Undercounting diagnoses in Australian general practice: a data quality study with implications for population health reporting.

BACKGROUND: Diagnosis can often be recorded in electronic medical records (EMRs) as free-text or using a term with a diagnosis code. Researchers, governments, and agencies, including organisations that deliver incentivised primary care quality improvement programs, frequently utilise coded data only and often ignore free-text entries. Diagnosis data are reported for population healthcare planning including resource allocation for patient care. This study sought to determine if diagnosis counts based on coded diagnosis data only, led to under-reporting of disease prevalence and if so, to what extent for six common or important chronic diseases. METHODS: This cross-sectional data quality study used de-identified EMR data from 84 general practices in Victoria, Australia. Data represented 456,125 patients who attended one of the general practices three or more times in two years between January 2021 and December 2022. We reviewed the percentage and proportional difference between patient counts of coded diagnosis entries alone and patient counts of clinically validated free-text entries for asthma, chronic kidney disease, chronic obstructive pulmonary disease, dementia, type 1 diabetes and type 2 diabetes. RESULTS: Undercounts were evident in all six diagnoses when using coded diagnoses alone (2.57-36.72% undercount), of these, five were statistically significant. Overall, 26.4% of all patient diagnoses had not been coded. There was high variation between practices in recording of coded diagnoses, but coding for type 2 diabetes was well captured by most practices. CONCLUSION: In Australia clinical decision support and the reporting of aggregated patient diagnosis data to government that relies on coded diagnoses can lead to significant underreporting of diagnoses compared to counts that also incorporate clinically validated free-text diagnoses. Diagnosis underreporting can impact on population health, healthcare planning, resource allocation, and patient care. We propose the use of phenotypes derived from clinically validated text entries to enhance the accuracy of diagnosis and disease reporting. There are existing technologies and collaborations from which to build trusted mechanisms to provide greater reliability of general practice EMR data used for secondary purposes.

Identifying primary care datasets and perspectives on their secondary use: a survey of Australian data users and custodians.

BACKGROUND: Most people receive most of their health care in in Australia in primary care, yet researchers and policymakers have limited access to resulting clinical data. Widening access to primary care data and linking it with hospital or other data can contribute to research informing policy and provision of services and care; however, limitations of primary care data and barriers to access curtail its use. The Australian Health Research Alliance (AHRA) is seeking to build capacity in data-driven healthcare improvement; this study formed part of its workplan. METHODS: The study aimed to build capacity for data driven healthcare improvement through identifying primary care datasets in Australia available for secondary use and understand data quality frameworks being applied to them, and factors affecting national capacity for secondary use of primary care data from the perspectives of data custodians and users. Purposive and snowball sampling were used to disseminate a questionnaire and respondents were invited to contribute additional information via semi-structured interviews. RESULTS: Sixty-two respondents collectively named 106 datasets from eclectic sources, indicating a broad conceptualisation of what a primary care dataset available for secondary use is. The datasets were generated from multiple clinical software systems, using different data extraction tools, resulting in non-standardised data structures. Use of non-standard data quality frameworks were described by two-thirds of data custodians. Building trust between citizens, clinicians, third party data custodians and data end-users was considered by many to be a key enabler to improve primary care data quality and efficiencies related to secondary use. Trust building qualities included meaningful stakeholder engagement, transparency, strong leadership, shared vision, robust data security and data privacy protection. Resources to improve capacity for primary care data access and use were sought for data collection tool improvements, workforce upskilling and education, incentivising data collection and making data access more affordable. CONCLUSIONS: The large number of identified Australian primary care related datasets suggests duplication of labour related to data collection, preparation and utilisation. Benefits of secondary use of primary care data were many, and strong national leadership is required to reach consensus on how to address limitations and barriers, for example accreditation of EMR clinical software systems and the adoption of agreed data and quality standards at all stages of the clinical and research data-use lifecycle. The study informed the workplan of AHRA's Transformational Data Collaboration to improve partner engagement and use of clinical data for research.

The impact of public performance reporting on cancer elective surgery waiting times: a data linkage study.

BACKGROUND: Excessive waiting times for cancer elective surgery are a concern in publicly funded healthcare systems. Several countries including Australia have introduced healthcare reforms involving time-based targets and public performance reporting (PPR) of hospital data. However, there is mixed evidence of their benefits. We sought to examine the impact of targets and PPR of cancer elective surgery waiting times on access to breast, bowel and lung cancer elective surgery. METHODS: We analysed routinely-collected linked data on admissions and waiting times for patients aged 15 years or over (n = 199,885) who underwent cancer surgery in a public hospital in Victoria, Australia over a 10-year period. We conducted difference-in-differences analyses to compare waiting times before (2006-07 to 2011-12) and after (2012-13 to 2015-16) the introduction of PPR in meeting these targets. RESULTS: Across all cancer types, urgent patients were all treated within 30 days before and after PPR. Following PPR, there was a slight increase in the mean waiting times across all cancer types and urgency categories. Patients with lung cancer waited on average two and half days longer for treatment and patients with breast cancer waited on average half-a-day less. There was no effect of PPR on waiting times for patients with bowel cancer across urgency categories. CONCLUSIONS: Our findings suggest that time-based targets and PPR had minimal impact on surgical waiting times. This may be due to reasonable waiting times prior to PPR, improved efficiency being masked by 20% growth in the population, lack of public knowledge that waiting times are publicly reported, or lack of real-time reporting to drive behavioural change. The use of generic elective surgery recommended waiting time measures for cancer is discussed.

Gathering data for decisions: best practice use of primary care electronic records for research.

In Australia, there is limited use of primary health care data for research and for data linkage between health care settings. This puts Australia behind many developed countries. In addition, without use of primary health care data for research, knowledge about patients' journeys through the health care system is limited. There is growing momentum to establish "big data" repositories of primary care clinical data to enable data linkage, primary care and population health research, and quality assurance activities. However, little research has been conducted on the general public's and practitioners' concerns about secondary use of electronic health records in Australia. International studies have identified barriers to use of general practice patient records for research. These include legal, technical, ethical, social and resource-related issues. Examples include concerns about privacy protection, data security, data custodians and the motives for collecting data, as well as a lack of incentives for general practitioners to share data. Addressing barriers may help define good practices for appropriate use of health data for research. Any model for general practice data sharing for research should be underpinned by transparency and a strong legal, ethical, governance and data security framework. Mechanisms to collect electronic medical records in ethical, secure and privacy-controlled ways are available. Before the potential benefits of health-related data research can be realised, Australians should be well informed of the risks and benefits so that the necessary social licence can be generated to support such endeavours.

The use of public performance reporting by general practitioners: a study of perceptions and referral behaviours.

BACKGROUND: Public performance reporting (PPR) of hospital data aims to improve quality of care in hospitals and to inform consumer choice. In Australia, general practitioners (GPs) are gatekeepers to secondary care with patients requiring their referral for non-emergency access. Despite their intermediary role, GPs have been generally overlooked as potential users of PPR of hospital data, with the majority of the PPR research focussing on consumers, surgeons and hospitals. METHODS: We examined the use of PPR of hospital data by GPs when referring patients to hospitals. Semi-structured interviews were conducted with 40 GPs, recruited via the Victorian Primary Care Practice-Based Research Network and GP teaching practices in Victoria, Australia. The interviews were recorded, transcribed and analysed thematically. RESULTS: We found that the majority of GPs did not use PPR when referring patients to hospitals. Instead, they relied mostly on informal sources of information such as their own or patients' previous experiences. Barriers that prevented GPs' use of PPR in their decision making included: lack of awareness and accessibility; perceived lack of data credibility; restrictive geographical catchments for certain hospitals; limited choices of public hospitals in regional and rural areas; and no mandatory PPR for private hospitals. CONCLUSIONS: Our findings suggest that lack of PPR awareness prevented GPs from using it in their referral practice. As gatekeepers to secondary care, GPs are in a position to guide patients in their treatment decisions and referrals using available PPR data. We suggest that there needs to be greater involvement by GPs in the development of hospital performance and quality indicators in Australia if GPs are to make greater use of them. The indicators require further development before GPs perceive them as valid, credible, and of use for informing their referral practices.

Perceived barriers to effective implementation of public reporting of hospital performance data in Australia: a qualitative study.

BACKGROUND: Public reporting of government funded (public) hospital performance data was mandated in Australia in 2011. Studies suggest some benefit associated with such public reporting, but also considerable scope to improve reporting systems. METHODS: In 2015, a purposive sample of 41 expert informants were interviewed, representing consumer, provider and purchasers perspectives across Australia's public and private health sectors, to ascertain expert opinion on the utility and impact of public reporting of health service performance. Qualitative data was thematically analysed with a focus on reporting perceived strengths and barriers to public reporting of hospital performance data (PR). RESULTS: Many more weaknesses and barriers to PR were identified than strengths. Barriers were: conceptual (unclear objective, audience and reporting framework); systems-level (including lack of consumer choice, lack of consumer and clinician involvement, jurisdictional barriers, lack of mandate for private sector reporting); technical and resource related (including data complexity, lack of data relevance consistency, rigour); and socio-cultural (including provider resistance to public reporting, poor consumer health literacy, lack of consumer empowerment). CONCLUSIONS: Perceptions of the Australian experience of PR highlight important issues in its implementation that can provide lessons for Australia and elsewhere. A considerable weakness of PR in Australia is that the public are often not considered its major audience, resulting in information ineffectually framed to meet the objective of PR informing consumer decision-making about treatment options. Greater alignment is needed between the primary objective of PR, its audience and audience needs; more than one system of PR might be necessary to meet different audience needs and objectives. Further research is required to assess objectively the potency of the barriers to PR suggested by our panel of informants.

Interface, interaction and integration: how people with chronic disease in Australia manage CAM and conventional medical services.

OBJECTIVES: To understand the extent to which conventional and complementary health care are integrated for CAM users with chronic conditions. METHODS: In-depth interviews and a self-administered questionnaire were used to collect data on care-seeking, self-management and CAM use among people with type 2 diabetes and/or cardiovascular disease living in Victoria, Australia. RESULTS: Many participants reported regular, frequent and long-term use of CAM therapies to maintain their health or assist in the management of their chronic condition. They generally managed the interface between convention and complementary health care on their own, as the perceived or expressed negative attitudes of some doctors, or the belief that the doctor did not need to know, were barriers to the disclosure of CAM use. For a smaller group, there was interaction between conventional and CAM providers, which limited the extent of uncertainty and conflicting information being (mis)interpreted by consumers. CONCLUSIONS: Greater interaction between CAM and medical providers would be beneficial to consumers. Structural barriers, related to financing and service organization, need to be addressed. Attitudinal shifts of some health-care practitioners also need to be addressed, in the context of workforce development.

Room for improvement: complementary therapy users and the Australian health system.

CONTEXT: People with chronic conditions who are often in contact with the health-care system are well placed to reflect on how services meet their needs. Some research characterizes people who use complementary and alternative medicines (CAMs) as a distinct group who opt out of the mainstream health system. However, many CAM users are people with chronic or terminal health conditions who concurrently use mainstream health-care services. The difference in perspectives between people with chronic conditions who do or do not use CAM has received little attention by researchers. OBJECTIVE: To explore the views of CAM users with chronic conditions and identify their perspectives on the health system. DESIGN AND SETTING: In-depth interviews and a self-administered questionnaire were used to collect data on care-seeking, self-management and CAM use among people with type 2 diabetes and/or cardiovascular disease living in Victoria, Australia. RESULTS: One in four CAM practitioner users was partly motivated to use CAM as a result of their dissatisfaction with the mainstream health system. In general, their dissatisfaction mirrored the concerns of the general population. This included the perceived lack of a humanistic or person-centred approach, which was central to problems relating to individuals' clinical encounters as well as to health system design. DISCUSSION AND CONCLUSION: Participants' concerns suggest room for improvement in the Australian health system to better reflect patients' needs. A systems approach is needed to reorient health-care practitioners to modify the organization of care because of the incentives embedded in the structure of the health-care system.

Using primary care data for research: What are the issues and potential solutions?

BACKGROUND: Interest in using primary care data for research is growing with increasing recognition of its potential for improving healthcare. Many issues exist, some inherent in the data and others external. OBJECTIVE: This paper explores the main issues associated with the use of primary care data for research and proposed solutions to address them. DISCUSSION: Issues related to the use of primary care data for research are complex. Government reimbursement system administrative data have limitations as they lack clinical detail. General practice electronic medical record data are more suitable; however, challenges include variable data quality and interoperability. There are concerns from general practices and the public about data access and use. Strategies to address these issues include incorporating best-practice principles, implementing standards and data quality frameworks, creating partnerships between data custodians and ensuring robust governance systems exist. Leadership and the will of key stakeholders to reform, with governmental support in implementing required actions, must be prioritised.

Serious decisions: chronic conditions and choice of provider.

People with chronic health conditions combine conventional medical care with different complementary and alternative medicine (CAM) therapies for varying reasons. The data on which we drew to elucidate this derive from a large mixed-methods study utilizing participant observation, in-depth interviews with 69 people with type 2 diabetes mellitus and/or cardiovascular disease (CVD), and interviews with 20 health care providers. Although integrative practices are increasingly common, people make clear choices about and trade-offs between conventional medical care and CAM, often using CAM and prescribed pharmaceuticals in tandem for different conditions and distinct purposes and outcomes. As we illustrate, some people perceived type 2 diabetes and CVD as "too serious" for CAM treatment, but concurrently, many turned to CAM providers in appreciation of the serious attention these providers paid to their health-related concerns.

The strength to cope: spirituality and faith in chronic disease.

The lifelong management of a chronic condition requires considerable mental fortitude and commitment in social adjustment and adherence to medical advice. In examining strategies of adaptation, we draw on ethnographic research, including interviews with 69 people with type 2 diabetes and/or cardiovascular disease. We explore how they incorporate spirituality into their self-management routines, with positive impact on their health and wellbeing, and highlight the role of spiritual practices in supporting people with chronic conditions mentally, physically and socially, so encouraging personal responsibility for one's health and wellbeing.

A dialogue between naturopathy and critical medical anthropology: what constitutes holistic health?

Building on a dialogue between three trained naturopaths and a proponent of critical medical anthropology (CMA), this article highlights the relationship between health and society from the viewpoint of two fields that share this focal concern. Both naturopathy and CMA are committed to the notion of holistic health, although their approaches have historically been somewhat different. The responses of the three naturopaths to CMA exhibit both similarities and differences, particularly in terms of insights that CMA may make to naturopathy. This essay also articulates the CMA perspective of naturopathy and posits lessons that naturopathy can teach CMA.

Public comprehension of privacy protections applied to health data shared for research: An Australian cross-sectional study.

INTRODUCTION: Sharing of health data for secondary uses such as research and public policy development is common. There are many potential benefits, but also risks if information about an individual's health record can be inferred. Studies show cautious willingness amongst the public to share health data for beneficial purposes, as long as they are confident in their data privacy and security. There has been relatively little research into whether the technical guarantees of privacy-preserving technologies are well understood by people asked to consent to sharing their data. OBJECTIVES: We sought to assess how accurately people understood the effectiveness of techniques for protecting the privacy of shared health data. METHODS: We designed an online survey describing a data-sharing scenario motivated by medical research where data could be shared: raw (including identifiers), de-identified (using k-anonymity), aggregated, and differential privacy applied to aggregated data. Respondents were asked about willingness to share their data, and how likely it was that they could be identified. They were also asked for the meaning of 'de-identified' and whether they would agree to sharing information for 'not solely commercial' purposes, thus mirroring the consent language used by Australia's My Health Record system. RESULTS: Our findings revealed substantial tolerance for researcher use of health data with consistent preference to share data when better privacy-preserving techniques were employed. This was not entirely consistent as slight preference was shown for aggregated data over differential privacy, despite differential privacy being objectively more secure. We conjecture this was because differential privacy and its benefits were not well understood. Similarly, respondents showed no consistent understanding of the term 'de-identified', indicating that this needs to be carefully defined in contexts that seek consent. Finally, many respondents who indicated a willingness to share for purposes that were 'not solely commercial' nevertheless rejected at least some specific scenarios that mixed research and commercial objectives, again indicating a possible gap in their understanding of the terms. CONCLUSIONS: We found overall preference for better privacy protection of data as a precondition for secondary use, but limitations in respondents' understanding of key terminology and the differing privacy guarantees of available techniques. Further effort is needed to word secondary data use consent policies to ensure public understanding of commonly used terms and methods, if genuinely informed consent for data sharing is to be gained.

Integration of complementary and alternative medicine information and advice in chronic disease management guidelines.

The growing evidence on the benefits and risks of complementary and alternative medicine (CAM) and its high rate of use (69% of Australians) - particularly for chronic or recurrent conditions - means increasing attention on CAM. However, few people disclose CAM use to their GP, and health professionals tend to inadequately discuss CAM-related issues with their patients, partly due to insufficient knowledge. As clinical and non-clinical chronic condition management guidelines are a means to educate primary health care practitioners, we undertook a content analysis of guidelines relevant to two common chronic conditions - cardiovascular disease (CVD) and type 2 diabetes mellitus (T2DM) - to assess their provision of CAM-related information. Ten current Australian guidelines were reviewed, revealing scant CAM content. When available, the CAM-relevant information was brief, in some cases unclear, inconclusive and lacking in direction to the GP or health care provider. Although we focus on CVD and T2DM, we argue the value of all chronic condition management guidelines integrating relevant evidence-informed information and advice on CAM risks, benefits and referrals, to increase GP awareness and knowledge of appropriate CAM therapies, and potentially to facilitate doctor-client discussion about CAM.

Supporting good practice in the provision of services to people with comorbid mental health and alcohol and other drug problems in Australia: describing key elements of good service models.

BACKGROUND: The co-occurrence of mental illness and substance use problems (referred to as "comorbidity" in this paper) is common, and is often reported by service providers as the expectation rather than the exception. Despite this, many different treatment service models are being used in the alcohol and other drugs (AOD) and mental health (MH) sectors to treat this complex client group. While there is abundant literature in the area of comorbidity treatment, no agreed overarching framework to describe the range of service delivery models is apparent internationally or at the national level. The aims of the current research were to identify and describe elements of good practice in current service models of treatment of comorbidity in Australia. The focus of the research was on models of service delivery. The research did not aim to measure the client outcomes achieved by individual treatment services, but sought to identify elements of good practice in services. METHODS: Australian treatment services were identified to take part in the study through a process of expert consultation. The intent was to look for similarities in the delivery models being implemented across a diverse set of services that were perceived to be providing good quality treatment for people with comorbidity problems. RESULTS: A survey was designed based on a concept map of service delivery devised from a literature review. Seventeen Australian treatment services participated in the survey, which explored the context in which services operate, inputs such as organisational philosophy and service structure, policies and procedures that guide the way in which treatment is delivered by the service, practices that reflect the way treatment is provided to clients, and client impacts. CONCLUSIONS: The treatment of people with comorbidity of mental health and substance use disorders presents complex problems that require strong but flexible service models. While the treatment services included in this study reflected the diversity of settings and approaches described in the literature, the research found that they shared a range of common characteristics. These referred to: service linkages; workforce; policies, procedures and practices; and treatment.

Barriers to comorbidity service delivery: the complexities of dual diagnosis and the need to agree on terminology and conceptual frameworks.

This paper draws from a literature review commissioned as part of a larger project evaluating comorbidity treatment service models, which was funded by the Australian Government Department of Health and Ageing as part of the National Comorbidity Initiative. The co-occurrence of mental health and substance use disorders (comorbidity) is a common and complex problem. This paper outlines conceptual and practical complexities and barriers associated with comorbidity treatment service delivery, particularly around the variable nature of comorbidity, and the impacts of the separation of the mental health (MH) and alcohol and other drug (AOD) sectors with their differing institutional cultures, aetiological concepts, philosophical underpinnings, educational requirements, administrative arrangements, and screening and treatment approaches. Issues pertaining to the lack of consistent definitions and conceptual frameworks for comorbidity are discussed, particularly in relation to the reported lack of communication, collaboration, and linkages between the sectors. It is suggested that the adoption of consistent terminology and conceptual frameworks may provide a valuable step towards consistency in service provision and research and could lead to improved capacity to address the many issues relating to comorbidity service provision and treatment efficacy.

Big data or big risk: general practitioner, practice nurse and practice manager attitudes to providing de-identified patient health data from electronic medical records to researchers.

Research utilising de-identified patient health information extracted from electronic medical records (EMRs) from general practices has steadily grown in recent years in response to calls to increase use of health data for research and other secondary purposes in Australia. Little is known about the views of key primary care personnel on this issue, which are important, as they may influence whether practices agree to provide EMR data for research. This exploratory qualitative study investigated the attitudes and beliefs of general practitioners (GPs), practice managers (PMs) and practice nurses (PNs) around sharing de-identified EMR patient health information with researchers. Semi-structured interviews were conducted with 11 participants (6 GPs, 3 PMs and 2 PNs) recruited via purposive sampling from general practices in Victoria, Australia. Transcripts were coded and thematically analysed. Participants were generally enthusiastic about research utilising de-identified health information extracted from EMRs for altruistic reasons, including: positive effects on primary care research, clinical practice and population health outcomes. Concerns raised included patient privacy and data breaches, third-party use of extracted data and patient consent. These findings can provide guidance to researchers and policymakers in designing and implementing projects involving de-identified health information extracted from EMRs.

Public disclosure of hospital clinicians' performance data: insights from medical directors.

Objective This study gathered information from public hospital chief medical officers to better understand underlying mechanisms through which public reporting affects institutional behavioural change and decision making towards quality improvement. Methods This qualitative study used thematic analysis of 17 semistructured, in-depth interviews among a peak group of medical directors representing 26 health services in Victoria, Australia. Results The medical directors indicated a high level of in-principle support for public reporting of identifiable, individual clinician-level data. However, they also described varying conceptual understanding of what public reporting of performance data is. Overall, they considered public reporting of individual clinicians' performance data a means to improve health care quality, increase transparency and inform consumer healthcare decision making. Most identified caveats that would need to be met before such data should be publicly released, in particular the need to resolve issues around data quality and timeliness, context and interpretation and ethics. Acknowledgement of the public's right to access individual clinician-level data was at odds with some medical directors' belief that such reporting may diminish trust between clinicians and their employers, thus eroding rather than motivating quality improvement. Conclusions Public reporting of identifiable individual healthcare clinicians' performance data is an issue that merits robust research and debate given the effects such reporting may have on doctors and on hospital quality and safety. What is known about the topic? The public reporting of individual clinician-level data is a mechanism used in some countries, but not in Australia, for increasing health care transparency and quality. Clinician-level public reporting of doctors' performance attracts contention and debate in Australia. What does this paper add? This paper informs debate around the public reporting of individual clinician-level performance data. Among a discrete cohort of senior hospital administrators in Victoria, Australia, there was strong in-principle support for such public reporting as a means to improve hospital quality and safety. What are the implications for practitioners? Before public reporting of individual clinician performance data could occur in Australia, resolution of issues would be required relating to legality and ethics, data context and interpretation, data quality and timeliness.

Integrating Traditional and Complementary Medicine with National Healthcare Systems for Universal Health Coverage in Asia and the Western Pacific.

In the WHO Western Pacific Region, traditional medicine has extensively been used by communities as part of primary health care which is critical foundation for achieving universal health coverage (UHC). This paper conceptualizes integration of traditional and complementary medicine (T&CM) into national health systems and explores how such integration can contribute to pathways toward UHC. Integration has been variously conceptualized at health system, service delivery, and consumer levels. Integration can be conceptualized based on the level of institutionalization of T&CM in national health systems (i.e. regulation of T&CM, education system, monitoring and health financial scheme). According to it, countries and areas of the Region can be categorized: countries with: 'well-established integration strategies'; 'in-process of developing and implementing integration policies'; 'mixed-level of integration'; or 'indigenous traditional medicine practiced outside the national healthcare system'. Integration of T&CM may offer pathways to advance five health system attributes essential to achieve UHC, namely: quality; efficiency; equity; accountability; and sustainability and resilience. It can contribute to improving quality of healthcare services through regulation of T&CM products, practitioners and services used by communities; meeting population needs in ageing population and managing non-communicable diseases; improving equitable access to care through health insurance coverage of T&CM; improving accountability by monitoring and use of data for informed-policy decisions on T&CM; and strengthening sustainability and resilience through maximizing potentials of T&CM in managing outbreaks of infectious diseases and disasters. Depending on the level of integration, actions to move forward integration of T&CM as a pathway toward UHC will be various.