Abstract
Changes in healthcare, such as integrated care, the use of big data, electronic health records (EHRs), telemedicine, decision support systems and consumer empowerment, are impacting on the management of health information. Integrated care requires linked data; activity-based funding requires valid coding; EHRs require standards for documentation, retrieval and analysis; and decision support systems require standardised nomenclatures. The ethical oversight of how health-related information is used, as opposed to governance of its content, storage and communication, remains ill-defined. More fundamentally, the conceptual foundations of health information in terms of “diagnostic” constructs are creating limitations: Why should a medical diagnosis be privileged as the key descriptor of care, over disability or other aspects of the human experience? Who gets to say what matters, and how and by whom is that translated into meaningful information? These are important questions on which the health information management profession is well placed to lead. In this changing environment, threats and opportunities for the profession are presented and discussed. Highlighted is the need for leadership from the profession on the ethical use of health information.
Keywords
Healthcare is radically changed and this has been particularly evident in the last 20 years. Progress in biotechnology, new concepts of diagnosis (e.g. genetic testing, service integration, changed professional roles and new funding models) continually challenge how we deliver, manage and even think about health and healthcare.
Health information is also driving change in its own right. Increased use of electronic health records (EHRs) and billing data has made explicit the link between practice outcomes and resource use. “Big data” make detailed practices and outcomes visible at both consumer and provider levels, and the resulting insights are driving the next wave of system change, such as integrated care (Groves, 2013). We are now seeing the emergence of artificial intelligence in clinical practice, a new wave of telemedicine and improved consumer empowerment and choice. Information management is central to many of these changes: integrated care requires linked data; activity-based funding requires valid coding; EHRs require standards for documentation, retrieval and analysis; and decision support systems require standardised nomenclatures.
Information about health, healthcare and healthcare delivery has never been so valued and so valuable. However, to be useful, information must be relevant, reliable, standardised, accurate to a level fit for its purpose and presented in an intelligible form. This requires the special knowledge and skills that lie at the heart of the health information management profession.
However, in a changing world, things are much less certain than they appear. For example, the ethical oversight of how health-related information is used, as opposed to governance of its content, storage and communication, remains ill-defined. More fundamentally, the conceptual foundation of health information in terms of “diagnostic” constructs is creating limitations: Why should a medical diagnosis be privileged as the key descriptor of care, over disability or other aspects of the human experience? Who gets to say what matters, and how and by whom is that translated into meaningful information? These are important questions on which the health information management profession is well placed to lead. As we move an integrated, activity-funded, quality accountable healthcare environment, there is a compelling need for: Better descriptions of care and outcomes (e.g. capturing patient functioning and socioeconomic factors, not just diagnoses and procedures), information that empowers consumers, and ethical leadership on the nature and use of information.
Integrated care “involves the provision of seamless, effective and efficient care that reflects the whole of person’s health needs” (NSW Health, 2016), and this requires connecting the various types of care for a given patient or consumer of services. To connect care, we need to join up information about patients. This is not straightforward. Each service element typically has its own jealously defended way of describing care (e.g. Diagnostic Related Groups (DRGs), item numbers and occasions of service), and these typically use distinctive language and categories. What is needed is a stable way to describe people across time and space. In practice, this means moving beyond a “diagnostic” or “interventional” classification system to one that also recognises a wider range of needs, including functioning in terms of motor and cognitive capabilities and socioeconomic factors.
Similar needs arise from other emerging health system changes such as health literacy, personalised medicine and quality pricing. For instance, the prospect of financial penalties for poor quality care (IHPA, 2016) raises questions such as what is the threshold for making and documenting a diagnosis? Are the Australian Coding Standards (Australian Consortium for Classification Development, 2017) still up to the task? What do we do if doctors don’t write it down or call it something else? How do we resist perverse incentives and maintain ethical standards?
Threats and opportunities for the health information management profession
The health information management profession has unique and much-needed knowledge and skills in these areas, but even so, why should the health information management profession take on this potentially uncomfortable leadership role? Two fundamental reasons come to mind: Technological progress and economic incentives threaten the established career structure of the health information management profession. There is an exciting opportunity that the health information management profession is uniquely placed to exploit.
Threats
While in an activity-based funding environment increased reliance on clinical coded data should mean a golden future for health information management professionals, that future is far from certain. The looming world of linked EHRs, with standardised nomenclature and formats, will make the content of the record accessible to machine clinical coding with relatively inexpert human assistance (Pakhomov, 2006). Furthermore, while machine clinical coding may never achieve the quality of expert human clinical coding, it only needs to be good enough for the purpose for which it is used, such as funding. Given the inherent imprecision of casemix classifications and costing, health system managers may decide that an investment in gold standard, as opposed to “good enough” clinical coding, is not justifiable. Even if this does not eventuate, the EHR is well-positioned to evolve decision support systems and forcing functions such that clinicians do the majority of clinical coding, even if they are unaware that they are doing it. At least in Australian systems, it is very doubtful, in my opinion, that clinical documentation improvement 1 specialisation will become widespread or, if it does, it may not necessarily be the professional province of health information management professionals.
Similarly, the movement from paper-based records to EHRs has opened up the management of health information to IT specialists rather than to health information management professionals and potentially threatens the very concept of a centralised, collocated, expert health information management workforce.
Opportunities
However, the future also offers opportunities that reference the core skills of the health information management profession, including expertise in the classification, clinical coding, storage, analysis, reporting and use of health information (e.g. Jackson, 2014; Henderson, 2015). Underpinning this is an understanding of the logical, cognitive and technical foundations of health information.
To take a simple example, consider the central role of “diagnosis” or “intervention” in the practice, organisation and governance of the health system. At face value, diagnosis is a simple concept – an objective fact representable by a clinical code. In reality, the construct of diagnosis is multifaceted, with different meanings to the various people who wield the label. To a clinician, a diagnosis is typically a working hypothesis that represents a problem explained, implies a plan and provides something to communicate to the patient, the patient’s family and other clinicians. To the patient, it may mean a doubt removed, an implicit promise, a basis for planning, a validation and an anchor. To a family, it may represent an explanation or another layer of mystery, a call to action or be a rallying point. To managers, it is a basis for funding, a comparator for performance monitoring and a statistic.
In the context of health services, this multivalence puts great pressure on the informational item “diagnosis.” For example, in the context of integrated care, how relevant is a single “diagnosis”? How can disability, socioeconomic factors and other determinants of health, need and healthcare be linked in? How can the various interests be balanced and justice encouraged?
Unfortunately – at least outside of the health information management profession – there is very little consideration of these semantic and ethical aspects of health information. Yet, as the health system evolves, these aspects are emerging as critical determinants of the effectiveness of the health reform agenda.
Another opportunity is in the management of health information. In the author’s experience, much of the analytical space has been abandoned to performance analysts, casemix enthusiasts and the owners of spreadsheet software. The meaning of the underlying information – implicit as it usually is – is not seen as potentially problematic: trends are analysed, but little thought is devoted to the human reality to which the trend purportedly relates. Yet, as consumer empowerment, health literacy and supported self-management models develop, there is a need to make sense of and present information that is meaningful to diverse cultures and communities of interest. The time has come for the health information management profession – as custodians of the meaning embodied in the information – to formally reclaim leadership, or at least a place at the “high table,” on health analytics.
An expanded ethical dimension: Ethical use of health information
The Health Information Management Association of Australia Ltd (HIMAA) Principles of Professional Practice (HIMAA, 2015), which is a code of professional conduct for individuals, is largely directed towards honest, effective custody of information. However, beyond a broad statement requiring that members “contribute to the planning and proactive development of services which enable individuals within the community to achieve optimum health,” it is silent on the ethical use of health information for higher level purposes.
There is a clear need for ethical leadership in this space at a health system, as opposed to a purely professional, level. Quality costing requires honesty about outcomes, reasons and the use of the resulting information, with a clear commitment to beneficence. Activity-based funding requires a commitment to equity and a respect for variation. Recognition of the broad range of clinical activity, much of which escapes current classification systems, requires openness.
Obvious opportunities to progress this agenda, at all levels of the health system, include: leadership in the development of classification systems to support new, patient empowered, systems of care; development of patient-friendly and consumer-friendly ways to access health information; enriching reporting and analytical systems to ensure the broad range of interests is recognised; and leadership on the ethical collection, reporting and use of health information.
What should the health information management profession do?
Perhaps the greatest barrier to strengthening the leadership role of the health information management profession is its own modesty. Many otherwise well-educated, informed and interested health professionals and managers are unaware that subtle but important issues of health information management and its governance are relevant to the issues they are facing. This means that the profession must, without waiting to be asked, take the initiative by starting conversations, forging partnerships, researching, writing, publishing and making its knowledge and insights not only known but useful.
Relegation of the health information management profession “backstage” would be a missed opportunity not just for health information management professionals (both Health Information Managers and Clinical Coders) but also for the whole health system. It is time to become a nuisance!
Footnotes
Acknowledgement
The encouragement and assistance of Vera Dimitropoulos and Carol Loggie is gratefully acknowledged.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.