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Numerous reports to the Parliament of Norway all point to shared decision-making and clinical decision support as important tools to improve the quality of the health services in Norway. On request from the Ministry of Health, the National Knowledge Center for the Health Services in Norway has finalised and tested a basic part of an advanced treatment optimisation system.
The methods and technologies developed can be used to construct support systems for any kind of treatment decision. The pilot area was bipolar disorder. In this complex and often unpredictable disorder, patients and clinicians face a number of demanding treatment decisions representative of the challenging dilemmas faced by patients and clinicians in other conditions.
The system includes features allowing different levels and modes of participation in shared decision-making and in use of the system, dependent on the users´ preferences. The system monitors patient-centred outcomes over time and estimates future effects of available treatments.
In contrast to patient decision aids that support irreversible decisions, this system also supports ongoing decisions. The instrument is designed as a clinical decision support system, a self-management system, and as a tool for communication and reflection. The system provides continuous process support and a loop of forecasting, action, assessment, and new forecasting. It does not eliminate the role of healthcare professionals. Instead, it simplifies and streamlines the processing and interpretation of information and preferences, and provides room for substantial discussions and shared decision-making. In the context of this project, the system is also used as a research tool.
The system should preferably be used within a shared decision-making context (before, during and between consultations), but can also be used by patients alone, and for self-help. It is both a communication tool for patients, clinicians and caregivers, and an intervention improving health.
Similar systems are currently being developed within a number of other health conditions.
The frameworks applied includes normative decision analysis, multi-criteria decision analysis, shared decision-making and single subject research designs. It offers a common platform for patients, healthcare professionals and caregivers enabling patient involvement and self-help.
There are three versions of the system:
- A freely available version not requiring information from patients
- A version requiring login, personalising treatment options, treatment outcomes, and what the patient can expect from the different treatment options, based on information about and from the patient.
- A full version with Timeline panels supporting the monitoring and optimalisation of treatment over time.
This report summarises 20 crucial challenges concerning shared decision-making and follow-up of treatment, relevant to health conditions in general. We describe how the system addresses each of these 20 challenges. Finally, we summarise the results of extensive testing of the basic components of the system.
The generator for decision and monitoring support systems that has been developed enables easy production of this kind of system for a wide array of health problems. Each patient is given access to a standard version of the system made for her condition. The original system is gradually personalised and tailored to the individual patient until it constitutes a knowledge-, decision-, reflection- and collaboration tool for each individual patient.
The testing conducted has included patients, specialists in psychiatry, junior doctors specialising in psychiatry, non-patients, general practitioners, nurses and other healthcare personnel. Despite the extensive functionality of the system, the results indicate that this approach is considerably more user-friendly than what is the average for comparable systems. Clinical testing, and trials for the login- and long-term versions of the system are necessary to clarify whether the approach improves compliance and subjective and objective healthcare outcomes, decreases the workload on clinicians, and increases the involvement and empowerment of patients.
In conclusion, the system offers a common platform integrating practical and pragmatic communication, long-term knowledge management, and user involvement, within sound, extensive, acknowledged and consistent technological and theoretical framework.