Linking pattern to process across spatial and temporal scales has been a key goal of the field of biogeography. In January 2017, the 8th biennial conference of the International Biogeography Society sponsored a symposium on
Measuring Health-Related Quality of Life With Multimodal Data: Viewpoint
The ability to objectively measure aspects of performance and behavior is a fundamental pillar of digital health, enabling digital wellness products, decentralized trial concepts, evidence generation, digital therapeutics, and more. Emerging multimodal technologies capable of measuring several modalities simultaneously and efforts to integrate inputs across several sources are further expanding the limits of what digital measures can assess. Experts from the field of digital health were convened as part of a multi-stakeholder workshop to examine the progress of multimodal digital measures in two key areas: detection of disease and the measurement of meaningful aspects of health relevant to the quality of life. Here we present a meeting report, summarizing key discussion points, relevant literature, and finally a vision for the immediate future, including how multimodal measures can provide value to stakeholders across drug development and care delivery, as well as three key areas where headway will need to be made if we are to continue to build on the encouraging progress so far: collaboration and data sharing, removal of barriers to data integration, and alignment around robust modular evaluation of new measurement capabilities.
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- NSF-PAR ID:
- 10401372
- Date Published:
- Journal Name:
- Journal of Medical Internet Research
- Volume:
- 24
- Issue:
- 5
- ISSN:
- 1438-8871
- Page Range / eLocation ID:
- e35951
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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Abstract Building up biogeography—process to pattern that aimed to review progress towards this goal. Here we present a summary of the symposium, in which we identified promising areas of current research and suggested future research directions. We focus on (1) emerging types of data such as behavioural observations and ancientDNA , (2) how to better incorporate historical data (such as fossils) to move beyond what we term “footprint measures” of past dynamics and (3) the role that novel modelling approaches (e.g. maximum entropy theory of ecology and approximate Bayesian computation) and conceptual frameworks can play in the unification of disciplines. We suggest that the gaps separating pattern and process are shrinking, and that we can better bridge these aspects by considering the dimensions of space and time simultaneously. -
International collaboration between collections, aggregators, and researchers within the biodiversity community and beyond is becoming increasingly important in our efforts to support biodiversity, conservation and the life of the planet. The social, technical, logistical and financial aspects of an equitable biodiversity data landscape – from workforce training and mobilization of linked specimen data, to data integration, use and publication – must be considered globally and within the context of a growing biodiversity crisis. In recent years, several initiatives have outlined paths forward that describe how digital versions of natural history specimens can be extended and linked with associated data. In the United States, Webster (2017) presented the “extended specimen”, which was expanded upon by Lendemer et al. (2019) through the work of the Biodiversity Collections Network (BCoN). At the same time, a “digital specimen” concept was developed by DiSSCo in Europe (Hardisty 2020). Both the extended and digital specimen concepts depict a digital proxy of an analog natural history specimen, whose digital nature provides greater capabilities such as being machine-processable, linkages with associated data, globally accessible information-rich biodiversity data, improved tracking, attribution and annotation, additional opportunities for data use and cross-disciplinary collaborations forming the basis for FAIR (Findable, Accessible, Interoperable, Reproducible) and equitable sharing of benefits worldwide, and innumerable other advantages, with slight variation in how an extended or digital specimen model would be executed. Recognizing the need to align the two closely-related concepts, and to provide a place for open discussion around various topics of the Digital Extended Specimen (DES; the current working name for the joined concepts), we initiated a virtual consultation on the discourse platform hosted by the Alliance for Biodiversity Knowledge through GBIF. This platform provided a forum for threaded discussions around topics related and relevant to the DES. The goals of the consultation align with the goals of the Alliance for Biodiversity Knowledge: expand participation in the process, build support for further collaboration, identify use cases, identify significant challenges and obstacles, and develop a comprehensive roadmap towards achieving the vision for a global specification for data integration. In early 2021, Phase 1 launched with five topics: Making FAIR data for specimens accessible; Extending, enriching and integrating data; Annotating specimens and other data; Data attribution; and Analyzing/mining specimen data for novel applications. This round of full discussion was productive and engaged dozens of contributors, with hundreds of posts and thousands of views. During Phase 1, several deeper, more technical, or additional topics of relevance were identified and formed the foundation for Phase 2 which began in May 2021 with the following topics: Robust access points and data infrastructure alignment; Persistent identifier (PID) scheme(s); Meeting legal/regulatory, ethical and sensitive data obligations; Workforce capacity development and inclusivity; Transactional mechanisms and provenance; and Partnerships to collaborate more effectively. In Phase 2 fruitful progress was made towards solutions to some of these complex functional and technical long-term goals. Simultaneously, our commitment to open participation was reinforced, through increased efforts to involve new voices from allied and complementary fields. Among a wealth of ideas expressed, the community highlighted the need for unambiguous persistent identifiers and a dedicated agent to assign them, support for a fully linked system that includes robust publishing mechanisms, strong support for social structures that build trustworthiness of the system, appropriate attribution of legacy and new work, a system that is inclusive, removed from colonial practices, and supportive of creative use of biodiversity data, building a truly global data infrastructure, balancing open access with legal obligations and ethical responsibilities, and the partnerships necessary for success. These two consultation periods, and the myriad activities surrounding the online discussion, produced a wide variety of perspectives, strategies, and approaches to converging the digital and extended specimen concepts, and progressing plans for the DES -- steps necessary to improve access to research-ready data to advance our understanding of the diversity and distribution of life. Discussions continue and we hope to include your contributions to the DES in future implementation plans.more » « less
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In January and April 2021 we held the Workshop on Overcoming Measurement Barriers to Internet Research (WOMBIR) with the goal of understanding challenges in network and security data set collection and sharing. Most workshop attendees provided white papers describing their perspectives, and many participated in short-talks and discussion in two virtual workshops over five days. That discussion produced consensus around several points. First, many aspects of the Internet are characterized by decreasing visibility of important network properties, which is in tension with the Internet's role as critical infrastructure. We discussed three specific research areas that illustrate this tension: security, Internet access; and mobile networking. We discussed visibility challenges at all layers of the networking stack, and the challenge of gathering data and validating inferences. Important data sets require longitudinal (long-term, ongoing) data collection and sharing, support for which is more challenging for Internet research than other fields. We discussed why a combination of technical and policy methods are necessary to safeguard privacy when using or sharing measurement data. Workshop participant proposed several opportunities to accelerate progress, some of which require coordination across government, industry, and academia.more » « less
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New modes of technology are offering unprecedented opportunities to unobtrusively collect data about people's behavior. While there are many use cases for such information, we explore its utility for predicting multiple clinical assessment scores. Because clinical assessments are typically used as screening tools for impairment and disease, such as mild cognitive impairment (MCI), automatically mapping behavioral data to assessment scores can help detect changes in health and behavior across time. In this article, we aim to extract behavior markers from two modalities, a smart home environment and a custom digital memory notebook app, for mapping to 10 clinical assessments that are relevant for monitoring MCI onset and changes in cognitive health. Smart-home-based behavior markers reflect hourly, daily, and weekly activity patterns, while app-based behavior markers reflect app usage and writing content/style derived from free-form journal entries. We describe machine learning techniques for fusing these multimodal behavior markers and utilizing joint prediction. We evaluate our approach using three regression algorithms and data from 14 participants with MCI living in a smart-home environment. We observed moderate to large correlations between predicted and ground-truth assessment scores, ranging from r = 0.601 to r = 0.871 for each clinical assessment.more » « less
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Objective Progress towards equitable and sufficient water has primarily been measured by population-level data on water availability. However, higher-resolution measures of water accessibility, adequacy, reliability and safety (ie, water insecurity) are needed to understand how problems with water impact health and well-being. Therefore, we developed the Household Water InSecurity Experiences (HWISE) Scale to measure household water insecurity in an equivalent way across disparate cultural and ecological settings. Methods Cross-sectional surveys were implemented in 8127 households across 28 sites in 23 low-income and middle-income countries. Data collected included 34 items on water insecurity in the prior month; socio-demographics; water acquisition, use and storage; household food insecurity and perceived stress. We retained water insecurity items that were salient and applicable across all sites. We used classical test and item response theories to assess dimensionality, reliability and equivalence. Construct validity was assessed for both individual and pooled sites using random coefficient models. Findings Twelve items about experiences of household water insecurity were retained. Items showed unidimensionality in factor analyses and were reliable (Cronbach’s alpha 0.84 to 0.93). The average non-invariance rate was 0.03% (threshold <25%), indicating equivalence of measurement and meaning across sites. Predictive, convergent and discriminant validity were also established. Conclusions The HWISE Scale measures universal experiences of household water insecurity across low-income and middle-income countries. Its development ushers in the ability to quantify the prevalence, causes and consequences of household water insecurity, and can contribute an evidence base for clinical, public health and policy recommendations regarding water.more » « less
- Free Publicly Accessible Full Text
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Accepted Manuscript1.0
- Journal Article:
- https://doi.org/10.2196/35951
