Enhancing community preparedness: an inventory and analysis of disaster citizen science activities.

BACKGROUND: Disaster citizen science, or the use of scientific principles and methods by "non-professional" scientists or volunteers, may be a promising way to enhance public health emergency preparedness (PHEP) and build community resilience. However, little research has focused on understanding this emerging field and its implications for PHEP. To address research gaps, this paper: (1) assesses the state of disaster citizen science by developing an inventory of disaster citizen science projects; (2) identifies different models of disaster citizen science; and (3) assesses their relevance for PHEP. METHODS: We searched the English-language peer-reviewed and grey literature for disaster citizen science projects with no time period specified. Following searches, a team of three reviewers applied inclusion/exclusion criteria that defined eligible disasters and citizen science activities. Reviewers extracted the following elements from each project: project name and description; lead and partner entities; geographic setting; start and end dates; type of disaster; disaster phase; citizen science model; and technologies used. RESULTS: A final set of 209 projects, covering the time period 1953-2017, were included in the inventory. Projects were classified across five citizen science models: distributed or volunteer sensing (n = 19; 9%); contributory (n = 98; 47%); distributed intelligence (n = 52; 25%); collaborative research (n = 32; 15%); and collegial research (n = 8; 4%). Overall, projects were conducted across all disaster phases and most frequently for earthquakes, floods, and hurricanes. Although activities occurred globally, 40% of projects were set in the U.S. Academic, government, technology, and advocacy organizations were the most prevalent lead entities. Although a range of technologies were used, 77% of projects (n = 161) required an internet-connected device. These characteristics varied across citizen science models revealing important implications for applications of disaster citizen science, enhancement of disaster response capabilities, and sustainability of activities over time. CONCLUSIONS: By increasing engagement in research, disaster citizen science may empower communities to take collective action, improve system response capabilities, and generate relevant data to mitigate adverse health impacts. The project inventory established a baseline for future research to capitalize on opportunities, address limitations, and help disaster citizen science achieve its potential.

The Use of and Experiences With Telelactation Among Rural Breastfeeding Mothers: Secondary Analysis of a Randomized Controlled Trial.

BACKGROUND: Telelactation services connect breastfeeding mothers to remotely located lactation consultants through audio-visual technology and can increase access to professional breastfeeding support in rural areas. OBJECTIVE: The objective of this study was to identify maternal characteristics associated with the demand for and use of telelactation and to describe visit characteristics. METHODS: We conducted a descriptive study within the context of a randomized controlled trial. Participant survey data and vendor electronic medical record data were used to assess video call characteristics like timing, duration, topics discussed, and participant satisfaction. Recruitment occurred from 2016-2018 at a rural critical access hospital in Pennsylvania. The 102 women enrolled in the study were given access to unlimited, on-demand video calls with lactation consultants through a mobile phone app and were tracked for 12 weeks following their postpartum hospitalization. RESULTS: A total of 94 participants out of 102 recruits (92%) participated in the final, 12-week survey assessment were included in the analysis. Of those, 47 (50%) participants reported participating in one or more video calls, and 31 (33%) completed one or more calls that included a substantive discussion of a breastfeeding challenge. Participants who used telelactation (21/31, 68%; P=.02) were more likely to be working at 12 weeks postpartum compared to others (26/63, 41%), were less likely (12/31, 39%; P=.02) to have prior breastfeeding experience on average compared to nonusers (41/63, 65%), and were less likely to have breastfed exclusively (16/31, 52%; P<.001) prior to hospital discharge compared to mothers who didn't use telelactation services (51/63, 81%). Most video calls (58/83, 70%) occurred during the infant's first month of life and 41% (34/83) occurred outside of business hours. The most common challenges discussed included: breast pain, soreness, and infection (25/83, 30%), use of nipple shields (21/83, 25%), and latch or positioning (17/83, 24%). Most telelactation users (43/47, 91%) expressed satisfaction with the help received. CONCLUSIONS: Telelactation is an innovation in the delivery of professional breastfeeding support. This research documents both demand for and positive experiences with telelactation in an underserved population. TRIAL REGISTRATION: ClinicalTrials.gov NCT02870413; https://clinicaltrials.gov/ct2/show/NCT02870413.

Telelactation via Mobile App: Perspectives of Rural Mothers, Their Care Providers, and Lactation Consultants.

Background: Rural-urban disparities exist in breastfeeding rates and availability of lactation support. Direct-to-consumer (DTC) telelactation that uses two-way video through personal devices has the potential to increase access to international board-certified lactation consultants (IBCLCs) in rural settings that lack them. This study describes the feasibility and acceptability of DTC telelactation for rural mothers.Methods: We conducted semi-structured interviews among various stakeholders involved in a study exploring the impact of telelactation through mobile phone app in rural Pennsylvania. Interviewees included mother participants assigned to receive telelactation (n = 17), IBCLCs employed by the telelactation vendor (n = 7), and nurses (n = 2) and physicians (n = 1) caring for mother participants at the recruitment hospital. Thematic content analysis was used to analyze qualitative data.Results: Interviewees reported that telelactation was convenient and efficient, provided a needed service in rural areas lacking breastfeeding support services, and increased maternal breastfeeding confidence. Telelactation was noted to have several advantages over in-person and telephone-based support. Barriers to use included maternal reluctance to conduct video calls with an unknown provider, preference for community-based breastfeeding resources, and technical issues including limited WiFi in rural areas.Conclusions: Among rural women who experience inequitable access to qualified breastfeeding support resources, DTC telelactation appears to be an acceptable delivery model for lactation assistance.

Exploring economic empowerment and gender issues in Lesotho's Child Grants Programme: a qualitative study.

Cash transfers (CTs) have been increasingly used in low- and middle-income countries as a poverty reduction and social protection tool. Despite their potential for empowering vulnerable groups (especially women), the evidence for such outcomes remains unclear. Additionally, little is known about how this broad concept fits into and is perceived in such programmes. For example, Lesotho's Child Grants Programme (CGP) is an unconditional CT targeting poor and vulnerable households with children. The CGP has been presented as one of the Lesotho's flagship programmes in developing the country's social safety net system. Using the CGP's early phases as a case study, this research aims to capture how programme stakeholders understood and operationalized the concept of economic empowerment (especially women's) in Lesotho's CGP. The qualitative analysis relied on the triangulation of information from a review of programme documents and semi-structured key informant interviews with programme stakeholders. First, the programme documents were coded deductively, while the interview transcripts were coded inductively, and then both materials were analysed thematically. Finally, differences or disagreements within each theme were explored individually according to the programme's chronology, the stakeholders' affiliation and their role in the CGP. The complexity of economic empowerment was reflected in the diversity of definitions found in the desk review and interviews. Economic empowerment was primarily understood as improving access to economic resources and opportunities and, less so, as agency and social and economic inclusion. There were stronger disagreements on other definitions as they seemed to be a terminology primarily used by specific stakeholders. This diversity of definitions impacted how these concepts were integrated into the programme, with particular gaps between the strategic vision and operational units as well as between the role this concept was perceived to play and the effects evaluated so far.

Exploring health equity in Lesotho's Child Grants Programme.

Despite their growing popularity, little is known about how cash transfers (CTs) can affect health equity in targeted communities. Lesotho's Child Grants Programme (CGP) is an unconditional CT targeting poor and vulnerable households with children. Started in 2009, the CGP is one of Lesotho's key programmes in developing the country's social protection system. Using the CGP's early phases as a case study, this research aims to capture how programme stakeholders understood and operationalized the concept of health equity in Lesotho's CGP. The qualitative analysis relied on the triangulation of findings from a desk review and semi-structured key informant interviews with programme stakeholders. The programme documents were coded deductively and the interview transcripts inductively. Both materials were analysed thematically before triangulating their findings. We explored determining factors for differences or disagreements within a theme according to the programme's chronology, the stakeholders' affiliations and their role(s) in the CGP. The definitions of health equity in the context of the CGP reflected an awareness among stakeholders of these issues and their determinants but also the challenges raised by the complex (or even debated) nature of the concept. The most common definition of this concept focused on children's access to health services for the most disadvantaged households, suggesting a narrow, targeted approach to health equity as targeting disadvantages. Yet, even the most common definition of this concept was not fully translated into the programme, especially in the day-to-day operations and reporting at the local level. This operationalization gap affected the study of selected health spillover effects of the CGP on health equity and might have undermined other programme impacts related to specific health disadvantages or gaps. As equity objectives become more prominent in CTs, understanding their meaning and translation into concrete, observable and measurable applications in programmes are essential to support impact.

Have COVID-19 Stimulus Packages Mitigated the Negative Health Impacts of Pandemic-Related Job Losses? A Systematic Review of Global Evidence from the First Year of the Pandemic.

Social protection can buffer the negative impacts of unemployment on health. Have stimulus packages introduced during the COVID-19 pandemic mitigated potential harms to health from unemployment? We performed a systematic review of the health effects of job loss during the first year of the pandemic. We searched three electronic databases and identified 49 studies for inclusion. Three United States-based studies found that stimulus programs mitigated the impact of job loss on food security and mental health. Furloughs additionally appeared to reduce negative impacts when they were paid. However, despite the implementation of large-scale stimulus packages to reduce economic harms, we observed a clear pattern that job losses were nevertheless significantly associated with negative impacts, particularly on mental health, quality of life, and food security. We also observe suggestive evidence that COVID-related job loss was associated with child maltreatment, worsening dental health, and poor chronic disease outcomes. Overall, although we did find evidence that income-support policies appeared to help protect people from the negative health consequences of pandemic-related job loss, they were not sufficient to fully offset the threats to health. Future research should ascertain how to ensure adequate access to and generosity of social protection programs during epidemics and economic downturns.

Factors Explaining State Differences in Applying for a Recent Long-Term Care Program that Promotes Aging in Place: Perspectives of Medicaid Administrators.

Older adults in need of assistance often prefer to remain at home rather than receive care in an institution. To meet these preferences, Medicaid invited states to apply for the Balancing Incentive Program (BIP), a program intended to "rebalance" Medicaid-financed long-term services and supports to Home- and Community-Based Services (HCBS). However, only about half of eligible states applied. We interviewed Medicaid administrators to explore why some states applied for BIP whereas others did not. Supportive state leadership and the presence of other programs supporting community-based care were positively related to BIP application. Opposing policy priorities and programs competing for similar resources were negatively related to BIP application. Because states most likely to apply already had policy goals and programs supporting HCBS, BIP may inadvertently widen disparities across states, pushing those on the margins ahead and leaving the ones that are worst off in HCBS support to fall even further behind.

Facilitating stakeholder engagement in early stage translational research.

INTRODUCTION: Stakeholder engagement can play an important role in increasing public trust and the understanding of scientific research and its impact. Frameworks for stakeholder identification exist, but these frameworks may not apply well to basic science and early stage translational research. METHODS: Four Clinical and Translational Science Award (CTSA) hubs led six focus groups and two semi-structured interviews using a semi-structured discussion guide to learn from basic science researchers about stakeholder engagement in their work. The 24 participants represented fourteen clinical and academic disciplines. RESULTS: Early stage translational researchers reported engagement with a broad array of stakeholders. Those whose research has a clinical focus reported working with a more diverse range of stakeholders than those whose work did not. Common barriers to stakeholder engagement were grouped into three major themes: a poor definition of concepts, absence of guidance, and limited resources. DISCUSSION: The National Center for Advancing Translational Sciences (NCATS), the consortium of CTSAs, and the individual CTSA "hubs" are three actors that can help early stage translational researchers develop shared terms of reference, build the necessary skills, and assemble the appropriate resources for engaging stakeholders in Clinical and Translational Research. Getting this right will involve a coordinated push by all three entities.

Rural-Urban Disparities in Access to Home- and Community-Based Services and Supports: Stakeholder Perspectives From 14 States.

OBJECTIVES: Trends over time in the United States show success in rebalancing long-term services and supports (LTSS) toward increased home- and community-based services (HCBS) relative to institutionalized care. However, the diffusion and utilization of HCBS may be inequitable across rural and urban residents. We sought to identify potential disparities in rural HCBS access and utilization, and to elucidate factors associated with these disparities. DESIGN: We used qualitative interviews with key informants to explore and identify potential disparities and their associated supply-side factors. SETTING AND PARTICIPANTS: We interviewed 3 groups of health care stakeholders (Medicaid administrators, service agency managers and staff, and patient advocates) from 14 states (n = 40). MEASURES: Interviews were conducted using a semistructured interview guide, and data were thematically coded using a standardized codebook. RESULTS: Stakeholders identified supply-side factors inhibiting rural HCBS access, including limited availability of LTSS providers, inadequate transportation services, telecommunications barriers, threats to business viability, and challenges to caregiving workforce recruitment and retention. Stakeholders perceived that rural persons have a greater reliance on informal caregiving supports, either as a cultural preference or as compensation for the dearth of HCBS. CONCLUSIONS/IMPLICATIONS: LTSS rebalancing efforts that limit the institutional LTSS safety net may have unintended consequences in rural contexts if they do not account for supply-side barriers to HCBS. We identified supply-side factors that (1) inhibit beneficiaries' access to HCBS, (2) affect the adequacy and continuity of HCBS, and (3) potentially impact long-term business viability for HCBS providers. Spatial isolation of beneficiaries may contribute to a perceived lack of demand and reduce chances of funding for new services. Addressing these problems requires stakeholder collaboration and comprehensive policy approaches with attention to rural infrastructure.

Mental Health Service Preferences and Utilization Among Women Veterans in Crisis: Perspectives of Veterans Crisis Line Responders.

Women military veterans are at increased risk of suicide compared to non-veterans, but little is known about the mental health service preferences and needs of women veterans in crisis. This study used qualitative, secondary source key informant interviews to ascertain the experiences of women veterans in crisis from 54 responders working at the Veterans Crisis Line. Responders indicated that women veterans reported different experiences with Veterans Administration (VA) and non-VA care, though drivers of satisfaction or dissatisfaction were similar. Availability of specialty care, sensitivity to veterans' issues or Military Sexual Trauma, strong provider relationships, and continuity of care contributed to satisfaction; lengthy appointment wait times, limited service options, and insensitivity to veterans' issues contributed to dissatisfaction. Responders suggested that barriers limiting VA access for women veterans are perceived as similar to non-VA care. Findings suggest that caller experiences with providers drive satisfaction with VA and non-VA mental health services.

Evaluating the Impact of Policies to Regulate Involuntary Out-of-Network Charges on New Jersey Hospitals.

Policymakers must balance the complex and sometimes conflicting objectives of ensuring access to care, limiting the financial burden on patients, and controlling overall costs. States differ in how they handle involuntary out-of-network charges-i.e., payment for care when a patient does not have the option of selecting a hospital in his or her health plan's network. New Jersey's current regulations emphasize patient protection, in that patients are only responsible for the portion of the cost that they would have incurred for in-network care, and health plans must pay the remainder of the provider's charges. This policy is seen as contentious by health plans, who argue that they have been made responsible for paying whatever charges a hospital submits, and proposals to limit payments for involuntary out-of-network care are being debated in the state legislature. This study seeks to inform the current debate (as of October 2016) by analyzing the role of out-of-network payments in New Jersey hospitals' financial performance and simulating the effect of policies to limit charges for involuntary out-of-network care. The authors' estimates suggest that implementing New Jersey Bill A1952, which proposes a limit of between 90 and 200 percent of Medicare rates for involuntary out-of-network hospital care, would have reduced payments for hospital care by commercial plans by between 6 and 10 percent during 2010 through 2014. Assuming no change in operating expenses and no recoupment of lost out-of-network revenues, the cap would have led to an operating loss at between 48 and 70 percent of hospitals.

Expanding Suicide Crisis Services to Text and Chat.

BACKGROUND: Crisis support services have historically been offered by phone-based suicide prevention hotlines, but are increasingly becoming available through alternative modalities, including Internet chat and text messaging. AIMS: To better understand differences in the use of phone and chat/text services. METHOD: We conducted semistructured interviews with call responders at the Veterans Crisis Line who utilize multimodal methods to respond to veterans in crisis. RESULTS: Responders indicated that veterans may access the chat/text service primarily for reasons that included a desire for anonymity and possible inability to use the phone. Responders were divided on whether callers and chatters presented with different issues or risk of suicide; however, they suggested that veterans frequently use chat/text to make their first contact with mental health services. LIMITATIONS: We spoke with call responders, not the veterans themselves. Additionally, as this is qualitative research, applicability to other settings may be limited. CONCLUSION: While new platforms offer promise, participants also indicated that chat services can supplement phone lines, but not replace them.

Employer, Insurer, and Industry Perspectives on Patient-Centered Comparative Effectiveness Research: Final Report.

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit, nongovernmental organization authorized under the Affordable Care Act of 2010 and funded by Congress to help close the gaps in research needed to improve key health outcomes. To do this, PCORI identifies critical research questions, funds patient-centered comparative effectiveness research (CER), and strives to disseminate the results in ways that stakeholders, including patients, providers, health insurance purchasers, payers, and industry, will find useful. PCORI commissioned RAND and the National Pharmaceutical Council to conduct an independent study of the health-related decisions, information needs, understanding and use of CER, and opportunities for involvement of these three stakeholder communities in CER. RAND conducted ten telephone and Web-enabled focus groups involving representatives from all three communities. This article describes the key themes emerging from those discussions and presents implications for PCORI's work.

Suicide Risk among Women Veterans in Distress: Perspectives of Responders on the Veterans Crisis Line.

BACKGROUND: Women veterans are at increasingly high risk of suicide, but little is known about the concerns and needs of this population. This is, in part, owing to the low base rate of suicide and the inability to conduct retrospective interviews with individuals who died. In this study, we used a qualitative approach to gain insight about the concerns and nature of comments regarding suicidal ideation and intent among women veterans calling the Veterans Crisis Line (VCL). METHODS: Fifty-four VCL call responders were interviewed in the spring of 2015. They were asked about the concerns and level of suicide risk of women veteran callers with whom they have spoken and about the ways in which women callers are similar to or different from men callers. Interviews were transcribed and thematic analyses were conducted to examine patterns or themes emerging from the data. FINDINGS: Military sexual trauma and non-suicidal self-harm were two commonly reported concerns of women veteran callers according to responders. VCL responders also noted differences between men and women veteran callers, including differences in clinical presentation, suicidal means, and protective factors. CONCLUSIONS: Our findings shed light on potential avenues to prevent suicide among women veterans, although we spoke to VCL responders about their impressions, rather than to women veterans themselves. Efforts to 1) prevent and treat the consequences of military sexual trauma, 2) recognize, prevent, and treat non-suicidal self-harm, and 3) restrict access to lethal means most commonly reported among women veteran callers may be helpful to mitigate suicide risk in this vulnerable group of veterans.

Emergency Department Patient Experience of Care Survey: Development and Field Test.

The Centers for Medicare & Medicaid Services (CMS) have implemented Consumer Assessment of Healthcare Providers and Systems (CAHPS®) surveys to assess patient experience in a number of settings. Following CAHPS principles, RAND researchers designed and field tested an Emergency Department Patient Experience of Care Survey that consists of three survey instruments for use with adult patients who have visited the emergency department (ED). One instrument is for use with those patients who are discharged to the community following their ED visit; the other two are for use with those patients who are admitted to the hospital from the ED (one for use on its own and one to supplement an existing inpatient survey). The authors conducted a field test of these instruments in 12 hospitals in late 2013 and early 2014 and analyzed the resulting data from 4,101 ED patients. The analyses identified four composite measures (measures composed of responses to multiple survey questions) and ten measures that are each composed of a single survey question. As of September 2014, CMS plans to conduct additional testing on these instruments.