7.3.1 ACT Health Information Management Systems 7.3.2 Development of a CDM register prototype 7.3.3 System requirement analysis for a CDM registry 7.4 CDM registry data quality control processes
7.5 Reports from a CDM register
7.6 CDM Registry: Management and governance 7.7 Prior Steps to implement a CDM register 7.8 Ethics and Privacy
7.9 Evaluation of a CDM register 7.10 Discussion
7.1 Introduction
This chapter presents the findings of the participant observations method and part of the key informants’ interviews. The key informants’ interview findings provide some opinions about the expected roles of a CDM register in strengthening management and prevention of chronic conditions. Chapter 4 discussed rest of the key informants’ findings. The findings of the key informants’ interview together with the participant observations help identify the design features of a CDM register. In addition to the data and technical elements, this chapter addresses the management and governance aspects of a CDM register.
The CDMU of ACT Health is building a CDM register. This chapter discusses findings in relation to the current project and policy guidelines of ACT Health to improve
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management and prevention of chronic conditions. The findings are cross referenced with the document Operating Principles and Technical Standards for Australian Clinical Quality Registries developed by the NHMRC Centre for Research Excellence in Patient Safety (CRE-PS) at Monash University in collaboration with the National e- Health Transition Authority (NEHTA), as a project under the Australian Commission on Safety and Quality in Health Care’s information strategy (Australian Commission on Safety and Quality in Health Care 2008).
7.2 Expected roles of a CDM register
This chapter uses two terms which describe a register. These are ‘clinical register’, and ‘clinical quality register’. A ‘clinical register’ refers to a database that systematically collect health-related information about patients with particular morbidities and procedures. However, a ‘clinical quality register’ collects key minimum data extracted from the clinical registers. The purpose of a ‘clinical quality register’ is to force quality improvement, and performance improvement of interventions for improved outcome. While ad hoc data collections are commonly pulled together to support quality improvement projects, ongoing clinical registers and clinical quality registers are not common in Australian health service organisations. According to a classification of registers developed for the Australian Commission on Safety and Quality in Health Care, a CDM register within a regional health service provider can be classified as a ‘clinical quality register’ (Australian Commission on Safety and Quality in Health Care 2008; Guda et al. 2008). A ‘CDM registry’ is an organisational unit that manages a CDM register (Last 2001). As discussed in Chapter 5, ACT Health services maintain their own service specific databases of variable strengths. The CDMU is currently building a CDM register within the ACT Health system. According to the ACT Chronic
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Disease Strategy, a CDM register is the central part of the CDM program to optimise care coordination and secondary prevention of chronic conditions (ACT Health 2008a).
The key informants expressed their perceived views about the roles of a CDM register, and these provide important directions to designing a CDM register. One of its roles is to classify patient population according to their disease conditions. This classification helps providers and patients in the provision of proactive care through reminders and prompts.
It [CDM register] allows the stratification of risk and therefore the flagging of
individuals at particular risk for clinicians, and for those individuals, the clients, to know where they sit in the general scheme of things. (Clinician Manager).
According to the same clinician manager, a CDM register assists organisational
planning for chronic care services in relation to existing resources. The register data also benchmark chronic care, and help compare chronic care across organisations.
Obviously it also helps with planning in terms of … at a higher macro level health planning in terms of what is the burden of at-risk individuals within that? What does that mean in terms of service planning with respect to resources needed, e.g. persons or things? It’s also a nice mechanism to look at cross-jurisdiction or cross-health service comparisons. If you don’t have it you can’t do it. So it helps with those comparisons and
therefore potentially benchmarking, because otherwise you just have no basis. (Clinician
Manager).
The periodic reports from a register inform clinicians and management staff about the extent of disease burden. A register can report on achievement of patient outcomes and chronic care performances.
I think in terms of establishing an evidence base both on an individual patient level, but on a performance level for our service and a performance level for the health indicators
for a community, I think it’s [CDM register] an incredibly powerful tool. (Senior
Executive).
A CDM register adds value in performance management of chronic care. It strengthens clinical leadership through the implementation of evidence-based guidelines in practice. A CDM register monitors outcomes for a cohort of patients.
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It [CDM register] assists clinicians and patients to achieve optimal care. So we build in known clinical protocols for what are the milestones of care for a particular condition over time and the register helps us optimise the achievement of those milestones for a cohort of patients. So it provides clinical feedback to the clinician and it also acts as a reminder to patients about what the steps of care are that they should require. So I think that’s the first thing. It’s a methodical way, a systematic way of improving compliance with clinical protocols. The other sort of role I guess it has is if there is persistent variation. So if for some reason patients are not achieving their clinical milestones it might lead to a quality improvement or a performance management process that seeks to
overcome those barriers. (Senior Executive).
According to the above quote, a CDM register leads quality improvement processes. It identifies the variations in relation to care delivery processes or outcomes. A CDM register indirectly strengthens the preparation and implementation of care plans to achieve outcomes. The care plans connect patients and the relevant service provider in achieving planned care and targeted outcomes.
The Register can ... I guess you need to look at it at two levels, at the individual level and I guess at the disease or population level. We have, I guess, the potential to assist in the management of individual patients making sure they get ... the care plan is met in the timeframes that are desired for best practice and best care. So at the individual level of making sure that they attend all their tests, sending reminders, being able to provide a picture of care to their GPs who can then follow up on gaps or can ... or the Register may flag, not individual results. An individual result the doctor might go, “Yep, whatever,” but there may be another result elsewhere that when combined with one the GP has seen may raise a flag. So I think there’s an enormous benefit for individual patient
management. (Non clinician).
The above quote displays the role of a register to build communication and coordination between care delivery organisations. However, the communication between service units is a challenge (see Chapter 4). The government’s future e-Health initiative is viewed as improving communications using clinical data between hospital and community services. At this moment, the output from a register can benchmark outcomes, which will eventually have an impact on coordination between service organisations.
I think it’s some real thought about actually how you integrate those communications. But also then again on how, if you have a register, we measure the benchmarking against those so that coordination hopefully will improve, then outcomes for patients, and you
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The above findings suggest that a CDM register has significant roles at individual patient level as well as at health system level. A functional CDM register generates reports on patients’ characteristics, their disease conditions, and outcomes. It thus helps service delivery organisations to design and administer appropriate prevention
initiatives. A CDM register brings evidence-based guidelines into the clinical practice. Data from a CDM register can evidence how a health service organisation delivers chronic care, and compare performances across organisations. A CDM register helps reminding clinicians, and thus strengthen care coordination and communications between service units. A register combines patients with the health system, and thereby empowers patients to achieve self-management goals and supports.