The Ethics and Practice of Digital Storytelling as a Methodology for Community-Based Participatory Research in Public Health

Moderator: Alice Fiddian-Green, PhD student, Department of Health Promotion and Practice, School of Public Health and Health Sciences, University of Massachusetts Amherst. Presenters and Session Titles: “An Ethics Framework for Digital Storytelling as a Multi-Purposed Public Health Method”: Aline Gubrium, PhD Applying the Ethics Framework in Two Projects: (1) Louis Graham, MPH, DrPH, and Sarah Lowe, MPW: “Stakeholder Engagement and Ethical Planning for Digital Storytelling: The MOCHA Moving Forward Project” (2) Mary Paterno, CNM, PhD: “Digital Storytelling as Health Promotion and Data: Ethical Considerations from a Peer-Mentor Based Project to Address Perinatal Substance Use Disorder in a Rural Community Session Description Public health often mislocates its lineage in the medical sciences. Being foremost about people and what happens when people live together, the field is equally rooted in the humanistic and social sciences. By providing a focus that is more open to the rich and variegated tapestry of health and wellbeing, participatory visual and digital approaches, such as digital storytelling, enhance understandings of health and well being. If carried out responsibly, digital storytelling has the potential to function both as a vehicle for community-based health promotion, and as a method for collecting culture-centered data that can assist researchers and practitioners in better serving local communities. Based on a Freirian model, which promotes active engagement as participants construct stories to promote change through a group process, the goal of our digital storytelling practice is to provide a creative forum for expressing the generative themes or collective issues of community members. Beyond being mere data points, digital stories enliven statistics, make research meaningful, and position research participants as experts in their own right by inviting them to define relevant issues, broaden the evidence base, and create an emotional product that attracts and influences policymakers and the public at large. Finally, digital stories can be re-purposed for use in health communication campaigns (on and offline) to effect broad reach. Published literature on the ethics of community-based participatory research methods grounded in personal storytelling and participatory media approaches is in short supply, as are advanced training opportunities for public health researchers interested in these approaches (Gubrium & Harper, 2013; Gubrium, Hill, and Flicker, 2014; Gubrium, Hill & Fiddian-Green, 2016). Based on their previous research and practice experiences with digital storytelling, Gubrium and colleagues (2014) discuss the “situated practice of ethics” for participatory visual and digital methods in public health research and practice. Specifically, they write about six common challenges faced by researchers, advocates, and health promotion practitioners alike: the fuzzy boundaries that arise when negotiating between research, advocacy/action, and health promotion practice when using these methods; tensions related to recruitment of participants and consent to participate; the complex considerations specific to the release of the digital materials produced in workshops; power issues as they relate to the shaping of both stories and digital media content; the potential for reproducing harm in visual/digital representation; and the promise of confidentiality/anonymity to research participants. The proposed breakout session will provide a brief overview of the digital storytelling process (including discussion of recruitment, informed consent and release of materials, standard activities in the digital storytelling process, follow-up semi-structured interviews with participants, pre/post measures used to evaluate the impact of the process on participants, data analysis, and strategic communications based on produced digital stories). The session will enable participants to understand the myriad ethical issues that can present when carrying out community-based participatory research that employs digital storytelling as a methodology. By the end of the session, participants will be able to demonstrate critically enhanced awareness of ethical issues surrounding participatory visual and digital methodologies and identify effective ways to address these issues

The Past, Present and Future of Sleep Measurement in Mild Cognitive Impairment and Early Dementia – Towards a Core Outcome Set:A Scoping Review

STUDY OBJECTIVES: Sleep abnormalities emerge early in dementia and may accelerate cognitive decline. Their accurate characterization may facilitate earlier clinical identification of dementia and allow for assessment of sleep intervention efficacy. This scoping review determines how sleep is currently measured and reported in Mild Cognitive Impairment (MCI) and early dementia, as a basis for future core outcome alignment. METHODS: This review follows the PRISMA Guidelines for Scoping Reviews. CINAHL, Embase, Medline, Psychinfo, and British Nursing Index databases were searched from inception—March 12, 2021. Included studies had participants diagnosed with MCI and early dementia and reported on sleep as a key objective/ outcome measure. RESULTS: Nineteen thousand five hundred and ninety-six titles were returned following duplicate removal with 188 studies [N] included in final analysis. Sleep data was reported on 17 139 unique, diagnostically diverse participants (n). “Unspecified MCI” was the most common diagnosis amongst patients with MCI (n = 5003, 60.6%). Despite technological advances, sleep was measured most commonly by validated questionnaires (n = 12 586, N = 131). Fewer participants underwent polysomnography (PSG) (n = 3492, N = 88) and actigraphy (n = 3359, N = 38) with little adoption of non-PSG electroencephalograms (EEG) (n = 74, N = 3). Sleep outcome parameters were reported heterogeneously. 62/165 (37.6%) were described only once in the literature (33/60 (60%) in interventional studies). There was underrepresentation of circadian (n = 725, N = 25) and micro-architectural (n = 360, N = 12) sleep parameters. CONCLUSIONS: Alongside under-researched areas, there is a need for more detailed diagnostic characterization. Due to outcome heterogeneity, we advocate for international consensus on core sleep outcome parameters to support causal inference and comparison of therapeutic sleep interventions

The Time-Domain Spectroscopic Survey: Understanding the Optically Variable Sky with SEQUELS in SDSS-III

The Time-Domain Spectroscopic Survey (TDSS) is an SDSS-IV eBOSS subproject primarily aimed at obtaining identification spectra of ~220,000 optically-variable objects systematically selected from SDSS/Pan-STARRS1 multi-epoch imaging. We present a preview of the science enabled by TDSS, based on TDSS spectra taken over ~320 deg^2 of sky as part of the SEQUELS survey in SDSS-III, which is in part a pilot survey for eBOSS in SDSS-IV. Using the 15,746 TDSS-selected single-epoch spectra of photometrically variable objects in SEQUELS, we determine the demographics of our variability-selected sample, and investigate the unique spectral characteristics inherent in samples selected by variability. We show that variability-based selection of quasars complements color-based selection by selecting additional redder quasars, and mitigates redshift biases to produce a smooth quasar redshift distribution over a wide range of redshifts. The resulting quasar sample contains systematically higher fractions of blazars and broad absorption line quasars than from color-selected samples. Similarly, we show that M-dwarfs in the TDSS-selected stellar sample have systematically higher chromospheric active fractions than the underlying M-dwarf population, based on their H-alpha emission. TDSS also contains a large number of RR Lyrae and eclipsing binary stars with main-sequence colors, including a few composite-spectrum binaries. Finally, our visual inspection of TDSS spectra uncovers a significant number of peculiar spectra, and we highlight a few cases of these interesting objects. With a factor of ~15 more spectra, the main TDSS survey in SDSS-IV will leverage the lessons learned from these early results for a variety of time-domain science applications.Comment: 17 pages, 14 figures, submitted to Ap

Interactions between environmental contaminants and gastrointestinal parasites: novel insights from an integrative approach in a marine predator

Environmental contaminants and parasites are ubiquitous stressors that can affect animal physiology and derive from similar dietary sources (co-exposure). To unravel their interactions in wildlife, it is thus essential to quantify their concurring drivers. Here, the relationship between blood contaminant residues (11 trace elements and 17 perfluoroalkyl substances) and nonlethally quantified gastrointestinal parasite loads was tested while accounting for intrinsic (sex, age, and mass) and extrinsic factors (trophic ecology inferred from stable isotope analyses and biologging) in European shags Phalacrocorax aristotelis. Shags had high mercury (range 0.65–3.21 μg g–1 wet weight, ww) and extremely high perfluorooctanoic acid (PFOA) and perfluorononanoic acid (PFNA) residues (3.46–53 and 4.48–44 ng g–1 ww, respectively). Males had higher concentrations of arsenic, mercury, PFOA, and PFNA than females, while the opposite was true for selenium, perfluorododecanoic acid (PFDoA), and perfluooctane sulfonic acid (PFOS). Individual parasite loads (Contracaecum rudolphii) were higher in males than in females. Females targeted pelagic-feeding prey, while males relied on both pelagic- and benthic-feeding organisms. Parasite loads were not related to trophic ecology in either sex, suggesting no substantial dietary co-exposure with contaminants. In females, parasite loads increased strongly with decreasing selenium:mercury molar ratios. Females may be more susceptible to the interactive effects of contaminants and parasites on physiology, with potential fitness consequences

Active travelling to school is not associated with increased total daily physical activity levels, or reduced obesity and cardiovascular/pulmonary health parameters in 10–12-year olds : a cross-sectional cohort study

Funding This work was supported by a grant from the Scottish Government Chief Scientist’s office grant CZH/4/458 b awarded to FFS and JRS. JRS was supported by a Wolfson merit award. Author information These authors contributed equally: Xueying Zhang, Nathan A. SmithPeer reviewedPostprin

The Sloan Digital Sky Survey Reverberation Mapping Project: Technical Overview

The Sloan Digital Sky Survey Reverberation Mapping project (SDSS-RM) is a dedicated multi-object RM experiment that has spectroscopically monitored a sample of 849 broad-line quasars in a single 7 deg$^2$ field with the SDSS-III BOSS spectrograph. The RM quasar sample is flux-limited to i_psf=21.7 mag, and covers a redshift range of 0.1<z<4.5. Optical spectroscopy was performed during 2014 Jan-Jul dark/grey time, with an average cadence of ~4 days, totaling more than 30 epochs. Supporting photometric monitoring in the g and i bands was conducted at multiple facilities including the CFHT and the Steward Observatory Bok telescopes in 2014, with a cadence of ~2 days and covering all lunar phases. The RM field (RA, DEC=14:14:49.00, +53:05:00.0) lies within the CFHT-LS W3 field, and coincides with the Pan-STARRS 1 (PS1) Medium Deep Field MD07, with three prior years of multi-band PS1 light curves. The SDSS-RM 6-month baseline program aims to detect time lags between the quasar continuum and broad line region (BLR) variability on timescales of up to several months (in the observed frame) for ~10% of the sample, and to anchor the time baseline for continued monitoring in the future to detect lags on longer timescales and at higher redshift. SDSS-RM is the first major program to systematically explore the potential of RM for broad-line quasars at z>0.3, and will investigate the prospects of RM with all major broad lines covered in optical spectroscopy. SDSS-RM will provide guidance on future multi-object RM campaigns on larger scales, and is aiming to deliver more than tens of BLR lag detections for a homogeneous sample of quasars. We describe the motivation, design and implementation of this program, and outline the science impact expected from the resulting data for RM and general quasar science.Comment: 25 pages, submitted to ApJS; project website at http://www.sdssrm.or

The New Generation Atlas of Quasar Spectral Energy Distributions from Radio to X-rays

We have produced the next generation of quasar spectral energy distributions (SEDs), essentially updating the work of Elvis et al. (1994) by using high-quality data obtained with several space and ground-based telescopes, including NASA's Great Observatories. We present an atlas of SEDs of 85 optically bright, non-blazar quasars over the electromagnetic spectrum from radio to X-rays. The heterogeneous sample includes 27 radio-quiet and 58 radio-loud quasars. Most objects have quasi-simultaneous ultraviolet-optical spectroscopic data, supplemented with some far-ultraviolet spectra, and more than half also have Spitzer mid-infrared IRS spectra. The X-ray spectral parameters are collected from the literature where available. The radio, far-infrared, and near-infrared photometric data are also obtained from either the literature or new observations. We construct composite spectral energy distributions for radio-loud and radio-quiet objects and compare these to those of Elvis et al., finding that ours have similar overall shapes, but our improved spectral resolution reveals more detailed features, especially in the mid and near-infrared.Comment: 46 pages, 10 figures, 10 tables, Accepted by ApJS. Composite SED data files for radio-loud and radio-quiet quasars (rlmsedMR.txt, rqmsedMR.txt) are included in the source (Other formats -> Source). Supplemental figures are not include

High-resolution aCGH and expression profiling identifies a novel genomic subtype of ER negative breast cancer.

BACKGROUND: The characterization of copy number alteration patterns in breast cancer requires high-resolution genome-wide profiling of a large panel of tumor specimens. To date, most genome-wide array comparative genomic hybridization studies have used tumor panels of relatively large tumor size and high Nottingham Prognostic Index (NPI) that are not as representative of breast cancer demographics. RESULTS: We performed an oligo-array-based high-resolution analysis of copy number alterations in 171 primary breast tumors of relatively small size and low NPI, which was therefore more representative of breast cancer demographics. Hierarchical clustering over the common regions of alteration identified a novel subtype of high-grade estrogen receptor (ER)-negative breast cancer, characterized by a low genomic instability index. We were able to validate the existence of this genomic subtype in one external breast cancer cohort. Using matched array expression data we also identified the genomic regions showing the strongest coordinate expression changes ('hotspots'). We show that several of these hotspots are located in the phosphatome, kinome and chromatinome, and harbor members of the 122-breast cancer CAN-list. Furthermore, we identify frequently amplified hotspots on 8q22.3 (EDD1, WDSOF1), 8q24.11-13 (THRAP6, DCC1, SQLE, SPG8) and 11q14.1 (NDUFC2, ALG8, USP35) associated with significantly worse prognosis. Amplification of any of these regions identified 37 samples with significantly worse overall survival (hazard ratio (HR) = 2.3 (1.3-1.4) p = 0.003) and time to distant metastasis (HR = 2.6 (1.4-5.1) p = 0.004) independently of NPI. CONCLUSION: We present strong evidence for the existence of a novel subtype of high-grade ER-negative tumors that is characterized by a low genomic instability index. We also provide a genome-wide list of common copy number alteration regions in breast cancer that show strong coordinate aberrant expression, and further identify novel frequently amplified regions that correlate with poor prognosis. Many of the genes associated with these regions represent likely novel oncogenes or tumor suppressors.RIGHTS : This article is licensed under the BioMed Central licence at http://www.biomedcentral.com/about/license which is similar to the 'Creative Commons Attribution Licence'. In brief you may : copy, distribute, and display the work; make derivative works; or make commercial use of the work - under the following conditions: the original author must be given credit; for any reuse or distribution, it must be made clear to others what the license terms of this work are

Ethanol reversal of tolerance to the respiratory depressant effects of morphine

Opioids are the most common drugs associated with unintentional drug overdose. Death results from respiratory depression. Prolonged use of opioids results in the development of tolerance but the degree of tolerance is thought to vary between different effects of the drugs. Many opioid addicts regularly consume alcohol (ethanol), and post-mortem analyses of opioid overdose deaths have revealed an inverse correlation between blood morphine and ethanol levels. In the present study, we determined whether ethanol reduced tolerance to the respiratory depressant effects of opioids. Mice were treated with opioids (morphine, methadone, or buprenorphine) for up to 6 days. Respiration was measured in freely moving animals breathing 5% CO(2) in air in plethysmograph chambers. Antinociception (analgesia) was measured as the latency to remove the tail from a thermal stimulus. Opioid tolerance was assessed by measuring the response to a challenge dose of morphine (10 mg/kg i.p.). Tolerance developed to the respiratory depressant effect of morphine but at a slower rate than tolerance to its antinociceptive effect. A low dose of ethanol (0.3 mg/kg) alone did not depress respiration but in prolonged morphine-treated animals respiratory depression was observed when ethanol was co-administered with the morphine challenge. Ethanol did not alter the brain levels of morphine. In contrast, in methadone- or buprenorphine-treated animals no respiratory depression was observed when ethanol was co-administered along with the morphine challenge. As heroin is converted to morphine in man, selective reversal of morphine tolerance by ethanol may be a contributory factor in heroin overdose deaths