In-person Research Research Articles

Community-Driven Research with People Who Use Drugs: A Virtual Project During Multiple Epidemics

Sociological approaches to digital and community-engaged research experienced significant innovation in recent years. This article examines developing and implementing a primarily virtual community-driven research (CDR) project with the National Survivors Union, the American national drug-users union, during the COVID-19 pandemic. Relationships between researchers and directly impacted people, such as people who use drugs, face many barriers. These issues were exacerbated during COVID-19 when in-person research decreased while drug-related harms increased. In response, this project modified the CDR model for drug-use research. The CDR model is particularly beneficial for studies with marginalized populations who may mistrust researchers. In CDR, impacted community members are fundamental project drivers. This project’s data are based on 29 months of weekly group meetings in National Survivors Union online spaces, group and individual text conversations, phone calls, and shared-document group work. The project co-developed methods for CDR with directly impacted people, including community-initiated research questions, low-threshold methods, collaborative writing strategies, coauthorship practices foregrounding directly impacted perspectives, and multiple dissemination forms. Modified CDR expands sociological methods for digital research, citizen science, and community-engaged research with vulnerable, criminalized groups. This approach may aid inclusive, innovative sociological scholarship and effective public health policy for reducing morbidity and mortality during multiple crises.

Navigating ethical challenges in online wildlife trade research.

The surge in internet accessibility has transformed wildlife trade by facilitating the acquisition of wildlife through online platforms. This scenario presents unique ethical challenges for researchers, as traditional ethical frameworks for in-person research cannot be readily applied to the online realm. Currently, there is a lack of clearly defined guidelines for appropriate ethical procedures when conducting online wildlife trade (OWT) research. In response to this, we consulted the scientific literature on ethical considerations in online research and examined existing guidelines established by professional societies and ethical boards. Based on these documents, we present a set of recommendations that can inform the development of ethically responsible OWT research. Key ethical challenges in designing and executing OWT research include the violation of privacy rights, defining subjects and illegality, and the risk of misinterpretation or posing risks to participants when sharing data. Potential solutions include considering participants' expectations of privacy, defining when participants are authors versus subjects, understanding the legal and cultural context, minimizing data collection, ensuring anonymization, and removing metadata. Best practices also involve being culturally sensitive when analyzing and reporting findings. Adhering to these guidelines can help mitigate potential pitfalls and provides valuable insights to editors, researchers, and ethical review boards, enabling them to conduct scientifically rigorous and ethically responsible OWT research to advance this growing field.

Academia's Role in Climate Action: Enhancing Awareness and Reducing Environmental Impact of Academic Events

A clean environment is vital for both population health and the well-being of our planet (Brusseau et al., 2019). In-person gatherings, like academic conferences, significantly contribute to carbon emissions that harm the environment, highlighting the importance of finding opportunities to reduce these emissions (Tao et al., 2021). Cognizant of the environmental cost of our annual national in-person research team gathering, our team sought to minimize the environmental impact of our 2023 gathering while raising awareness among team members. Our actions included using reusable tableware, composting food waste, and hosting an education session by the local environment office. Not only did our efforts increase awareness among gathering attendees about the importance of considering environmental impact reduction opportunities in their work, but they also catalyzed similar efforts at two national conferences. Our team took the lead in developing an evaluation of the environmental impact of each national conference and surveyed over 150 conference attendees. We collected demographic information, travel mode to the conference, and attitudes about environmental harms via a digital conference application. We also observed environmental actions implemented by event organizers and venue hosts. A carbon emission score and frequency distributions of attitudes surrounding the environment were calculated. Where possible, a food waste assessment was conducted. Findings showed that event organizers made efforts to minimize the environmental impact of their event by selecting a venue whose management was interested in collaborating; by encouraging attendees to carpool and use reusable water bottles; by serving plant-based meals, and by minimizing single-use products. Findings also revealed that most conference attendees consider it important to reduce the environmental impact of their professional lives. Given the value of face-to-face interaction in facilitating knowledge exchange (Chan et al., 2023), it is important that organizers continue to make efforts to reduce carbon emissions when planning events.

E-Cigarette Nicotine Delivery Among Young Adults by Nicotine Form, Concentration, and Flavor

Concerns have been raised about the abuse liability of modern e-cigarettes that use acidic additives to form nicotine salts, making the inhalation of nicotine smoother than freebase nicotine. To examine the effects of nicotine form and concentration and e-liquid flavor on subjective effects ratings, vaping behavior, and nicotine uptake among young adults who use e-cigarettes. In this single-blind, within-participant, crossover randomized clinical trial, a convenience sample of young adults aged 21 to 25 years who currently used e-cigarettes was recruited from December 2021 to August 2023, for in-person research laboratory visits in Columbus, Ohio. Participants completed up to 9 vaping sessions, starting with their usual e-cigarette brand in the first session followed by 1 of 8 laboratory-prepared e-liquids in a randomly assigned order in each subsequent session. Prepared e-liquids varied by nicotine form (salt-based vs freebase), nicotine concentration (5% vs 1% weight per weight), and flavor (menthol vs tobacco). Each session included a 5-minute, 10-puff standardized vaping period followed by 30 minutes of ad libitum vaping. At 4 time points (0, 5, 10, and 35 minutes) during each vaping session, plasma samples were collected for assessing nicotine uptake, and self-reports of urges, craving, and withdrawal were collected via questionnaires. Positive subjective effects were self-reported after 35 minutes of vaping using a visual analog scale; urges and cravings were reported using the Questionnaire of Smoking Urges (QSU). Puff topography data were collected throughout each vaping session. Seventy-two participants (mean [SD] age, 22.4 [1.4] years; 42 [58.3%] female) who sampled at least 1 laboratory-prepared e-liquid composed the analytic sample. Salt-based (vs freebase) nicotine e-liquids increased nicotine intake, with 5% salt-based e-liquids delivering the highest mean plasma levels of nicotine (11.2 ng/mL [95% CI, 9.3-13.2 ng/mL] at 5 minutes; 17.2 ng/mL [95% CI, 14.3-20.1 ng/mL] at 35 minutes) irrespective of flavors. Higher positive subjective effect ratings (eg, for liking) were received by salt-based (42.8; 95% CI, 39.4-46.1) vs freebase (32.0; 95% CI, 28.6-35.3) nicotine, 1% (43.4; 95% CI, 40.2-46.6) vs 5% (31.2; 95% CI, 27.7-34.6) nicotine, and menthol-flavored (43.2; 95% CI, 39.7-46.7) vs tobacco-flavored (31.5; 95% CI, 28.4-34.7) e-liquids. Salt-based and 1% but not menthol-flavored nicotine elicited more intense puffing (eg, 25% [95% CI, 12%-40%] more total puffs for nicotine salts vs freebase). All study e-liquids reduced urges and cravings, with 5% vs 1% nicotine being more effective (mean [SE] QSU-Desire score at 35 minutes, 15.4 [0.5] vs 16.7 [0.5]). In this crossover randomized clinical trial among young adult e-cigarette users, salt-based (vs freebase) nicotine e-liquids increased nicotine intake and yielded more positive subjective effects ratings and intense puffing behaviors, suggesting higher abuse potential. Restricting the level of acidic additives and menthol flavoring may reduce the addictiveness of e-cigarettes. ClinicalTrials.gov Identifier: NCT05458895.

Feasibility of Home Collection for Urogenital Microbiome Samples.

Feasibility of home urogenital microbiome specimen collection is unknown. This study aimed to evaluate successful sample collection rates from home and clinical research centers. Adult women participants enrolled in a multicentered cohort study were recruited to an in-person research center evaluation, including self-collected urogenital samples. A nested feasibility substudy evaluated home biospecimen collection prior to the scheduled in-person evaluation using a home collection kit with written instructions, sample collection supplies, and a Peezy™ urine collection device. Participants self-collected samples at home and shipped them to a central laboratory 1 day prior to and the day of the in-person evaluation. We defined successful collection as receipt of at least one urine specimen that was visibly viable for sequencing. Of 156 participants invited to the feasibility substudy, 134 were enrolled and sent collection kits with 89% (119/134) returning at least 1 home urine specimen; the laboratory determined that 79% (106/134) of these urine samples were visually viable for analysis. The laboratory received self-collected urine from the research center visit in 97% (115/119); 76% (91/119) were visually viable for sequencing. Among 401 women who did not participate in the feasibility home collection substudy, 98% (394/401) self-collected urine at the research center with 80% (321/401) returned and visibly viable for sequencing. Home collection of urogenital microbiome samples for research is feasible, with comparable success to clinical research center collection. Sample size adjustment should plan for technical and logistical difficulties, regardless of specimen collection site.

Remote observation of hands-on problem solving among preschool children: Methodological challenges and solutions

ABSTRACT Innovative methods for remote data collection, developed during the COVID-19 pandemic, also carry value for extending the reach of future research. Using the case study of an evaluation of children’s learning from Sesame Street, this methodological paper discusses challenges of assessing preschool children’s hands-on problem solving remotely via video chat, as well as techniques that were used to overcome these challenges, to yield rich, reliable data. These techniques pertained to every phase of the research: materials and preparatiory work prior to data collection, procedural and technical considerations during sessions (including enlisting assistance from the children’s parents), managing children’s behavior, preventing parents from influencing their children’s responses, and considerations during data analysis. Although remote methods should not replace in-person research in all cases, they hold the potential for increasing the geographic and demographic diversity of samples, thus producing more representative and generalizable data.

Feasibility of an Online Acute Stressor in Preschool Children of Mothers with Depression.

Maternal depression is a risk factor for future mental health problems in offspring, with stress-system function as a candidate vulnerability factor. Here we present initial validation of an online matching-task (MT) paradigm in young children exposed to maternal depression (N=40), a first in stressor-paradigm research for this age group. Investigations of stress-system reactivity that can be conducted online are an innovative assessment approach, accelerated by the COVID-19 pandemic. Results indicate high feasibility, with a >75% data collection success rate across measures, similar-to or better-than in-person success rates in young children. Overall, the online MT elicited significant heart rate but not cortisol reactivity. Individual differences in child mental health symptoms were a moderator of reactivity to the stressor such that children with lower, but not higher, behavioral problems exhibited the typical pattern of cortisol reactivity to the online MT. Results are aligned with allostatic load models, which suggest downregulation of stress-system reactivity as a result of experiencing adversity and mental health vulnerability. Consistent with in-person research, this suggests that an early phenotype for the emergence of behavior problems may be linked to altered stress-system reactivity. Results hold potential clinical implications for intervention development and the future of online stress-system research. Trial Registration: Clinical Trial Registration: NCT04639557; (Building Regulation in Dual Generations-Telehealth Model [BRIDGE]).

Human Epidemiology and Response to SARS-CoV-2 (HEROS): objectives, design, and enrollment results of a 12-city remote observational surveillance study of households with children, using direct-to-participant methods.

The Human Epidemiology and Response to SARS-CoV-2 (HEROS) Study is a prospective, multicity, 6-month incidence study conducted from May 2020 to February 2021. The objectives were to identify risk factors for SARS-CoV-2 infection and household transmission among children and people with asthma and allergic diseases, and to use the host nasal transcriptome sampled longitudinally to understand infection risk and sequelae at the molecular level. To overcome challenges of clinical study implementation due to the coronavirus pandemic, this surveillance study used direct-to-participant methods to remotely enroll and prospectively follow eligible children who are participants in other National Institutes of Health-funded pediatric research studies and their household members. Households participated in weekly surveys and biweekly nasal sampling regardless of symptoms. The aim of this report is to widely share the methods and study instruments and to describe the rationale, design, execution, logistics, and characteristics of a large, observational, household-based, remote cohort study of SARS-CoV-2 infection and transmission in households with children. The study enrolled a total of 5598 individuals, including 1913 principal participants (children), 1913 primary caregivers, 729 secondary caregivers, and 1043 other household children. This study was successfully implemented without necessitating any in-person research visits and provides an approach for rapid execution of clinical research. Trial registration: ClinicalTrials.gov. Identifier: NCT04375761.

Obtaining Consent for Research on Risky Behaviours Among Adolescents in Canada: A Scoping Review.

This scoping review explores current practices for obtaining consent in research on risky behaviours among adolescents in Canada. The JBI methodology for scoping reviews was used. The database search was conducted in August 2021 and updated in November 2022. Papers published in 2010 or later were included. Extracted data included study characteristics, sample characteristics, and consent procedures. The review included 83 reports covering 57 studies. Nearly 60% of studies relied on adolescent self-consent for participation. Adolescent self-consent was more common than parental/guardian consent for studies using in-person research methods, older adolescent groups, and particularly vulnerable populations. Parental/guardian consent was more common for studies using younger age groups and general population samples. Adolescent self-consent was more common than parental/guardian consent for most risky behaviours covered by this review. These results provide insight into current consent practices in this area and offer guidance to researchers and institutional review boards in Canada.

I'll have what She's having (but not what They're having): The moderating role of group membership in the effect of social norms on food choice in an online environment

The modern food-rich environment has contributed to the rise of unhealthy diets linked to noncommunicable diseases. Previous in-person research has found that the effect of social norms on food intake is greater when set by a perceived in-group member relative to an out-group member. Given recent increased social media use, we investigated whether this effect of group membership extends to food choices and to normative information presented remotely online. Participants (N = 179 female university students, 18–32 years) viewed a Facebook page pertaining to either their university (in-group) or a rival university (out-group). They were presented with either a healthy or an unhealthy norm via a post in which a student discussed their order at a café on the relevant campus. Food choice was assessed through an online menu where participants were asked to order one main, side, and dessert dish. As predicted, participants who viewed the healthy norm ordered a higher percentage of healthy items (especially in the desserts category) relative to those who viewed the unhealthy norm. However, this effect was significant only for those in the in-group condition; there was no such pattern for participants in the out-group condition. These findings provide insight into the role of group membership in the effect of social norms, and have practical implications regarding the design of identity-based social media health campaigns to promote healthier eating behaviours.

A Scoping Review on Mobile Health Technology for Assessment and Intervention of Upper Limb Motor Function in Children with Motor Impairments.

Upper limb (UL) motor dysfunctions impact residual movement in hands/shoulders and limit participation in play, sports, and leisure activities. Clinical and laboratory assessments of UL movement can be time-intensive, subjective, and/or require specialized equipment and may not optimally capture a child's motor abilities. The restrictions to in-person research experienced during the COVID-19 pandemic have inspired investigators to design inclusive at-home studies with child participants and their families. Relying on the ubiquity of mobile devices, mobile health (mHealth) applications offer solutions for various clinical and research problems. This scoping review article aimed to aggregate and synthesize existing research that used health technology and mHealth approaches to evaluate and assess the hand function and UL movement in children with UL motor impairment. A scoping review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) model was conducted in March 2023 yielding 25 articles (0.32% of 7891 studies). Assessment characteristics included game or task-based tests (13/25, 52%), primarily for neurological disorders (e.g., autism spectrum disorder [ASD], dystonia, dysgraphia) or children with cerebral palsy (CP). Although several mHealth studies were conducted in the clinical environment (10/25, 40%), studies conducted at home or in nonclinical settings (15/25, 60%) reported acceptable and highly satisfactory to the patients as minimizing the potential risks in participation. Moreover, the remaining barriers to clinical translation included object manipulation on a touch screen, offline data analysis, real-world usability, and age-appropriate application design for the wider population. However, the results emphasize the exploration of mHealth over traditional approaches, enabling user-centered study design, family-oriented methods, and large-scale sampling in future research.

Lessons From the Coronavirus Disease Experience: Research Participant and Staff Satisfaction With Remote Cognitive Evaluations.

In New York City in 2020 the pandemic shut down in-person research. Icahn School of Medicine's Alzheimer's Disease Research Center transitioned longitudinal evaluations from in-person to telephone to enhance equity of access. We assessed diverse research participants' and clinical research coordinators' (CRC) satisfaction with remote evaluation and examined sociodemographic, cognitive, and behavioral factors that might impact satisfaction. Data collected: 241 participants with Clinical Dementia Rating (CDR) = 0/0.5 (3/2020 to 6/2021). A Telehealth Satisfaction Questionnaire for CRCs and participants was administered at the end of remote evaluations. We compared Telehealth Satisfaction Questionnaire items by CDR and Geriatric Depression Scale. Participants' mean age was 78.4, 61.4% were females, 16.2% were Hispanic, 17.1% Asian, 15.8% were non-Hispanic black, and 72.6% CDR = 0. Participant satisfaction was high [14.1 ± 1.4 (out of 15)] but was lower among those with depression. CRC satisfaction was high [16.9 ± 1.8 (out of 18)] but was lower concerning the ability to explain the test battery and interact with participants with CDR = 0.5. Telephone research assessments provide flexibility in a hybrid model. They offer equitable access to research participation for those who do not use computer technology and may promote the retention of diverse elderly research participants.

Protocol optimization and reducing dropout in online research.

Online research has advantages over in-person research; it's cost-efficient, scalable, and may increase diversity. Researchers collecting data online can assess protocol performance with classification models like a decision tree. However, challenges include attrition, lack of testing environment controls, technical limitations, and lack of face-to-face rapport and real time feedback. It is necessary to consider human factors of the teleresearch process from recruitment to data collection. Here we document the impact of protocol optimizations on social media engagement and retention between a pilot sample of Veterans (n = 26) and a post-optimization sample of both Veterans and civilians (n = 220) recruited from Facebook advertisements. Two-sided tests for equality of proportions were statistically significant: advertisement views leading to clicks increased by 23.8% [X2(1) = 130.3, p < 0.001] and completion of behavioral tasks increased by 31.2% [X2(1) = 20.74, p < 0.001]. However, a proportion of participants dropped out of the study before completion for both samples. To explore why, a C5.0 decision tree was used to find features that classify participant dropout. The features chosen by the algorithm were nicotine use (100%) and cannabis use (25.6%). However, for those completing the study, data quality of cognitive performance was similar for users and nonusers. Rather than determining eligibility, participants who endorse using nicotine, or both nicotine and cannabis, may have individual differences that require support in online protocols to reduce drop out, such as extra breaks. An introduction page that humanizes participants' lifestyle habits as a naturalistic benefit of remote research may also be helpful. Strategies are discussed to increase engagement and improve data quality. The findings have implications for the feasibility of conducting remote research, an increasingly popular approach that has distinct challenges compared to in-person studies.

Exploring the Acceptability and Feasibility of Remote Blood Pressure Measurements and Cognition Assessments Among Participants Recruited From a Safety-Net Emergency Department (Reach Out Cognition): Nonrandomized Mobile Health Trial.

Hypertension is a prevalent cardiovascular risk factor disproportionately affecting Black Americans, who also experience a higher incidence of Alzheimer disease and Alzheimer disease-related dementias. Monitoring blood pressure (BP) and cognition may be important strategies in reducing these disparities. The objective of the Reach Out Cognition study was to explore the feasibility and acceptability of remote cognitive and BP assessments in a predominantly Black, low-income population. Reach Out was a randomized, controlled, mobile health-based clinical trial to reduce BP among patients with hypertension at an emergency department in a safety-net hospital (ie, a US hospital in which 25% of the patients are Medicaid recipients). Upon conclusion of Reach Out, participants were given the option of continuing into an extension phase, Reach Out Cognition, that included Bluetooth-enabled BP monitoring and digital cognitive assessments for 6 months. Digital cognitive assessments were text message-linked online surveys of the Self-Administered Gerocognitive Exam and Quality of Life in Neurological Disorders scale. BP assessments were measured with Bluetooth-enabled BP cuffs paired with an app and the data were manually sent to the research team. Outcomes were feasibility (ie, enrollment and 3- and 6-month completion of digital cognitive and BP assessments) and acceptability of assessments using a 4-item validated survey, ranging from 1 (not acceptable) to 5 (completely acceptable). Of the 211 Reach Out participants, 107 (50.7%) consented and 71 (33.6%) completed enrollment in Reach Out Cognition. Participants had a mean age of 49.9 years; 70.4% were female and 57.8% identified as Black. Among the 71 participants, 51 (72%) completed cognitive assessments at 3 months and 34 (48%) completed these assessments at 6 months. BP assessments were completed by 37 (52%) and 20 (28%) of the 71 participants at 3 and 6 months, respectively. Participants were neutral on the acceptability of the digital cognitive assessments (mean 3.7) and Bluetooth self-measured BP (SMBP) monitoring (mean 3.9). Participants noted challenges syncing the BP cuff to the app, internet connection, and transmitting the data to the research team. Enrollment and assessment completion were low, while acceptability was moderate. Technological advances will eliminate some of the Bluetooth SMBP barriers and offer new strategies for cognitive assessments. Subsequent studies could benefit from offering more comprehensive support to overcome Bluetooth-related hurdles, such as personalized training materials, video conferencing, or in-person research team support. Alternatively, strategies that do not require pairing with an app and passive transmission of data could be considered. Overall, further research is warranted to optimize participant engagement and overcome technological challenges. ClinicalTrials.gov NCT03422718; https://clinicaltrials.gov/study/NCT03422718.

Operational changes to the lupus intervention fatigue trial as a result of COVID-19: An update to the study protocol

BackgroundThe coronavirus disease 2019 (COVID-19) global pandemic drastically impacted the health system and the research community. As a result, research institutions and funding agencies recommended a moratorium on conducting in-person research and study enrollment until protocol changes to protect participant safety were approved and implemented. We detail the operational modifications made to the Lupus Intervention Fatigue Trial (LIFT) protocol and summarize how we met the varied challenges created by COVID-19. MethodsWe evaluated study protocols and determined that scheduling, acquiring consent, in-person assessments and intervention baseline visits, patient reported outcomes, and data processing procedures needed modification. ResultsOperational modifications were made to ensure study progress while adhering to COVID-19 restrictions. Major changes included electronic consent, remote baseline visits for those in the intervention, self-report outcome measures at home via emailed weblinks, and telemedicine physician assessment visits. The collection of safety labs presented the largest challenge since this required an in-person visit to a laboratory. The study team elected to delay this up to one month after the physician assessment. All follow-up visits were completed, and no participants withdrew from the study. ConclusionLIFT was severely impacted by COVID-19. We provide insight into how our study protocol was modified without compromising the integrity of the primary and secondary outcomes of the study. The modifications utilized by the LIFT study resulted in efficiencies that will be included in a revised protocol and may serve as a useful example for other behavioral interventions to adapt their research studies.

Online Focus Group Discussions to Engage Stigmatized Populations in Qualitative Health Research: Lessons Learned

Community participation in research involving stigmatized populations has been sub-optimal, and digital tools could potentially increase participation in qualitative research. This study aims to describe the implementation of an online chat-based FGD (Focus Group Discussion) with men who have sex with men (MSM) in China as part of formative research for the PIONEER project, determine the advantages and limitations associated with the approach, and assess the feasibility of deepening community participation in STI research. Participants were involved in four days of asynchronous FGDs on sexually transmitted diseases and answered questions about the online FGD method. Online FGDs allowed us to deepen participant engagement through bidirectional communication channels. Data from online FGDs directly informed recruitment strategies and community participation for a clinical trial. Overall, 63% (29/46) of men who had never participated in offline LGBTQ + activities joined online FGDs. Many participants (89%, 41/46) noted that online FGDs were more convenient, less socially awkward, and more anonymous than in-person qualitative research. We highlighted potential risks as well as mitigation strategies when using online FGDs. Online FGDs were feasible among this group of sexual minorities and may be particularly useful in many cities where stigma limits in-person research participation.

Research Staff COVID-19 Pandemic Survey-Results from the Prevention and Early Treatment of Acute Lung Injury (PETAL) Network

Objectives: There is a lack of knowledge about the challenges of researchers who continued in-person research during the early phases of the COVID-19 pandemic. Design: Electronic survey assessing work-related exposure to COVID-19, logistical challenges, and procedural changes during the first year of the COVID-19 pandemic on clinical research. Setting: National Heart, Lung, and Blood Institute-sponsored Prevention and Early Treatment of Acute Lung Injury Clinical Trial Network Centers. Subjects: Research staff at research Network Sites. Measurements and Main Results: The 37-question survey was completed by 277 individuals from 24 states between 29 September 2020, and 12 December 2020, yielding a response rate of 37.7%. Most respondents (91.5%) indicated that non-COVID-19 research was affected by COVID-19 research studies. In response to the COVID-19 pandemic, 20% of respondents were reassigned to different roles at their institution. Many survey takers were exposed to COVID-19 (56%), with more than 50% of researchers requiring a COVID-19 test and 8% testing positive. The fear of infection was 2.7-times higher compared to pre-COVID-19 times. Shortages of personal protective equipment were encountered by 34% of respondents, primarily due to lack of access to N95 masks, followed by gowns and protective eyewear. Personal protective equipment reallocation from research to clinical use was reported by 31% of respondents. Most of the respondents (88.5%), despite these logistical challenges, indicated their willingness to enroll COVID-19 patients. Conclusions: During the first year of the COVID-19 pandemic, members of the research network were engaged in COVID-19 research despite logistical challenges, limited access to personal protective equipment, and fear of exposure. The research network’s survey experience can inform ongoing policy discussions to create research enterprises that can dexterously refocus research to address the knowledge gaps associated with novel public health emergencies while mitigating the effect of pandemics on existing research projects and research personnel.

Conducting Social Science Research During Epidemics and Pandemics: Lessons Learnt.

The COVID-19 pandemic has had a significant impact on how field-based research is being conducted globally. Given the challenges of undertaking fieldwork during epidemics and the need for mixed methods research to address the social, political, and economic issues related to epidemics, there is a small but growing body of evidence in this area. To contribute to the logistical and ethical considerations for conducting research during a pandemic, we draw on the challenges and lessons learnt from adapting methods for two research studies conducted in 2021 during the COVID-19 pandemic in low- and middle-income country (LMIC) settings: (1) in-person research in Uganda and (2) combined remote and in-person research in South and Southeast Asia. Our case studies focus on data collection and demonstrate the feasibility of conducting mixed methods research, even with many logistical and operational constraints. Social science research is often used to identify the context of specific issues, to provide a needs assessment, or inform longer-term planning; however, these case studies have shown the need to integrate social science research from the start of a health emergency and in a systematic way. Social science research during future health emergencies can also inform public health responses during the emergency. It is also crucial to collect social science data after health emergencies to inform future pandemic preparedness. Finally, researchers need to continue research on other public health issues that are ongoing even during a public health emergency.

Assessing geographic disparities in mental health research participation

BackgroundLarge geographic health disparities are well-documented within the U.S. Although approximately 60 million Americans—or roughly 20% of the total U.S. population—live in rural areas, rural residents may be less likely to participate in health research, including mental health research, due to multiple barriers. This retrospective analysis evaluated the urbanity and rurality of inpatient research participants and potential research participants over a five-year period at the Experimental Therapeutics and Pathophysiology Branch (ETPB), NIMH-NIH (Bethesda, Maryland), which conducts experimental medicine and neurobiological research in mood disorders. MethodsParticipant and potential participant zip codes were converted to Rural Urban Commuting Area (RUCA) codes (1–3 urban, 4–10 rural). These results were compared with each other and with U.S. population data. ResultsThe analysis included 182 research participants and 1864 potential research participants; the former were admitted to an in-person research unit and the latter were screened by phone or online. ETPB research participants had an urban residence rate of 93.4% and a rural residence rate of 6.6%. Potential ETPB research participants had an urban residence rate of 90.9% and a rural residence rate of 9.1%. In comparison, the U.S. urban residence rate is 80% and the rural rate is 20%. ConclusionAt the ETPB, both research participants with mood disorders admitted to an in-person research unit and potential research participants screened online or by phone from rural areas were under-represented relative to participants from more urban areas. Further study of research recruitment barriers in rural areas of the U.S is needed.

Blood Pressure and Self-management in Black Women With Hypertension: Protocol Revisions to the Brain Relationships Among Information, Neuroprocessing, and Self-Management Study Due to the COVID-19 Pandemic

The COVID-19 pandemic and the halt to in-person research activities beginning in March 2020 brought new challenges to protocol development and implementation. Due to the pandemic, we had to revise our protocol for the Brain Relationships Among Information, Neuroprocessing, and Self-Management (BRAINS) study, which was designed to examine health information behavior, brain activity, diabetes status, and self-management behavior among Black women with hypertension. This report outlines 7 steps describing how our research team (1) revised the BRAINS study protocol, (2) implemented a remote method of data collection, and (3) mitigated the challenges we faced. Prior to March 2020, Black women with hypertension were invited to participate in the BRAINS study to undergo a functional magnetic resonance imaging scan, complete surveys, have their blood pressure measured, and have their blood drawn. After these measures were collected, participants would receive phone calls from a dietician to complete two 24-hour dietary recalls using the Nutrition Data System for Research. Our revised protocol relied on a web-based, interactive approach. Participants received a study kit that included an Omron automatic home blood pressure monitor and a hemoglobin A1c kit from the DTIL laboratory. In a Zoom meeting with each participant, our team played an introductory video, administered surveys (via Qualtrics), and guided participants through measuring their blood pressure and performing a finger stick to collect a blood sample for hemoglobin A1c testing. We examined cognitive function using the TestMyBrain Digital Neuropsychology Toolkit, as we were unable to access the functional magnetic resonance imaging laboratory to assess brain activity. The 7 steps in revising our protocol were as follows: conceptualizing the move from in-person to remote study activities (step 1); contacting the funders (step 2); submitting changes for Institutional Review Board approval (step 3); preparing to implement the revised protocol (step 4); implementing the study changes (step 5); mitigating challenges (step 6); and evaluating protocol implementation (step 7). Approximately 1700 individuals responded to web-based advertisements about the BRAINS study. A total of 131 individuals completed our eligibility screener. We conducted our first Zoom appointment in July 2020 and our last Zoom appointment in September 2020. Using our revised strategies, a total of 99 participants completed all study measures within a 3-month period. In this report, we discuss successes and challenges in revising our protocol and reaching our population of interest remotely, safely, and effectively. The information we have outlined can help researchers create similar protocols to reach and conduct research remotely with diverse populations, such as individuals who are unable to participate in studies in person. DERR1-10.2196/43849.