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The AutGO Initiative: A Conceptual Framework for Developing Genetics-Outcomes Research Hypotheses.

ABSTRACT: The increasing emphasis on translational approaches to complex neuropsychiatric and neurodevelopmental conditions research requires scientists from a broad range of disciplines to build dynamic collaborations when formulating hypotheses and framing study designs. The need to integrate the knowledge and perspectives not only from multiple scientific silos but also from the populations impacted by these conditions presents a significant challenge to researchers, particularly for a heterogeneous condition like autism. As one path toward addressing these challenges, we have previously introduced Autism Genetics Outcomes (AutGO), an initiative to support broad stakeholder partnerships and promote a new integrated concept called GO (i.e., research approaches that draw on both genetics and clinical outcomes perspectives). Herein, we developed a workflow for collecting stakeholders' feedback toward the development of a GO hypothesis. AutGO is an evolving initiative, and here we describe how its three essential components (conceptual framework, applicability, and implementation) have been developed. As a proof-of-concept, the AutGO team sought to demonstrate how a GO hypothesis could be developed using a semi-structured literature review workflow. We also developed a prototype from published reports and formulated a GO hypothesis for autism. Rather than seeking community stakeholder input after a research project is conceptualized and designed, the developed conceptual framework demonstrates the feasibility of formulating scientific hypotheses by engaging stakeholders in retrospective semi-structured literature reviews. The presented workflow, prototype, and discussed recommendations will bring awareness in the autism research community about the benefits of applying the GO approach in order to promote translational aspects in genetics research. LAY SUMMARY: We used a community-based engagement approach to develop AutGO (Autism Genetics Outcomes), an initiative to establish stakeholder partnerships and to promote research approaches (we refer to as GO) that draw on both genetics and clinical outcomes perspectives. Specifically, we developed a conceptual framework that includes a literature review process for developing GO hypotheses and stakeholder feedback collection protocol. Our work will bring awareness in the autism research community about the benefits of integrating patient perspectives in genetics research. Autism Res 2020, 13: 1286-1299. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.

SUBMITTER: Talebizadeh Z

PROVIDER: S-EPMC7496490 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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The AutGO Initiative: A Conceptual Framework for Developing Genetics-Outcomes Research Hypotheses.

Talebizadeh Zohreh Z Shah Ayten A

Autism research : official journal of the International Society for Autism Research 20200703 8

The increasing emphasis on translational approaches to complex neuropsychiatric and neurodevelopmental conditions research requires scientists from a broad range of disciplines to build dynamic collaborations when formulating hypotheses and framing study designs. The need to integrate the knowledge and perspectives not only from multiple scientific silos but also from the populations impacted by these conditions presents a significant challenge to researchers, particularly for a heterogeneous co ...[more]

PMID: 32618145

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Project description:BACKGROUND:Prognostic research has many important purposes, including (i) describing the natural history and clinical course of health conditions, (ii) investigating variables associated with health outcomes of interest, (iii) estimating an individual's probability of developing different outcomes, (iv) investigating the clinical application of prediction models, and (v) investigating determinants of recovery that can inform the development of interventions to improve patient outcomes. But much prognostic research has been poorly conducted and interpreted, indicating that a number of conceptual areas are often misunderstood. Recent initiatives to improve this include the Prognosis Research Strategy (PROGRESS) and the Transparent Reporting of a multivariable prediction model for Individual Prognosis or Diagnosis (TRIPOD) Statement. In this paper, we aim to show how different categories of prognostic research relate to each other, to differentiate exploratory and confirmatory studies, discuss moderators and mediators, and to show how important it is to understand study designs and the differences between prediction and causation. MAIN TEXT:We propose that there are four main objectives of prognostic studies - description, association, prediction and causation. By causation, we mean the effect of prediction and decision rules on outcomes as determined by intervention studies and the investigation of whether a prognostic factor is a determinant of outcome (on the causal pathway). These either fall under the umbrella of exploratory (description, association, and prediction model development) or confirmatory (prediction model external validation and investigation of causation). Including considerations of causation within a prognostic framework provides a more comprehensive roadmap of how different types of studies conceptually relate to each other, and better clarity about appropriate model performance measures and the inferences that can be drawn from different types of prognostic studies. We also propose definitions of 'candidate prognostic factors', 'prognostic factors', 'prognostic determinants (causal)' and 'prognostic markers (non-causal)'. Furthermore, we address common conceptual misunderstandings related to study design, analysis, and interpretation of multivariable models from the perspectives of association, prediction and causation. CONCLUSION:This paper uses a framework to clarify some concepts in prognostic research that remain poorly understood and implemented, to stimulate discussion about how prognostic studies can be strengthened and appropriately interpreted.

Project description:The increasing focus of healthcare systems worldwide on long-term care highlights the need for culturally sensitive Health-Related Quality of Life instruments to accurately capture perceived health of various populations. Such instruments require a contextualized conceptual framework of health domains, which is lacking in some socio-cultural contexts. We developed a comprehensive and culturally sensitive conceptual framework of health domains relevant to the Singaporean population. We recruited Singaporeans/ permanent residents, English/ Chinese-speaking, with/ without chronic illnesses to participate in focus group discussions (FGDs) and in-depth interviews (IDIs). We elicited health areas participants perceived to be important for them to be happy and satisfied with life. To encourage spontaneous emergence of themes, we did not specify any aspect beyond the broad domains of Physical, Mental, and Social health so as not to limit the emergence of new themes. Themes from the transcripts were distilled through open coding (two independent coders), then classified into more abstract domains (each transcript coded independently by two coders from a pool of six coders). From October 2013 to August 2014, 121 members of the general public participated in 18 FGDs and 13 IDIs (44.6% males, mean age: 53.3 years 77% Chinese, 9% Malay, 12% Indian, 63% with chronic illness) while 13 healthcare workers participated as patient-proxies in three FGDs. Thematic analysis identified 27 domains. The 15 physical domains included physical appearance, energy, physical fitness, and health and resistance to illness. The nine mental domains included emotions, self-esteem, and personal freedom. The three social domains were social contact, social relationships, and social roles. This conceptual framework reflected physical, mental, and social dimensions of well-being, suggesting that the Singapore population's views on health support the World Health Organization's definition of health as "a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity".

Project description:BackgroundPopulation aging is usually associated with increased health care needs. Developing an age-friendly health system with special features, structure, and functions to meet the special needs of older people and improving their health status and quality of life is essential. This study aimed to develop a conceptual framework for an age-friendly health system, which would offer a conceptual basis for providing the best possible care for older people in health system to let them experience a successful, healthy, and active aging.MethodsA scoping review was used to design the conceptual framework based on Arksey and O'Malley's model, including six stages, with the final stage of using expert's opinions to improve and validate the initial framework. The health system model of Van Olmen, was selected as the baseline model for this framework. Then, by reviewing the available evidence, the characteristics of an age-friendly health system were extracted and incorporated in the baseline mode.ResultsUsing the electronic searching, initially 12 316 documents were identified, of which 140 studies were selected and included in this review study. The relevant data were extracted from the 140 studies by two reviewers independently. Most studies were conducted in 2016-2020, and mostly were from United States (33.6%). To have an age-friendly health system, interventions and changes should be performed in functions, components and objectives of health systems. This system aims to provide evidence-based care through trained workforces and involves older people and their families in health policy-makings. Its consequences include better health acre for older people, with fewer healthcare-related harms, greater care satisfaction and increased use of cost-effective health services.ConclusionTo meet the needs of older people, health systems should make interventions in their functions for better performance. In line with these changes, other parts of society should work in harmony and set the health of older people as a top priority to ensure they can have a successful aging.

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The AutGO Initiative: A Conceptual Framework for Developing Genetics-Outcomes Research Hypotheses.

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The AutGO Initiative: A Conceptual Framework for Developing Genetics-Outcomes Research Hypotheses.

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