These findings offer a contemporary perspective as a conceptual basis for future empirical investigation of the advantages and disadvantages of different methods of QES. It is hoped that this will inform appropriate selection of QES approaches.
The presented revision of the Socratic approach is the result of a joint effort of experts in the field of ethics and HTA. Consensus is reached in the expert panel on an approach that is considered to be more clear, comprehensive, and applicable for addressing ethical issues in HTA.
Brereton et al 2What is already known about the topic? Internationally, stakeholder (i.e. lay people and professionals with an interest in the topic) involvement in research and Health Technology Assessment (HTA) is advocated. Stakeholder involvement has the potential to ensure key shared priorities are addressed and research findings translated into practice. The philosophy and views about the best approaches for stakeholder involvement differ across Europe. Stakeholder consultation is seen as one of the most appropriate approaches to involvement in some countries. However, qualitative research is viewed as the most appropriate method of stakeholder involvement in other European countries. Few reports exist about stakeholder involvement in palliative care and the ways this informs decision making in HTA.
What this paper adds? This paper demonstrates that it is possible to involve lay (e.g. patients/ex-patients; family carers/excarers; family members and members of public organisations or groups) and professional (e.g. service commissioners, health and social care professionals / academics working in palliative care) stakeholders in HTA. Indeed, stakeholders, even patients and families undergoing palliative care, can be involved in HTA in a range of ways according to local contexts. Several approaches to stakeholder involvement in palliative care research are shown to be feasible and effective ways to identify stakeholder priorities. Despite the use of different methods of stakeholder involvement, stakeholders highlight a number of issues in palliative care that are 'common' across countries. The researchers used the issues raised to inform decision making for project development. Notably the issues raised informed the focus of the main HTA question and sub questions used in the assessment of specific aspects.
Implications for practice, theory or policy? Different methods of stakeholder involvement may be required for different palliative care stakeholder groups in different countries.
Brereton et al3 Lay and professional stakeholder involvement is both feasible and worthwhile early in project development as this can identify key issues from the perspectives of service users and providers. Further guidance for stakeholder involvement in palliative care research is needed to ensure that policy and service development is more responsive to the needs of service users and providers.
Brereton et al 4 AbstractBackground: Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in
HTA by and large is a process of value judgments. However, the preponderance of value judgments does not render HTA biased or flawed. On the contrary they are basic elements of the HTA process. Acknowledging and explicitly addressing value judgments may improve the accountability of HTA.
Objectives:The aim of this study was to analyze and describe process and outcomes of two pilot assessments based on the HTA Core Model, discuss the applicability of the model, and explore areas of development. Methods: Data were gathered from HTA Core Model and pilot Core HTA documents, their validation feedback, questionnaires to investigators, meeting minutes, emails, and discussions in the coordinating team meetings in the Finnish Office for Health Technology Assessment (FINOHTA). Results: The elementary structure of the HTA Core Model proved useful in preparing HTAs. Clear scoping and good coordination in timing and distribution of work would probably help improve applicability and avoid duplication of work. Conclusions: The HTA Core Model can be developed into a platform that enables and encourages true HTA collaboration in terms of distribution of work and maximum utilization of a common pool of structured HTA information for national HTA reports.
ACP should be tailored to patients' value, culture and preferences. A significant proportion of patients, however, do not want to be involved in end of life decisions. Frail elderly patients, in particular, are not inclined to interrupt dialysis, despite poor quality of life or a poor prognosis.
BackgroundThe importance of respecting patients’ preferences when making treatment decisions is increasingly recognized. Efficiently retrieving papers from the scientific literature reporting on the presence and nature of such preferences can help to achieve this goal. The objective of this study was to create a search filter for PubMed to help retrieve evidence on patient preferences for treatment outcomes.MethodsA total of 27 journals were hand-searched for articles on patient preferences for treatment outcomes published in 2011. Selected articles served as a reference set. To develop optimal search strategies to retrieve this set, all articles in the reference set were randomly split into a development and a validation set. MeSH-terms and keywords retrieved using PubReMiner were tested individually and as combinations in PubMed and evaluated for retrieval performance (e.g. sensitivity (Se) and specificity (Sp)).ResultsOf 8238 articles, 22 were considered to report empirical evidence on patient preferences for specific treatment outcomes. The best search filters reached Se of 100 % [95 % CI 100-100] with Sp of 95 % [94–95 %] and Sp of 97 % [97–98 %] with 75 % Se [74–76 %]. In the validation set these queries reached values of Se of 90 % [89–91 %] with Sp 94 % [93–95 %] and Se of 80 % [79–81 %] with Sp of 97 % [96–96 %], respectively.ConclusionsNarrow and broad search queries were developed which can help in retrieving literature on patient preferences for treatment outcomes. Identifying such evidence may in turn enhance the incorporation of patient preferences in clinical decision making and health technology assessment.Electronic supplementary materialThe online version of this article (doi:10.1186/s12874-016-0192-5) contains supplementary material, which is available to authorized users.
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