REVIEW | doi:10.20944/preprints201807.0303.v1
Subject: Social Sciences, Other Keywords: community engagement; health disparities; precision medicine; participant recruitment
Online: 17 July 2018 (10:21:34 CEST)
In response to the National Institutes of Health (NIH) All of Us Medicine Research Initiative, the Precision Medicine Research (PreMeR) Diversity Consortium was formed by four institutions from the Research Centers in Minority Institutions (RCMI) Translational Research Network (RTRN). This synergistic approach proposed evidence-based, best practices used by experienced researchers to engage, recruit and retain diverse populations in the All of Us initiative. Conceptualization of the proposed approach was aided by social influence theories to better understand how people’s beliefs and opinions should be modified to affect change leading to action . The Social-Ecological Model (SEM), for Health Promotion , from Stokols  and Community-Based Participatory (CBPR) Models, guided proposed engagement, recruitment, and retention strategies contextualized with the individual, interpersonal, organizational, community, and policy spheres of influence. The PreMeR produced a partnership to evaluate and improve the effectiveness of current engagement, recruitment, and retention strategies for minority participation in scientific studies. This approach illustrates the need to incorporate multiple methods of engagement to reach a diverse audience to participate in scientific research. Engagement, recruitment, and retention strategies in community and biomedical research must be viewed as community engaged public health interventions, utilizing the same theoretical principles and approaches.
ARTICLE | doi:10.20944/preprints202109.0518.v1
Subject: Earth Sciences, Environmental Sciences Keywords: data fusion; multi-sensor; data visualization; data treatment; participant reports; air quality; exposure assessment
Online: 30 September 2021 (14:13:52 CEST)
Use of a multi-sensor approach can provide citizens a holistic insight in the air quality in their immediate surroundings and assessment of personal exposure to urban stressors. Our work, as part of the ICARUS H2020 project, which included over 600 participants from 7 European cities, discusses data fusion and harmonization on a diverse set of multi-sensor data streams to provide a comprehensive and understandable report for participants, and offers possible solutions and improvements. Harmonizing the data streams identified issues with the used devices and protocols, such as non-uniform timestamps, data gaps, difficult data retrieval from commercial devices, and coarse activity data logging. Our process of data fusion and harmonization allowed us to automate the process of generating visualizations and reports and consequently provide each participant with a detailed individualized report. Results showed that a key solution was to streamline the code and speed up the process, which necessitated certain compromises in visualizing the data. A thought-out process of data fusion and harmonization on a diverse set of multi-sensor data streams considerably improved the quality and quantity of data that a research participant receives. Though automatization accelerated the production of the reports considerably, manual structured double checks are strongly recommended.
Subject: Keywords: brain injuries; traumatic brain injury; children; diversity; student-led; participant-focused; recruitment; sample; methods
Online: 7 July 2020 (04:42:39 CEST)
The advancement of the pediatric traumatic brain injury (TBI) knowledge base requires biospecimens and data from large samples. This study seeks to describe a novel clinical research modality to establish best practices for enrolling a diverse pediatric TBI population and quantifying key information on enrollment into biobanks. Screening form responses were standardized and cleaned through Google Sheets. Data was used to analyze total individuals at each enrollment stage. R was utilized for final analysis, including chi-square goodness of fit and proportion statistical tests, to determine further significance and relationships. Issues throughout data cleaning shed light on limitations of the consent modality. Results suggest that through a diverse research team, the recruited sample exceeds traditional measures of representation (e.g. sex, race, ethnicity). Sex demographics of the study are representative of the local population. Screening for candidates is critical to the success of the consent modality. The consent modality may be modified to increase diversity of study population and accept bilingual candidates. Researchers must implement best practices, including increasing inclusivity of bilingual populations, utilizing technology, and improving participant follow-up, to improve health disparities for understudied clinical populations.
ARTICLE | doi:10.20944/preprints201905.0115.v1
Subject: Engineering, Other Keywords: family farming; agroecology; rural settlements; circle of sustainability; agricultural ecology; Paulo Freire; participant research; land reform; generating themes
Online: 9 May 2019 (13:05:59 CEST)
In the Brazilian Amazon, rural settlements are increasingly isolated by large-scale production farms, jeopardizing their sustainability and the good living of family farmers. Works were carried out in settlements to measure sustainability. However, the majority does not consider the participation and the collectively of those involved. In this way, we propose to evaluate, in a collective and participatory way, the sustainability and good living of the SDP São Paulo Rural Settlement, of the northern Amazon of Mato Grosso. We used the didactic-pedagogical method Circle of Sustainability, developed from five points: 1st - circle of investigation of generating themes; 2nd - circle of the history of the subject world; 3rd - circle of diagnosis of rural settlements; 4th - circle of exchange of knowledge; and 5th - circle of sustainable perceptions and narratives. The historical, socioeconomic and cultural characterization of the settlement allowed us to understand how sustainability and good living are being built in the settlement history process. Sustainability and good living are dialectical processes, are under construction, in movement.
ARTICLE | doi:10.20944/preprints201806.0078.v1
Subject: Medicine & Pharmacology, General Medical Research Keywords: health data science; clinical trials; research participant reporting; personal health data diary; personal private webserver; research data integrity
Online: 6 June 2018 (09:40:35 CEST)
We describe how clinical researchers can exploit the Android cell phone as an economic platform for the gathering of data from clinical trial participants. The aim was to provide a solution with the shortest possible learning curve for researchers who are comfortable with setting up web pages. The additional requirement is that they extend their skills to the installation of a local webserver on the cell phone and then use four simple PHP templates to construct the clinical research data collection and processing forms. Data so collected is automatically written to local csv files on the cell phone. These csv phones can be retrieved from the device by the researcher simply by plugging the cell phone into their desktop PC and accessing the cell phone memory in just the same way as they would a USB memory stick. The results are presented as a list of recommended Android Apps along with settings that have proved to provide a stable combination likely to be easily used by clinical research participants. We have made a limited ‘user trial’ of this approach with satisfactory feedback received. We have concluded that this approach will reward researchers with a solution that is user friendly, will provide transcription free data and that is more than cost competitive with the conventional error prone/poor compliance ‘paper based participant form – researcher transcription’ cycle.