BRIDGING THE INFORMATION GAP : Supporting Evidence-Based Medicine and Shared Decision-Making through Information Systems

Sammanfattning: Practicing evidence-based medicine (EBM) and shared decision-making (SDM)along the patient process is important in today's healthcare environment, as thesemodels of care offer a way to improve quality and safety of care, patient satisfaction,and reduce costs. EBM is the conscientious and judicious use of current best medicalevidence in conjunction with clinical expertise. It also includes taking into accountpatient values and preferences to guide decisions about the care of individual patients.SDM offers a process that guides how a healthcare professional (e.g., a physicianor a nurse) and a patient jointly can participate in a decision after incorporatingthe body of evidence (the options, benefits and harms) and considering the patient'svalues and preferences.The degree to which healthcare professionals can practice EBM and SDM is dependentupon the availability of information about the patient (e.g., medical diagnosis,therapies as well as laboratory and administrative information) and medical evidence(such as medical guidelines). Patient information is a prerequisite for making decisionsabout the care of individual patients and it is evidence-based medicalknowledge, clinical expertise as well as patient values and preferences that guidethese decisions. Moreover, for patients to be able to communicate values and preferencesas well as participate effectively in their own care, they need to have a basicunderstanding of their condition and treatment options, and the consequences ofeach. Hence, they need access to the same information streams—in "patientaccessible"form—as their physician(s) and care team throughout their journey (process)in healthcare. However, making the right decisions about the care of individualpatients at the right time and place is a challenge for healthcare professionals. Due tointeroperability issues, existing information systems do not support a seamless flowof patient information along the patient process. Healthcare professionals are thereforeunable to easily access up-to-date information about the patient at the right timeand place. The situation is complicated further by the fragmentation of medical evidencein different repositories and its presentation by diverse providers, each withunique ideas about how information should be organized and how search enginesshould function. Limited or no access to relevant patient information and the bestmedical evidence about the benefits and risks of treatment options can result inflawed decisions and, more seriously, the suffering of patients. The situation also affectsSDM. If patients are not informed about their health condition, treatment options,benefits and risks or not given high quality information, e.g., becausehealthcare professionals do not have access to the best evidence, patients will be unIIable to assess 'what it is important to them', or they will make inadequate decisionsabout key issues. Consequently, it is almost impossible to practice EBM and SDM ineveryday clinical care.For EBM and SDM to serve their purpose, healthcare professionals and patients needinformation systems that provide quick and trouble-free access to all-round information.They also need information systems that can influence the patient/physicianrelationship and facilitate their pursuance of shared goals in the healthcare process,taking into account both illness and personal experience. Hence, based on a qualitativeapproach, this thesis proposes recommendations regarding the redesign of futurehealthcare information systems in ways that will facilitate, rather than hinder,the access to relevant information. One important recommendation identified is thatfuture healthcare information systems must support the core characteristics of EBMand SDM, in an integrated manner, and using the one without the other is notenough. However, such support requires the adoption of a process view on informationsystem development based on the patient's process. A process-oriented approachwith supporting information systems is thus vital for the support of an evidence-based practice where the patient is an important and active collaborator.Moreover, the challenges identified with regard to information system support arenot exclusively technical. Organizational culture, and the attitudes of healthcare professionalsto patient involvement are some of the biggest challenges facing healthcareorganizations.