Data Science In Healthcare Care HIIM 233 PDF

UNIVERSITY OF HAIL COLLAGE OF PUBLIC HEALTH AND HEALTH INFORMATICS DEPT. OF HEALTH INFORMATICS DATA SCIENCE IN HEALTH CARE HIIM 233 Chapter 3 Standards in Healthcare Data Instructors: Dr. Muteb Alshammri MSc. Ibrahim A. Ibrahim Introduction ▪ Our industrialised societies are heavily dependent on sta...

UNIVERSITY OF HAIL COLLAGE OF PUBLIC HEALTH AND HEALTH INFORMATICS DEPT. OF HEALTH INFORMATICS DATA SCIENCE IN HEALTH CARE HIIM 233 Chapter 3 Standards in Healthcare Data Instructors: Dr. Muteb Alshammri MSc. Ibrahim A. Ibrahim Introduction ▪ Our industrialised societies are heavily dependent on standards. ▪ That we can safely assume that electric plugs of a certain kind, independently of their manufacturer, fit into certain sockets of certain types and not into sockets of other types is just one example how manufacturing is guided by standards. ▪ The benefit is obvious: complex technical artefacts can be assembled out of smaller components. Conformance to standards facilitates their exchange and substitutability, creates independence from manufacturers, eases competition and generates interoperability across borders. Standardisation of commodities and consumer goods makes them more easy to compare, to categorise and, consequently, to trade. In addition, compliance to safety standards will increase trust in the safe operation of components under predefined conditions. ▪ The authors of this chapter argue that standardisation is equally required for data in general and clini- cal data in particular, for which safety, exchangeability and interoperability is a supe- rior aim, in particular with regard to the emerging field of data science. 2 DATA AND REALITY ▪ Most people share a tacit understanding of the meaning of the term “data”. ▪ Nevertheless it is helpful to elucidate what data are and what they denote. We here understand data as abstract entities in information systems, which normally denote (classes of) real objects. ▪ The notion of denotation – derived from basic ideas of semiotics – is crucial for data communication and interoperability. Assuming a certain Universal Resource Identifier, URIp denotes a particular person P. First, this implies that URIp – the data item – is distinct from P – the referent. If an agent X uses URIp for passing information to agent Y, the latter one is supposed to refer to the same person P, as long as enough information is attached to this URI, which is sufficient to clearly identify that person. ▪ Hence, knowledge is linked to a shared standard representation of reality, which enables a common interpretation of the data that describe the objects in a given domain. In natural science and engineering (including healthcare and biomedical research) such a consensus on (physical) reality is mostly uncontroversial. 3 Aspects Of Terminology, Syntax, Semantics And Pragmatics ▪ The following concepts, borrowed from human language studies, also seem useful to describe different aspects of clinical data and, in consequence, different types of standards to address them. It requires that we see the application of data standards as governed by similar principles as are natural or synthetic languages: ▪ Reference terminology: A set of symbols, both standardised terms from natural language and abstract symbols from coding systems. Symbols should be unique and follow Web standards (IRIs – International Resource Identifiers, URIs). Standardised terms should be human–understandable, unique, self–explaining and non–ambiguous labels. Ideally, terminology items carry formal or textual definitions. ▪ Syntax: the set of rules, principles, and processes that govern the structure of sentences in a given language. In a data standard, syntactic rules determine how items in a vocabulary can be combined. 4 ▪ Semantics: the relation between symbols and what they stand for in reality (denotation). Here we have to take care not to mix up different artefacts, especially if they are similarly labelled. E.g., an information model standard on arterial blood pressure standardises a data structure to be filled when arterial blood pressure is recorded. ▪ Pragmatics: The situational context in which symbols are used. A typical case is the embedding of a disease mention in a composed expression. “Suspected asthma” has a completely different meaning compared to “asthma prevention”, “check for asthma” or “severe asthma”. Only in the latter case it can be safely assumed that there is an instance of asthma; and this informa- tion can be safely used, e.g. for computerised decision support for asthma patients. 5 Implementation of standards ▪ Standards will only be implemented if they serve an agreed and observable purpose. Such a purpose can be derived from different sources, such as commercial benefits in the marketplace, economic benefits within an organization, or societal benefits as laid down in laws and regulations. For healthcare data the benefits of implementing standards is not always obvious to the individual user recording the data, which makes it hard to establish a common purpose. ▪ In healthcare, implementation of data standards will take place with one (or a combination) of three very distinct purposes in mind: 1) To improve the outcome of the diagnostic and treatment process of the individual patient involving (a team of) healthcare professionals, e.g.: Computer-based clinical guidance based on patient characteristics has prompted the standardised recording of several parameters in breast cancer diagnostics to support the cre- ation of optimal personal treatment plans. 2) To serve the purpose of the local/national health system (including reimburse- ment, quality reporting, public health, health technology assessment, clinical research, etc.), e.g.: Monitoring the quality of care provided to diabetes patients has led to structured recording of key process indicators, as well as proximal and distal outcomes. 3) To create an opportunity for enhanced commercial interest in investing in solu- tions needed by patients and/or professionals in health management and the delivery of healthcare services, e.g.: The diversity of equipment in a typical radi- ology department has led to the early and almost full implementation of DICOM standards for digital imaging, so that multiple vendors have access to the market for medical imaging modalities. 6 Tools And Standards For Standards ▪ Interoperability tools play a critical role in this context as they hold promise of optimizing the entire interoperability standards lifecycle as introduced in the eHealth Interop report: Identification of a use case or set of requirements Selection of supporting interoperability standards, with the selection of options Implementation, conformance testing, certification Deployment in projects, which closes the feedback loop from the real world. 7 The EHEALTH Standards Roadmap ▪ The eStandards initiative (2015–2017), was funded by the European Commission to develop a roadmap fostering the development and adoption of eHealth stan- dards and specifications. Stakeholders in Europe and beyond joined forces to build consensus on how to advance interoperability across health-related data standards in order to accelerate knowledge sharing and to promote wide and rapid adoption of standards and profiles. ▪ The eStandards compass reinforces that respect for the differing perspectives of the stakeholders that contribute to such trusted flow of data is a critical success factor. ▪ Furthermore, dynamic flow of data is enabled by a reus- able set of standardised eHealth artefacts; otherwise data will not flow between eHealth solutions and the people and organisations that use them, at least not at a reasonable cost. ▪ Finally, stakeholders co-create, govern and align their solutions along the eStandards life cycle. 9 Trust And Flow The Basis of Well-functioning Health Systems ▪ The flow of trusted data is the basis of well-functioning health systems, driving healthcare delivery based on relevant information and knowledge at the point of need. ▪ The role of standards is here seen as core to achieving those dual needs. ▪ Trust and flow are grounded in the acceptance of the following key changes future healthcare systems have to embrace: Increasing need, expectation, and cost of healthcare resulting from ageing populations, increased medical competence, and high investment in new drugs and technologies; Change in doctor-patient relationship, in which patients play a much more active role in their care, which requires better access to information about their health and the preferred options for care and treatment; Increased demand for home-based and mobile care available ‘just in time’; 10 ESTANDARDS Compass To Respect Different Perspectives Of Stakeholders ▪ the eStandards compass helps Standards Developing Organizations and their constituencies of eHealth stakeholders to actively consider the differing perspectives of the key players involved in production, regulation and use of standards. ▪ The compass is also integral to the roadmap- ping process, which helps organizations better understand the needs of the people who will ultimately use the standard. ▪ Keeping the compass up-to-date, calibrated to global trends and local needs, standards creators and end users must be supported to engage together with the four perspectives of the compass and the associated dynamics. 11 CGA MODEL Co-creation, Governance And Alignment ▪ Co-creation involves notably all actors represented under the four primary per- spectives of the eStandards Compass: citizens (including patients), the health workforce, the health system, and vendors. Co-creation includes: Co-design of services – co-planning of health and social policy, co-prioritisation of services and co-financing of services, co-commissioning; Co-delivery of services – co-managing and co-performing services Co-assessment – co-monitoring and co-evaluation of services. ▪ The concept of co-creation goes beyond “working together” to acknowledging the difficulties in healthcare to work together across a wide spectrum of players building provisions to address conflicts of interests and opinions up front. 12 ▪ Governance Standards are very often closely linked to the governance of health- care systems and healthcare workflows. ‘Governance’ is used in a wide sense, much as it is used by the WHO, who describes governance in the health sector as covering a wide range of steering and rule-making related functions carried out by governments and decisions makers as they seek to achieve national health policy objectives that are conducive to universal health coverage. ▪ Governance is therefore both a regulatory and a political process that involves balancing competing influences and demands. It includes: Maintaining the strategic direction of policy development and implementation Detecting and correcting undesirable trends and distortions Articulating the case for health in national development Regulating the behaviour of a wide range of health and care actors Establishing transparent and effective accountability mechanisms. 13 ▪ The concept of alignment within the CGA model is the element, which drives the cyclical and flowing nature of CGA. It is the element that ensures that changes in the perceptions of stakeholders or changes in governance are accommodated into projects and initiatives already underway. ▪ A key requirement of including alignment activi- ties is to ensure that appropriate monitoring and feedback systems have been set up to make sure that relevant changes can be captured and addressed. 14 THE ESTANDARDS ROADMAP METHODOLOGY AT WORK 1) Based on the eStandards Compass concept, the actors from across the healthcare spectrum are identified who may have an interest in the way in which a specific set of standards-based solutions is used. Appropriate ways of educating them about the value of standards are developed as well as suitable ways of capturing and addressing their needs. Feedback and acknowledgement is crucial, other- wise the well of co-operation may dry up. 2) Existing Use Cases, Roadmap Components, and standardised artefacts are assessed as well as the extent to which they are able to drive trust and flow of data, anticipating what is needed to move to the next stage and beyond. 3) Once the needs have been identified and the compass points calibrated, a co- creation-governancealignment process is developed. This requires the develop- ment of co-creation tools, looking beyond the usual players to identify fields where lessons may be learned and finding ways of collaborative work and development. The validity of the governance frameworks on which an organisation is built and runs has to be examined. If no longer fit for purpose, they need to be challenged and rules have to be sought and adapted to fit needs and capacity in dynamic flex- ible ways. All this requires engagement in a constant flow of alignment, where the parties in co-creation are adapted to fit the needs, where governance structures are challenged and where new models of alignment can be embraced (Fig. 3.2). 15 Fig. 3.2 Methodology for eStandards roadmap development 16 CONCLUSION ▪ This chapter highlighted the need of data standards for making clinical data interoperable and shareable in a virtuous cicle of continuous improvement. The dif- ferent kinds of standards like terminologies, ontologies and information models were introduced. An overview of existing standards was given and quality and implementation issues were addressed. ▪ The eStandards methodology combined the principles of trust and flow as the basis of well- functioning health systems, a compass of perspectives to inform the needs for trusted flow of data, roadmap components to identify supporting stan- dardised artefacts, and the co-creation, governance, alignment (CGA) model to define the actions to be taken or supported by Standards Developing Organisations. It is expected that the application of the eStandards methodology in an iterative way, aligning reusable interoperability components, specification and tools, with dynamic governance, will advance health data interoperability at a lower cost. 18