A generic tool for development of decision aids based on clinical practice guidelines

Raats, C.J.I.; Veenendaal, Haske van; Versluijs, Martine M.; Burgers, Jako

doi:10.1016/j.pec.2008.07.038

Cited by 47 publications

(29 citation statements)

References 16 publications

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“…Instead of gold standards to be followed by doctors, guidelines are reimagined as decision aids that provide (standardized) information on various options that doctors and their patients discuss, interpret, modify or ignore (Boivin et al, 2009;Van der Weijden et al, 2013). Guideline development organizations are producing additional tools such as patient versions and patient decisions aids to encourage the involvement of individual consumers to weighing their own options in clinical practice (Raats et al, 2008). Patient organizations express a wish for guidelines not to be 'a forcing or demanding instrument' but 'primarily a tool to start a dialogue with the patient' (personal communication, PtRep1), so as to improve shared decision-making (PtRep4, interview 27-08-2010).…”

Section: Consumer Choice: Personalizing Standards and Carementioning

confidence: 99%

Three Conceptual Models of Patient and Public Involvement in Standard-setting: From Abstract Principles to Complex Practice

Knaapen

Lehoux

2016

Science as Culture

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Clinical practice guidelines have been critiqued for prescribing standardized care that neglects patients' personal circumstances and knowledge in health care decisions. To make care more patient centred, standard-setters are urged to involve patients and the public in guideline development and use. Despite widespread principled support for such Patient and Public Involvement (PPI), the underlying principles guiding PPI in standardization of care are mired on confusion and contradiction. Based on the PPI literature in general, and informed by empirical research on guideline development, it is possible to identify three rationales that justify PPI in clinical standard setting. Each rationale gives rise to a conceptual model which outlines a distinct purpose of participation, who is to be included, and what they are expected to contribute. The Consumer Choice model aims to involve autonomous consumers to personalize clinical care. The Democratic Voice model aims for health care recommendations to better reflect collective values of citizens. The Lay Expertise model aims to re-contextualize universal evidence by including experiential patient knowledge. However, these models can and should not function as 'Gold Standards' to be consistently followed in practice. First, the models rely on two distinct types of representation, resulting in contradictory notions of how to be a good representative. Second, imposing models on practice requires a top-down control that is practically and politically problematic. Not only is control difficult to achieve, it may compromise the participatory ideal of participants co-determine practice, and may result in excluding the values and views of 'real' patients and public entirely.

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Section: Consumer Choice: Personalizing Standards and Carementioning

confidence: 99%

Three Conceptual Models of Patient and Public Involvement in Standard-setting: From Abstract Principles to Complex Practice

Knaapen

Lehoux

2016

Science as Culture

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“…Our institute participated in their development. 14 We drew a number of lessons. First of all, it took a long time (5 years) to collect the information.…”

Section: Studymentioning

confidence: 99%

E-health Applications and Services for Patient Empowerment: Directions for Best Practices in The Netherlands

Alpay¹,

Henkemans²,

Otten³

et al. 2010

Telemedicine and e-Health

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Objective: E-health may enable the empowerment process for patients, particularly the chronically ill. However, e-health is not always designed with the requirements of patient empowerment in mind. Drawing on evidence-based e-health studies, we propose directions for best practices to develop e-health that promotes patient empowerment. Methods: The concept of patient empowerment in the Dutch setting is discussed first. The prerequisites for patient empowerment are then described and translated into empowerment areas relevant to e-health. Materials: We reviewed Dutch e-health studies that provide insights into what works, and what does not, in e-health. Results: On the basis of the lessons learned from the studies, we propose directions for best practices to develop e-health that promotes patient empowerment. These directions cover various aspects, such as the design and implementation of e-health, its information content and usability, awareness, and acceptance. The studies also indicate the difficulty of establishing that e-health is really dedicated to patient empowerment. Conclusions: Despite the body of knowledge about patient empowerment, as well as the technological visibility of e-health, evidence for best practices in general and for patient empowerment in particular is scarce. We call for a more systematic evaluation of e-health for patient empowerment and more reliable evidence. Beyond the organizational and technical issues involved in e-health, there is also a need to demonstrate its practical benefits to patients. The Netherlands is active in developing sustainable e-health. National initiatives are now in place to support the processes with the aim of establishing the required evidence-based best practices.

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“…They are rather well developed on providing information about options and presenting probabilities, but less so on eliciting values and issues such as guiding or coaching. Interestingly, the evidence and options for these patient decision aids were directly distracted from clinical practice guidelines that had just been launched [16]. They were developed by independent committees that were closely linked to the clinical practice guideline committees, with representatives of patient organisations, guideline developers and the scientific organisations of general practitioners and medical specialists.…”

Section: Milestones To Get Sdm Implemented Into the National Health Cmentioning

confidence: 99%

Shared decision making in the Netherlands, is the time ripe for nationwide, structural implementation?

Weijden

Veenendaal

Drenthen

et al. 2011

Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheit

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A generic tool for development of decision aids based on clinical practice guidelines

Cited by 47 publications

References 16 publications

Three Conceptual Models of Patient and Public Involvement in Standard-setting: From Abstract Principles to Complex Practice

Three Conceptual Models of Patient and Public Involvement in Standard-setting: From Abstract Principles to Complex Practice

E-health Applications and Services for Patient Empowerment: Directions for Best Practices in The Netherlands

Shared decision making in the Netherlands, is the time ripe for nationwide, structural implementation?

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