical records with no identifying information are routinely extracted from four general practices. The data are linked in the data warehouse. Data quality is assessed for completeness, correctness and consistency. Reports on data quality are given back to practices and semi-structured interviews provide information to interpret the results and discuss how data quality could be improved. FINDINGS: Data quality is mostly complete for sex and date of birth but indigenous status, smoking and weight were incomplete. There are generally high levels of correctness and internal consistency. Completeness of records in assisting the management of diabetes patients using the annual cycle of care was poor. GPs often use the progress notes to enter information during the consultation and coding diagnoses was considered onerous. DISCUSSION: The routine capture of electronic clinical health records from primary health care and health services can be used to monitor performance and improve the quality of clinical records. There is a need for accurate and comprehensive clinical records to ensure the safety and quality of clinical practice. Understanding the true reasons for poor data quality is complex. Having a community-based research network may assist in answering some of these questions. CONCLUSION: Electronic health records are increasingly being used for secondary research and evaluation, beyond the primary purpose of supporting clinical care. The data must be of sufficient quality to support these purposes.

Key concepts to assess the readiness of data for international research: data quality, lineage and provenance, extraction and processing errors, traceability, and curation. Contribution of the IMIA Primary Health Care Informatics Working Group.

OBJECTIVE: To define the key concepts which inform whether a system for collecting, aggregating and processing routine clinical data for research is fit for purpose. METHODS: Literature review and shared experiential learning from research using routinely collected data. We excluded socio-cultural issues, and privacy and security issues as our focus was to explore linking clinical data. RESULTS: Six key concepts describe data: (1) DATA QUALITY: the core Overarching concept - Are these data fit for purpose? (2) Data provenance: defined as how data came to be; incorporating the concepts of lineage and pedigree. Mapping this process requires metadata. New variables derived during data analysis have their own provenance. (3) Data extraction errors and (4) Data processing errors, which are the responsibility of the investigator extracting the data but need quantifying. (5) Traceability: the capability to identify the origins of any data cell within the final analysis table essential for good governance, and almost impossible without a formal system of metadata; and (6) Curation: storing data and look-up tables in a way that allows future researchers to carry out further research or review earlier findings. CONCLUSION: There are common distinct steps in processing data; the quality of any metadata may be predictive of the quality of the process. Outputs based on routine data should include a review of the process from data origin to curation and publish information about their data provenance and processing method.

Diabetes risk reduction behaviours of rural postpartum women with a recent history of gestational diabetes.

INTRODUCTION: For most women, gestational diabetes is temporary; however, an episode of gestational diabetes mellitus (GDM) confers an approximately seven-fold increased risk of developing type 2 diabetes mellitus. OBJECTIVE: To examine readiness to adopt diabetes risk reduction behaviours and the prevalence of these behaviours among rural women with GDM during their last pregnancy. METHODS: The study design was a self-administered mailed questionnaire seeking information about demographics, stage of change, physical activity level and dietary fat intake. SETTING: Regional outpatient context. PARTICIPANTS: Women with a single episode of GDM between 1 July 2001 and 31 December 2005 (n = 210). MAIN OUTCOME MEASURES: Stage of change for physical activity, weight loss and reducing dietary fat behaviour; meeting activity targets, body mass index (BMI) and dietary fat score. RESULTS: Eighty-four women returned completed questionnaires (40% response rate). Of the 77 women eligible (mean age 35 ± 3.8 years), 58% met recommended activity targets. Sixty-three percent of women were overweight or obese: mean BMI 29.6 kg/m² (± 7.30). Women reported a high level of preparedness to engage in physical activity, weight loss and reduction of fat intake. Thirty-nine percent of women had not had any postpartum follow-up glucose screening. Women who remembered receiving diabetes prevention information were significantly more likely to meet physical activity targets (p<0.05). CONCLUSIONS: Readiness to engage in behaviour change was high among this group of rural women for all three diabetes risk reduction behaviours measured. However, despite a high proportion of women meeting activity targets and reducing fat intake, the majority of women remained overweight or obese. Postpartum follow-up glucose testing needs to be improved and the impact of diabetes prevention information provided during pregnancy warrants further study.

Electronic decision support in general practice. What's the hold up?

BACKGROUND: The uptake of computers in Australian general practice has been for administrative use and prescribing, but the development of electronic decision support (EDS) has been particularly slow. Therefore, computers are not being used to their full potential in assisting general practitioners to care for their patients. OBJECTIVE: This article examines current barriers to EDS in general practice and possible strategies to increase its uptake. DISCUSSION: Barriers to the uptake of EDS include a lack of a business case, shifting of costs for data collection and management to the clinician, uncertainty about the optimal level of decision support, lack of technical and semantic standards, and resistance to EDS use by the time conscious GP. There is a need for a more strategic and attractive incentives program, greater national coordination, and more effective collaboration between government, the computer industry and the medical profession if current inertia is to be overcome.

Australian doctors and their postgraduate qualifications.

BACKGROUND: A key activity for doctors is lifelong learning. This may be as part of professional development, vocational registration, formal postgraduate study, e.g. university diplomas and degrees, or vocational training which leads to fellowship of a professional college. However, there are significant barriers of time and cost that prevent many doctors from participating in lifelong learning. METHOD: We examined the range of basic and postgraduate qualifications held by a representative sample of 1198 doctors provided by the HIC of Australian doctors. DISCUSSION: Significant numbers of general practitioners practise without a formal postgraduate qualification in general practice, unlike our specialist colleagues. However, postgraduate studies are undertaken in a variety of other formats and qualifications.

Perceived need for mental health care: influences of diagnosis, demography and disability.

BACKGROUND: Recent major epidemiological studies have adopted increasingly multidimensional approaches to assessment. Several of these have included some assessment of perceived need for mental health care. The Australian National Survey of Mental Health and Wellbeing, conducted in 1997, included a particularly detailed examination of this construct, with an instrument with demonstrated reliability and validity. METHODS: A clustered probability sample of 10641 Australians responded to the field questionnaire for this survey, including questions on perceived need either where there had been service utilization, or where a disorder was detected by administration of sections of the Composite International Diagnostic Interview. The confidentialized unit record file generated from the survey was analysed for determinants of perceived need. RESULTS: Perceived need is increased in females, in people in the middle years of adulthood, and in those who have affective disorders or co-morbidity. Effects of diagnosis and disability can account for most of the differences in gender specific rates. With correction for these effects through regression, there is less perceived need for social interventions and possibly more for counselling in females; disability is confirmed as strongly positively associated with perceived need, as are the presence of affective disorders or co-morbidity. CONCLUSIONS: The findings of this study underscore the imperative for mental health services to be attentive and responsive to consumer perceived need. The substantial majority of people who are significantly disabled by mental health problems are among those who see themselves as having such needs.

Anticoagulant therapy. Will computer use improve outcomes?

BACKGROUND: Anticoagulant therapy has been steadily increasing in clinical practice. With its narrow therapeutic range for efficacy and adverse events, this trend can lead to greater morbidity and mortality, making it an increasingly significant clinical, economic, medicolegal and public health issue. OBJECTIVE: To examine issues and challenges arising from the increasing use of anticoagulants in general practice. DISCUSSION: Adherence and regular monitoring by an effective multidisciplinary health care team is critical to optimise anticoagulant therapy. Clinicians, carers and patients need good information, training and support. Adherence to anticoagulation therapy is influenced by clinician interest, skills and involvement in shared decision making and risk counselling. Computerised decision support, based on relevant and comprehensive guidelines for anticoagulant therapy, can improve the way patients and clinicians manage anticoagulant therapy.

Emergency and primary care at a Melbourne hospital: reasons for attendance and satisfaction.

The reasons for attendance, presenting health problems, functional status, pain and severity, and satisfaction with emergency and primary care were examined using routinely collected data and an interviewer-assisted survey of patients. Patients attended, mostly after hours, because they believed their health problems required hospital-based management. GPs referred for admission and further evaluation. Ethnicity, employment status, gender and age contributed to differences in access, morbidity and pain scores. Pain scores, functional status and English language skills influenced satisfaction. Culturally sensitive hospital- and community-based clinicians are important to promote better services, after-hours care, referral and triage. It is essential to have appropriate policy and legislation, adequate infrastructure and resources, good communication strategies, telecommunication technology, explicit evidence-based protocols for shared care, referral and triage and ongoing training and support for clinicians and consumers.