Seite - 116 - in Applied Interdisciplinary Theory in Health Informatics - Knowledge Base for Practitioners

1.6. Values clarification though patient decision aids For the alignment of medical decisions to an individual patient’s (often implicit) values and personal circumstances, patients need to clarify their personal values and preferences. This can be challenging. Moreover, potential outcomes and risks associated with the medical options to which a patient is eligible, can be hard to imagine or hard to verbalize, and the available options often involve important, high-stakes and highly personal trade-offs, such as those between quality and quantity of life, which cannot be solved in a straightforward manner. How much future quantity of life would you be willing to “trade” for a better quality of life right now, for example? Taking people’s values into account is even more important for specific groups at risk, such as people with multimorbidities or older people, for whom no or limited clinical evidence is available. Guidelines for treatments are usually based on studies in which those groups were excluded [23], resulting in a lack of detailed information about the optimal treatment. Some PtDAs do not only provide information, but also include additional content aimed at supporting patients to clarify their personal values and preferences: Values Clarification Methods (VCMs). Every tool that provides patients better insights about their values can be considered a boost, as these tools make participants more competent in processing and weighing their values. From a boosting perspective [3] it is important to systematically analyze which competences patients (and/or healthcare providers) are naturally possessing or lacking in this regard and to create tools (boosts) to augment or overcome these. 2. Explanation of success or failure in health informatics interventions for SDM 2.1. Success factors and failures of patient decision aid design and evaluation The design and evaluation of most PtDAs is heavily informed by the International Patient Decision Aid Standards [IPDAS; 24]. The IPDAS collaboration is a group of international researchers, practitioners and stakeholders who have outlined a systematic process for PtDA development and evaluation, as well as specific recommendations, e.g., information presentation and values clarification methods (VCMs). It comes with a set of quality criteria and reporting standards to help ensure that PtDAs are of high quality, accurate and unbiased. This is essential because PtDAs can have an important influence on decisions made [16]. The IPDAS quality criteria are related to the following dimensions: 1) information provision, 2) presentation of outcome probabilities (risk communication), 3) clarifying and expressing values (VCMs), 4) decision guidance, 5) using a systematic development process, 6) using evidence, 7) disclosure and transparency (COI), 8) use of plain language, 9) and evaluation of PtDA effectiveness. The development process to a large extent builds on the Ottawa Decision Support Framework (ODSF) which is guided by expectancy value, decisional conflict, and social support theories, but is mostly consensus based [24]. It describes PtDA development as an iterative process which includes extensive involvement of and testing with patients and healthcare providers. The IPDAS recommendations and quality criteria draw on systematic reviews of available evidence, including those for information provision and risk communication and values clarification. These recommendations are currently being updated. M.deVriesetal. /FosteringSharedDecisionMakingwithHealth Informatics Interventions116