Lessons Learned Recruiting and Retaining Pregnant and Postpartum Individuals in Digital Trials (Preprint)

2021 ◽  
Author(s):  
Amanda M Parks ◽  
Jennifer Duffecy ◽  
Jennifer E McCabe ◽  
Rachel Blankstein Breman ◽  
Jeannette Milgrom ◽  
...  

UNSTRUCTURED In an increasingly connected world and in the midst of a global pandemic, digital trials offer numerous advantages over traditional trials that rely on physical study sites. Digital trials have the potential to improve access to research and clinical treatments for the most vulnerable and minoritized, including pregnant and postpartum individuals. However, digital trials are underutilized in maternal and child health research, and there is limited evidence to inform the design and conduct of digital trials. Our research collaborative, consisting of five research teams in the U.S. and Australia, aimed to address this gap. We collaborated to share lessons learned from our experiences recruiting and retaining pregnant and postpartum individuals in digital trials of social and behavioral interventions. We first discuss the promise of digital trials in improving participation in research during the perinatal period as well as the unique challenges they pose. Second, we present lessons learned from 12 completed and ongoing digital trials that have used platforms such as Ovia, Facebook, and Instagram to recruitment. Our trials have evaluated interventions for breastfeeding, prenatal and postpartum depression, insomnia, decision-making, and chronic pain. We focus on challenges and lessons learned in three key areas 1) rapid recruitment of large samples with a diversity of minoritized identities; 2) retention of study participants in longitudinal studies; and 3) preventing fraudulent enrollment. We offer concrete strategies that we have pilot tested to address these challenges. Strategies presented in this commentary can be incorporated into as well as formally evaluated in future studies.

2021 ◽  
Vol 20 ◽  
pp. 160940692110167
Author(s):  
Snæfrídur Thóra Egilson ◽  
Linda B. Ólafsdóttir ◽  
Anna Sigrún Ingimarsdóttir ◽  
Freyja Haraldsdóttir ◽  
Ásta Jóhannsdóttir ◽  
...  

The LIFE-DCY research project has two aims. First, to evaluate disabled children’s quality of life (QoL) as reported by themselves and their parents, and second, to locate commonalities, differences, and conflicting issues in the processes that may influence disabled children’s life quality and participation. This paper describes the study design, methodology, and methods along with lessons learned. In addition various methodological and ethical concerns are raised. A sequential mixed-methods design was applied. In Phase one (mapping) we used KIDSCREEN-27 to study how disabled children evaluate their QoL compared with the perspectives of their parents and those of non-disabled children and their parents. Using the Participation and environment measure we also studied parents’ perspectives of their children’s participation in different social contexts. Altogether 209 disabled children and their parents, and 335 children in a control group and their parents (paired reports) participated in phase one. Phase two (unpacking) consisted of 14 case studies with disabled children aged 8–18 years and focus groups with 21 disabled people aged 19–35 years. The initial analysis was inductive and data-oriented. We then used critical and transformative lenses to shed light on how meaning was made of life quality and participation in relation to the context in which study participants found themselves. The LIFE-DCY research promotes an understanding of how important aspects of life quality and participation may intersect within different contexts and at different times. The theoretical understandings from this study may also help unpack various aspects of childhood disability in terms of knowledge and power and enhance understandings of how ideas about normality and childhood disability are constructed.


2021 ◽  
Author(s):  
Pavel Piler ◽  
Vojtěch Thon ◽  
Lenka Andrýsková ◽  
Kamil Doležel ◽  
David Kostka ◽  
...  

AbstractBackgroundAlthough the Czech Republic weathered the first wave of the COVID-19 epidemic with relatively low incidence, the second wave of the global pandemic saw it rank among countries bearing the greatest COVID-19 burden, both in Europe and on a worldwide scale. The aim of the nationwide prospective seroconversion (PROSECO) study was to investigate the dynamics of seroconversion of anti-SARS-CoV-2 IgG antibodies in the Czech population.MethodsAll clients of the second largest health insurance company in the Czech Republic were sent a written invitation to participate in this longitudinal study. The study includes the first 30,054 persons who provided a blood sample between October 2020 and March 2021. Seroprevalence was compared between calendar periods of blood sample collection, RT-PCR test results, sociodemographic factors, and other characteristics.FindingsThe data show a dramatic increase in seropositivity over time, from 28% in October/November 2020 to 43% in December 2020/January 2021 to 51% in February/March 2021. These trends were consistent with government data on cumulative viral antigenic prevalence in the population captured by PCR testing – although the seroprevalence rates established in this study were considerably higher than those listed in government data. Data pooled across the entire study period exhibited minor differences in seropositivity between sexes, age groups and body mass index categories; results were similar between test providing laboratories. Seropositivity was substantially higher among symptomatic vs. asymptomatic persons (76% vs. 34%). At least one third of all seropositive participants were asymptomatic, and 28% participants who developed antibodies against SARS-CoV-2 never underwent PCR testing.InterpretationAntibody response provides a better marker of past SARS-CoV-2 infection than PCR testing data. Our data on seroconversion confirm the rapidly increasing prevalence in the Czech population during the dramatically rising pandemic wave prior to the beginning of massive vaccination. The planned second and third assessment of the study participants (April 2021 – September 2021, October 2021 – March 2022) will provide valuable evidence on the seroprevalence changes following vaccination and persistence of antibodies resulting from natural infection and vaccination.Research in contextEvidence before this studySimilarly to most European countries, the first COVID-19 epidemic wave in the Czech Republic produced a relatively low incidence (86.9 confirmed cases per 100,000 persons over three months). At the peaks of the second wave, however, over 100 confirmed cases per 100,000 persons were diagnosed daily and the Czech Republic ranked among the countries with the greatest burden of COVID-19 in Europe and in the world. Only a few nationwide population-based studies have been published covering the second wave of the epidemic in Europe, and none of them from the Central and Eastern European region.Added value of this studyThe PROSECO study will provide key data from the heavily affected Central European region and contribute to the epidemiological and serological characteristics of the SARS-CoV-2 infection. All 30,054 study participants were recruited between October 2020 and March 2021, thus covering all three epidemic peaks (November 2020, January and March 2021) of the second COVID-19 epidemic wave. This allows us to follow the dynamics of seroconversion of anti-SARS-CoV-2 IgG antibodies in the immunologically naive and unvaccinated population during the COVID-19 pandemic. The study participants will be re-assessed in the second (April 2021 – September 2021) and third (October 2021 – March 2022) PROSECO phases to further study the post-infection/post-vaccination dynamics of seroconversion in/after a period of massive vaccination.Implications of all the available evidenceData from the first phase of the PROSECO study indicate that the percentage of the population that has been exposed to the SARS-CoV-2 may be substantially higher than estimates based on official data on cumulative viral positivity incidence as at least one third of seropositive participants were asymptomatic, and 28% of participants who developed antibodies against SARS-CoV-2 never underwent PCR testing. Regional seroprevalence data provide key information to inform, in combination with other surveillance data, public health policies and will be instrumental for the successful management of the subsequent phases of the global pandemic.The number of seropositive participants who never underwent RT-PCR testing demonstrates the importance of serological population-based studies describing the spread and exposure to the virus in the population over time.


2018 ◽  
Vol 48 (3) ◽  
pp. 417-434 ◽  
Author(s):  
Davide Malmusi ◽  
Carles Muntaner ◽  
Carme Borrell ◽  
Marc Suhrcke ◽  
Patricia O’Campo ◽  
...  

Since 2011, the SOPHIE project has accumulated evidence regarding the influence of social and economic policies on population health levels, as well as on health inequalities according to socioeconomic position, gender, and immigrant status. Through comparative analyses and evaluation case studies across Europe, SOPHIE has shown how these health inequalities vary according to contexts in macroeconomics, social protection, labor market, built environment, housing, gender equity, and immigrant integration and may be reduced by equity-oriented policies in these fields. These studies can help public health and social justice advocates to build a strong case for fairer social and economic policies that will lead to the reduction of health inequalities that most governments have included among their policy goals. In this article, we summarize the main findings and policy implications of the SOPHIE project and the lessons learned on civil society participation in research and results communication.


Systems ◽  
2020 ◽  
Vol 8 (2) ◽  
pp. 18 ◽  
Author(s):  
EunSu Lee ◽  
Yi-Yu Chen ◽  
Melanie McDonald ◽  
Erin O’Neill

Korea initiated a new experiment, called a dynamic response system for open democratic societies as a principle to respond to the novel coronavirus (COVID-19). The global pandemic of COVID-19 led to a surge in demand for healthcare medical masks and respirators, and strained the global supply chain of mask production and distribution systems. This study provides a systemic view of critical personal protective equipment for both healthcare staff and the public to stop the spread of COVID-19. This study investigates the dynamic response system of healthcare mask production to the coronavirus and discusses lessons learned in view of systems thinking. The study shows that it is critical to developing a quick and dynamic response system to the evolving market conditions with flexible and agile operations. Visibility with transparency with information sharing with the public is also critical under global pandemic. Due to the shortage of mask supply, smart consumption is required along with collaboration with public and private sectors, as well as global organizations. Democratic leadership and a well-prepared strategic plan for long-term period are essential to the open society to prepare the global pandemic in the future. This study serves as a benchmark for dynamic and timely responses to the global pandemic.


2020 ◽  
Vol 17 (S1) ◽  
Author(s):  
Meriel Flint-O’Kane ◽  
◽  
Peter von Dadelszen ◽  
Prestige Tatenda Makanga ◽  
Esperança Sevene ◽  
...  

2019 ◽  
Vol 24 (1) ◽  
pp. 22-29
Author(s):  
Michael Welton ◽  
Carmen M. Vélez Vega ◽  
Colleen B. Murphy ◽  
Zaira Rosario ◽  
Hector Torres ◽  
...  

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