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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
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book Applied Interdisciplinary Theory in Health Informatics - Knowledge Base for Practitioners"
Applied Interdisciplinary Theory in Health Informatics
Knowledge Base for Practitioners
- Title
- Applied Interdisciplinary Theory in Health Informatics
- Subtitle
- Knowledge Base for Practitioners
- Authors
- Philip Scott
- Nicolette de Keizer
- Andrew Georgiou
- Publisher
- IOS Press BV
- Location
- Amsterdam
- Date
- 2019
- Language
- English
- License
- CC BY-NC 4.0
- ISBN
- 978-1-61499-991-1
- Size
- 16.0 x 24.0 cm
- Pages
- 242
- Category
- Informatik