The Experts below are selected from a list of 118236 Experts worldwide ranked by ideXlab platform
Gerold Stucki - One of the best experts on this subject based on the ideXlab platform.
-
a structured approach to capture the lived experience of spinal cord injury data model and questionnaire of the international spinal cord injury community survey
American Journal of Physical Medicine & Rehabilitation, 2017Co-Authors: Christine Fekete, Marcel W M Post, Jerome Bickenbach, James W Middleton, Birgit Prodinger, Melissa Selb, Gerold StuckiAbstract:The International Spinal Cord Injury (InSCI) community survey has been developed to collect internationally comparable data on the lived experience of persons with spinal cord injury (SCI) in all 6 WHO regions. The InSCI survey provides a crucial first step to Generate Evidence on functioning, health maintenance, and subjective well-being in persons with SCI globally. A major challenge in setting up the InSCI community survey was to develop a data model and questionnaire that comprehensively captures what matters to people and, at the same time, is feasible and parsimonious in terms of participant's burden. This paper outlines the components of the InSCI data model and presents the question selection to operationalize the data model along the 4 guiding principles of efficiency, feasibility, comparability, and truth and discrimination. The data model consists of 6 components operationalized with 125 questions including functioning (n = 28 body functions and structures; n = 42 activities and participation), contextual factors (n = 26 environmental; n = 19 personal factors), lesion characteristics (n = 2), and appraisal of health and well-being (n = 8). The InSCI questionnaire presents an efficient and feasible solution with satisfying comparability to other populations; however, its validity and reliability still needs to be confirmed.
Christine Fekete - One of the best experts on this subject based on the ideXlab platform.
-
a structured approach to capture the lived experience of spinal cord injury data model and questionnaire of the international spinal cord injury community survey
American Journal of Physical Medicine & Rehabilitation, 2017Co-Authors: Christine Fekete, Marcel W M Post, Jerome Bickenbach, James W Middleton, Birgit Prodinger, Melissa Selb, Gerold StuckiAbstract:The International Spinal Cord Injury (InSCI) community survey has been developed to collect internationally comparable data on the lived experience of persons with spinal cord injury (SCI) in all 6 WHO regions. The InSCI survey provides a crucial first step to Generate Evidence on functioning, health maintenance, and subjective well-being in persons with SCI globally. A major challenge in setting up the InSCI community survey was to develop a data model and questionnaire that comprehensively captures what matters to people and, at the same time, is feasible and parsimonious in terms of participant's burden. This paper outlines the components of the InSCI data model and presents the question selection to operationalize the data model along the 4 guiding principles of efficiency, feasibility, comparability, and truth and discrimination. The data model consists of 6 components operationalized with 125 questions including functioning (n = 28 body functions and structures; n = 42 activities and participation), contextual factors (n = 26 environmental; n = 19 personal factors), lesion characteristics (n = 2), and appraisal of health and well-being (n = 8). The InSCI questionnaire presents an efficient and feasible solution with satisfying comparability to other populations; however, its validity and reliability still needs to be confirmed.
Fernando Martinsanchez - One of the best experts on this subject based on the ideXlab platform.
-
tasome validating a framework to Generate Evidence about health outcomes from social media use
Medical Informatics Europe, 2018Co-Authors: Mark Merolli, Kathleen Gray, Fernando MartinsanchezAbstract:Research surrounding social media's impact on patient-reported health outcomes continues to emerge. However, an ongoing challenge for researchers is generating valid and reliable Evidence that draws upon rigorous frameworks. This manuscript details the development and refinement of a framework that defines criteria and methods for generating and evaluating Evidence about social media use in chronic disease management; the Therapeutic Affordances of Social Media (TASoMe) framework. TASoMe was built through the considered combination of mixed research methods and data collection instruments. It represents a systematic methodology for conducting research that brings together the key concepts of: therapeutic affordances, patient-reported outcomes, and Evidence-based practice to Generate Evidence about health outcomes from social media use. Its key building blocks include: the key research concepts, research methods, and stakeholders standing to benefit from outcomes. TASoMe contributes to the field of participatory health informatics by offering a stringent and reliable model for advancing research and practice. It has begun to be independently validated across a range of health conditions, and has the potential to be applied to a range of participatory health informatics technologies.
-
developing a framework to Generate Evidence of health outcomes from social media use in chronic disease management
Medicine, 2013Co-Authors: Mark Merolli, Kathleen Gray, Fernando MartinsanchezAbstract:Background: While there is an abundance of Evidence-based practice (EBP) recommendations guiding management of various chronic diseases, Evidence suggesting best practice for using social media to improve health outcomes is inadequate. The variety of social media platforms, multiple potential uses, inconsistent definitions, and paucity of rigorous studies, make it difficult to measure health outcomes reliably in chronic disease management. Most published investigations report on an earlier generation of online tools, which are not as user-centered, participatory, engaging, or collaborative, and thus may work differently for health self-management. Objective: The challenge to establish a sound Evidence base for social media use in chronic disease starts with the need to define criteria and methods to Generate and evaluate Evidence. The authors’ key objective is to develop a framework for research and practice that addresses this challenge. Methods: This paper forms part of a larger research project that presents a conceptual framework of how Evidence of health outcomes can be Generated from social media use, allowing social media to be utilized in chronic disease management more effectively. Using mixed methods incorporating a qualitative literature review, a survey and a pilot intervention, the research closely examines the therapeutic affordances of social media, people with chronic pain (PWCP) as a subset of chronic disease management, valid outcome measurement of patient-reported (health) outcomes (PRO), the individual needs of people living with chronic disease, and finally translation of the combined results to improve Evidence-based decision making about social media use in this context. Results: Extensive review highlights various affordances of social media that may prove valuable to understanding social media’s effect on individual health outcomes. However, without standardized PRO instruments, we are unable to definitively investigate these effects. The proposed framework that we offer outlines how therapeutic affordances of social media coupled with valid and reliable PRO measurement may be used to Generate Evidence of improvements in health outcomes, as well as guide Evidence-based decision making in the future about social media use as part of chronic disease self-management. Conclusions: The results will (1) inform a framework for conducting research into health outcomes from social media use in chronic disease, as well as support translating the findings into Evidence of improved health outcomes, and (2) inform a set of recommendations for Evidence-based decision making about social media use as part of chronic disease self-management. These outcomes will fill a gap in the knowledge and resources available to individuals managing a chronic disease, their clinicians and other researchers in chronic disease and the field of medicine 2.0.
Harry P Selker - One of the best experts on this subject based on the ideXlab platform.
-
efficacy and effectiveness too trials clinical trial designs to Generate Evidence on efficacy and on effectiveness in wide practice
Clinical Pharmacology & Therapeutics, 2019Co-Authors: Harry P Selker, Hansgeorg Eichler, Norman Stockbridge, Newell E Mcelwee, Willard H Dere, Theodora Cohen, John K Erban, Vicki L SeyfertmargolisAbstract:Efficacy trials, designed to gain regulatory marketing approval, evaluate drugs in optimally selected patients under advantageous conditions for relatively short time periods. Effectiveness trials, designed to evaluate use in usual practice, assess treatments among more typical patients in real-world conditions with longer follow-up periods. In "efficacy-to-effectiveness (E2E) trials," if the initial efficacy trial component is positive, the trial seamlessly transitions to an effectiveness trial component to efficiently yield both types of Evidence. Yet more time could be saved by simultaneously addressing efficacy and effectiveness in an "efficacy and effectiveness too (EE2) trial." Additionally, hybrids of the E2E and EE2 approaches with differing degrees of overlap of the two components could allow flexibility for specific drug development needs. In planning EE2 trials, each stakeholder's current and future needs, incentives, and perspective must be considered. Although challenging, the ultimate benefits to stakeholders, the health system, and the public should justify this effort.
Mark Merolli - One of the best experts on this subject based on the ideXlab platform.
-
tasome validating a framework to Generate Evidence about health outcomes from social media use
Medical Informatics Europe, 2018Co-Authors: Mark Merolli, Kathleen Gray, Fernando MartinsanchezAbstract:Research surrounding social media's impact on patient-reported health outcomes continues to emerge. However, an ongoing challenge for researchers is generating valid and reliable Evidence that draws upon rigorous frameworks. This manuscript details the development and refinement of a framework that defines criteria and methods for generating and evaluating Evidence about social media use in chronic disease management; the Therapeutic Affordances of Social Media (TASoMe) framework. TASoMe was built through the considered combination of mixed research methods and data collection instruments. It represents a systematic methodology for conducting research that brings together the key concepts of: therapeutic affordances, patient-reported outcomes, and Evidence-based practice to Generate Evidence about health outcomes from social media use. Its key building blocks include: the key research concepts, research methods, and stakeholders standing to benefit from outcomes. TASoMe contributes to the field of participatory health informatics by offering a stringent and reliable model for advancing research and practice. It has begun to be independently validated across a range of health conditions, and has the potential to be applied to a range of participatory health informatics technologies.
-
developing a framework to Generate Evidence of health outcomes from social media use in chronic disease management
Medicine, 2013Co-Authors: Mark Merolli, Kathleen Gray, Fernando MartinsanchezAbstract:Background: While there is an abundance of Evidence-based practice (EBP) recommendations guiding management of various chronic diseases, Evidence suggesting best practice for using social media to improve health outcomes is inadequate. The variety of social media platforms, multiple potential uses, inconsistent definitions, and paucity of rigorous studies, make it difficult to measure health outcomes reliably in chronic disease management. Most published investigations report on an earlier generation of online tools, which are not as user-centered, participatory, engaging, or collaborative, and thus may work differently for health self-management. Objective: The challenge to establish a sound Evidence base for social media use in chronic disease starts with the need to define criteria and methods to Generate and evaluate Evidence. The authors’ key objective is to develop a framework for research and practice that addresses this challenge. Methods: This paper forms part of a larger research project that presents a conceptual framework of how Evidence of health outcomes can be Generated from social media use, allowing social media to be utilized in chronic disease management more effectively. Using mixed methods incorporating a qualitative literature review, a survey and a pilot intervention, the research closely examines the therapeutic affordances of social media, people with chronic pain (PWCP) as a subset of chronic disease management, valid outcome measurement of patient-reported (health) outcomes (PRO), the individual needs of people living with chronic disease, and finally translation of the combined results to improve Evidence-based decision making about social media use in this context. Results: Extensive review highlights various affordances of social media that may prove valuable to understanding social media’s effect on individual health outcomes. However, without standardized PRO instruments, we are unable to definitively investigate these effects. The proposed framework that we offer outlines how therapeutic affordances of social media coupled with valid and reliable PRO measurement may be used to Generate Evidence of improvements in health outcomes, as well as guide Evidence-based decision making in the future about social media use as part of chronic disease self-management. Conclusions: The results will (1) inform a framework for conducting research into health outcomes from social media use in chronic disease, as well as support translating the findings into Evidence of improved health outcomes, and (2) inform a set of recommendations for Evidence-based decision making about social media use as part of chronic disease self-management. These outcomes will fill a gap in the knowledge and resources available to individuals managing a chronic disease, their clinicians and other researchers in chronic disease and the field of medicine 2.0.
-
developing a framework to Generate Evidence of health outcomes from social media use in chronic disease management
Medicine 2.0 Conference, 2013Co-Authors: Mark MerolliAbstract:Background: Whilst there is an abundance of Evidence-based practice (EBP) recommendations guiding management of various chronic diseases, Evidence suggesting best practice for using social media to improve health outcomes is inadequate. The variety of social media platforms, multiple potential uses, inconsistent definitions and paucity of rigorous studies, make it difficult to measure health outcomes reliably in chronic disease management. Most published investigations report on an earlier generation of online tools, which are not as user-centered, participatory, engaging or collaborative and thus may work differently for health self-management. Objective: The challenge to establish a sound Evidence base for social media use in chronic disease starts with the need to define criteria and methods to Generate and evaluate Evidence. The authors’ key objective is to develop a framework for research and practice that addresses this challenge. This research requires closer examination of the therapeutic affordances of social media, valid outcome measurement of patient reported [health] outcomes, consideration of individual differences/personalization, and finally translation of the combined results to improve Evidence-based interventions using social media in chronic disease management. Methods: This research is targeting chronic pain as a representative subset of chronic disease for study purposes. First, a review of empirical and theoretical literature has been published in order to define potentially therapeutic affordances of social media in chronic disease management. Secondly, a global online survey was conducted, recruiting 231 people with chronic pain (PWCP) from various online health networks, smaller online pain support communities and chronic disease organizations, as well as international pain organizations. The survey's aim is to determine perceptions of the health outcomes experienced from use of social media (specifically considering therapeutic affordances). This will be followed by a pilot intervention to test how such affordances can be applied to tailor online self-management to individual PWCP. Results: Based on thematic analysis of the literature in our published review, various therapeutic affordances of social media appear significant in relation to chronic disease health outcomes. This research has labelled these as identity, flexibility, structure, narration and adaptation. Preliminary survey data to be highlighted at the Med 2.0 conference will offer some empirical Evidence regarding the specific effects on patient reported health outcomes from different therapeutic affordances of social media. Conclusions: The results reported here, when refined in the pilot study will (a) inform a framework for conducting research into health outcomes from social media use in chronic disease, as well as support translating the findings into Evidence of improved health outcomes, and (b) inform a set of recommendations for Evidence-based interventions using social media as part of chronic pain self-management. These outcomes will fill a gap in the knowledge and resources available to PWCP, their clinicians and other researchers in chronic disease and the field of medicine 2.0. []