Skip to main content

Home/ PHE - Resources/ Group items tagged citizen-science

Rss Feed Group items tagged

Filter: All | Bookmarks | Topics Simple Middle
Dennis OConnor

Test Your Assumptions With UC San Diego Citizen Science Online Tool | KPBS - 0 views

www.kpbs.org/...umptions-ucsd-citizen-science-

citizen-science

shared by Dennis OConnor on 08 Feb 19 - No Cached
  • Dennis OConnor on 08 Feb 19
     
    Click through to hear an 8 minute interview with Austin Durant, citizen experimenter and founder and chief fermentation officer, Fermenters Club and Vineet Pandey, lead designer and developer, Galileo. "Ever wonder if kombucha, the fermented tea drink, is actually good for you? Like many food and drinks touted as healthy, there hasn't been much scientific research to rely on and you'd just have to come to your own conclusions. Now a tool out of UC San Diego is empowering regular citizens to design experiments to test hypotheses and recruit participants, becoming scientists themselves. The tool is called Galileo and encourages participants to test their intuitions by asking questions like, can a vegan diet improve energy levels? Or does drinking coffee every day reduce the quality of sleep?"
Dennis OConnor

The Rise of the New Bio-Citizen | Wilson Center - 0 views

www.wilsoncenter.org/...the-rise-the-new-bio-citizen

DIY-research citizen-science ethics research

shared by Dennis OConnor on 10 Sep 19 - No Cached
  • Dennis OConnor on 10 Sep 19
     
    Camille Nebeker: And another that my colleague, Eleanor wrote entitled the Rise of the New Bio-Citizen speaks to the need for governance and safety considerations when doing DIY research.
Dennis OConnor

Coronavirus Will Change the World Permanently. Here's How. - POLITICO - 0 views

www.politico.com/...-society-analysis-covid-135579

future disruption covid

shared by Dennis OConnor on 28 Mar 20 - No Cached
  • Instead of asking, “Is there a reason to do this online?” we’ll be asking, “Is there any good reason to do this in person?”
  • saluting our doctors and nurses, genuflecting and saying, “Thank you for your service,”
  • give them guaranteed health benefits and corporate discounts
  • ...131 more annotations...
  • it will force us to reconsider who we are and what we value, and, in the long run, it could help us rediscover the better version of ourselves.
  • has the potential to break America out of the 50-plus year pattern of escalating political and cultural polarization
  • the “common enemy” scenario, in which people begin to look past their differences when faced with a shared external threat
  • second reason is the “political shock wave” scenario
  • enduring relational patterns often become more susceptible to change after some type of major shock destabilizes them
  • now is the time to begin to promote more constructive patterns in our cultural and political discourse. The time for change is clearly ripening.
  • The COVID-19 crisis
  • has already forced people back to accepting that expertise matters.
  • move them back toward the idea that government is a matter for serious people.
  • the end of our romance with market society and hyper-individualism.
  • We could turn toward authoritarianism
  • reorient our politics and make substantial new investments in public goods—for health, especially—and public services.
  • to allowing partial homeschooling or online learning for K-12 kids has been swept away by necessity.
  • the social order it helps support—will collapse if the government doesn’t guarantee income for the millions of workers who will lose their jobs in a major recession or depression
  • de-militarization of American patriotism and love of community will be one of the benefits to come out of this whole awful mess.
  • But how do an Easter people observe their holiest day if they cannot rejoice together on Easter morning?
  • How do Jews celebrate their deliverance from bondage when Passover Seders must take place on Zoom
  • Can Muslim families celebrate Ramadan if they cannot visit local mosques for Tarawih prayers
  • All faiths have dealt with the challenge of keeping faith alive under the adverse conditions of war or diaspora or persecution—but never all faiths at the same time.
  • Contemplative practices may gain popularity
  • One group of Americans has lived through a transformational epidemic in recent memory: gay men. Of course, HIV/AIDS
  • Plagues drive change.
  • awakened us to the need for the protection of marriage
  • People are finding new ways to connect and support each other in adversity
  • demand major changes in the health-care system
  • COVID-19 will sweep away many of the artificial barriers to moving more of our lives online
  • uptake on genuinely useful online tools has been slowed by powerful legacy players,
  • collaboration with overcautious bureaucrats
  • Medicare allowing billing for telemedicine was a long-overdue change
  • s was revisiting HIPAA to permit more medical providers to use the same tools the rest of us use every day to communicate, such as Skype, Facetime and email.
  • The resistance
  • we will be better able to see how our fates are linked.
  • near-impossible to put that genie back in the bottle in the fall
  • college
  • forcing massive changes in a sector that has been ripe for innovation for a long time.
  • Once companies sort out their remote work dance steps, it will be harder—and more expensive—to deny employees those options.
  • Yo-Yo Ma
  • Perhaps we can use our time with our devices to rethink the kinds of community we can create through them
  • This is a different life on the screen from disappearing into a video game or polishing one’s avatar.
  • breaking open a medium with human generosity and empathy
  • Not only alone together, but together alone.
  • The rise of telemedicine
  • Out of necessity, remote office visits could skyrocket in popularity as traditional-care settings are overwhelmed by the pandemic
  • they’ve been forced to make impossible choices among their families, their health and financial ruin.
  • This crisis should unleash widespread political support for Universal Family Care
  • single public federal fund that we all contribute to, that we all benefit from, that helps us take care of our families while we work, from child care and elder care to support for people with disabilities and paid family leave.
  • potlight on unmet needs of the growing older population
  • The reality of fragile supply chains for active pharmaceutical ingredients coupled with public outrage over patent abuses that limit the availability of new treatments has led to an emerging, bipartisan consensus that the public sector must take far more active and direct responsibility for the development and manufacture of medicines.
  • resilient government approach will replace our failed, 40-year experiment with market-based incentives
  • Science reigns again.
  • Truth and its most popular emissary, science, have been declining in credibility for more than a generation
  • Quickly, however, Americans are being reacquainted with scientific concepts like germ theory and exponential growth
  • Unlike with tobacco use or climate change, science doubters will be able to see the impacts of the coronavirus immediately
  • for the next 35 years, I think we can expect that public respect for expertise in public health and epidemics to be at least partially restored
  • Congress can finally go virtual.
  • We need Congress to continue working through this crisis, but given advice to limit gatherings to 10 people or fewer, meeting on the floor of the House of Representatives is not an especially wise option right now
  • nstead, this is a great time for congresspeople to return to their districts and start the process of virtual legislating—permanently
  • Lawmakers will be closer to the voters they represent
  • sensitive to local perspectives and issues
  • A virtual Congress is harder to lobby
  • Party conformity also might loosen with representatives remembering local loyalties over party ties.
  • Big government makes a comeback.
  • Not only will America need a massive dose of big government
  • we will need big, and wise, government more than ever in its aftermath.
  • The widely accepted idea that government is inherently bad won’t persist after coronavirus.
  • functioning government is crucial for a healthy society
  • most people are desperately hoping
  • a rebirth of the patriotic honor of working for the government.
  • the coronavirus crisis might sow the seeds of a new civic federalism, in which states and localities become centers of justice, solidarity and far-sighted democratic problem-solving.
  • we will see that some communities handled the crisis much better than others.
  • success came in states where government, civic and private-sector leaders joined their strengths together in a spirit of self-sacrifice for the common good.
  • The coronavirus is this century’s most urgent challenge to humanity.
  • a new sense of solidarity, citizens of states
  • The rules we’ve lived by won’t all apply
  • pandemic has revealed a simple truth:
  • many policies that our elected officials have long told us were impossible and impractical were eminently possible and practical all along.
  • student loans and medical debt
  • evictions were avoidable; the homeless could’ve been housed
  • Trump has already put a freeze on interest for federal student loans
  • Governor Andrew Cuomo has paused all medical and student debt owed to New York State
  • Democrats and Republicans are discussing suspending collection on—or outright canceling—student loans as part of a larger economic stimulus package
  • It’s clear that in a crisis, the rules don’t apply
  • an unprecedented opportunity to not just hit the pause button and temporarily ease the pain, but to permanently change the rules so that untold millions of people aren’t so vulnerable to begin with.
  • Revived trust in institutions.
  • oronavirus pandemic, one hopes, will jolt Americans into a realization that the institutions and values Donald Trump has spent his presidency assailing are essential to the functioning of a democracy—and to its ability to grapple effectively with a national crisis.
  • government institutions
  • need to be staffed with experts (not political loyalists),
  • decisions need to be made through a reasoned policy process and predicated on evidence-based science and historical and geopolitical knowledge
  • we need to return to multilateral diplomacy,
  • to the understanding that co-operation with allies—and adversaries, too—is especially necessary when it comes to dealing with global problems like climate change and viral pandemics.
  • t public trust is crucial to governance
  • 1918 flu pandemic
  • the main lesson from that catastrophe is that “those in authority must retain the public’s trust” and “the way to do that is to distort nothing, to put the best face on nothing, to try to manipulate no one.”
  • Expect a political uprising.
  • Occupy Wall Street 2.0, but this time much more massive and angrier.
  • Electronic voting goes mainstream.
  • how to allow for safe voting in the midst of a pandemic, the adoption of more advanced technology
  • To be clear, proven technologies now exist that offer mobile, at-home voting while still generating paper ballots.
  • This system is not an idea; it is a reality that has been used in more than 1,000 elections for nearly a decade by our overseas military and disabled voters.
  • hould be the new normal.
  • Election Day will become Election Month.
  • The change will come through expanded early voting and no-excuse mail-in balloting, effectively turning Election Day into Election Month
  • Once citizens experience the convenience of early voting and/or voting by mail, they won’t want to give it up.
  • . Some states, such as Washington, Oregon and Utah, already let everyone vote at home.
  • Voters already receive registration cards and elections guides by mail. Why not ballots?
  • First, every eligible voter should be mailed a ballot and a self-sealing return envelope with prepaid postage.
  • Elections administrators should receive extra resources to recruit younger poll workers, to ensure their and in-person voters’ health and safety, and to expand capacity to quickly and accurately process what will likely be an unprecedented volume of mail-in votes.
  • In the best-case scenario, the trauma of the pandemic will force society to accept restraints on mass consumer culture as a reasonable price to pay to defend ourselves against future contagions and climate disasters alike.
  • In the years ahead, however, expect to see more support from Democrats, Republicans, academics and diplomats for the notion that government has a much bigger role to play in creating adequate redundancy in supply chains—resilient even to trade shocks from allies. This will be a substantial reorientation from even the very recent past.
  • pressure on corporations to weigh the efficiency and costs/benefits of a globalized supply chain system against the robustness of a domestic-based supply chain.
  • other gap that has grown is between the top fifth and all the rest—and that gap will be exacerbated by this crisis.
  • In this crisis, most will earn steady incomes while having necessities delivered to their front doors.
  • other 80 percent of Americans lack that financial cushion.
  • will struggle
  • A hunger for diversion.
  • After the disastrous 1918-19 Spanish flu and the end of World War I, many Americans sought carefree entertainment, which the introduction of cars and the radio facilitated.
  • The economy quickly rebounded and flourished for about 10 years, until irrational investment tilted the United States and the world into the Great Depression.
  • human beings will respond with the same sense of relief and a search for community, relief from stress and pleasure.
  • Less communal dining—but maybe more cooking
  • many people will learn or relearn how to cook over the next weeks.
  • ikely there will be many fewer sit-down restaurants in Europe and the United States. We will be less communal at least for a while.
  • A revival of parks.
  • Urban parks—in which most major cities have made significant investments over the past decade—are big enough to accommodate both crowds and social distancing.
  • Society might come out of the pandemic valuing these big spaces even more,
  • A change in our understanding of ‘change.’
  • Americans have said goodbye to a society of frivolity and ceaseless activity in a flash
  • Our collective notions of the possible have changed already
  • The tyranny of habit no more.
  • Maybe, as in Camus’ time, it will take the dual specters of autocracy and disease to get us to listen to our common sense, our imaginations, our eccentricities—and not our programming.
  • and environmentally and physiologically devastating behaviors (including our favorites: driving cars, eating meat, burning electricity)
  • echarged commitment to a closer-to-the-bone worldview that recognizes we have a short time on earth
Dennis OConnor

ASMscience | Building Research Integrity and Capacity (BRIC): An Educational Initiative... - 0 views

www.asmscience.org/...jmbe.v17i1.1020

citizen-science Camille-Nebeker ethics

shared by Dennis OConnor on 22 Nov 19 - No Cached
  • Dennis OConnor on 22 Nov 19
     
    "While citizen science is gaining attention of late, for those of us involved in community-based public health research, community/citizen involvement in research has steadily increased over the past 50 years. Community Health Workers (CHWs), also known as Promotores de Salud in the Latino community, are critical to reaching underserved populations, where health disparities are more prevalent. CHWs/Promotores provide health education and services and may also assist with the development and implementation of community- and clinic-based research studies. Recognizing that CHWs typically have no formal academic training in research design or methods, and considering that rigor in research is critical to obtaining meaningful results, we designed instruction to fill this gap. We call this educational initiative "Building Research Integrity and Capacity" or BRIC. The BRIC training consists of eight modules that can be administered as a self-paced training or incorporated into in-person, professional development geared to a specific health intervention study. While we initially designed this culturally-grounded, applied ethics training for Latino/Hispanic community research facilitators, BRIC training modules have been adapted for and tested with non-Latino novice research facilitators. This paper describes the BRIC core content and instructional design process."
Dennis OConnor

Barbarians at the Gate: Consumer-Driven Health Data Commons and the Transformation of C... - 0 views

papers.ssrn.com/...papers.cfm

data sharing collective-creations

shared by Dennis OConnor on 28 Jul 18 - No Cached
  • Dennis OConnor on 28 Jul 18
     
    "Current research and privacy regulations, which were designed for clinical research and for small-data studies of the past, cannot support creation of the vast data resources that 21st-century science needs. These regulations enshrine data-holders (hospitals, insurers, and other entities that store people's data) as the prime movers in assembling large-scale data resources for scientific use and rely on mechanisms - such as de-identification of data and waivers of individual consent - that are unworkable going forward. They shower individuals with unwanted, paternalistic protections - such as barriers to access to their own research results - while denying them a voice in what will be done with their data."
Dennis OConnor

Sharon Terry: Science didn't understand my kids' rare disease until I decided to study ... - 0 views

www.ted.com/...se_until_i_decided_to_study_it

shared by Dennis OConnor on 23 Jan 19 - No Cached
  • Dennis OConnor on 23 Jan 19
     
    "Meet Sharon Terry, a former college chaplain and stay-at-home mom who took the medical research world by storm when her two young children were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). In this knockout talk, Terry explains how she and her husband became citizen scientists, working midnight shifts at the lab to find the gene behind PXE and establishing mandates that require researchers to share biological samples and work together."
Dennis OConnor

About Knight Lab - American Gut - 0 views

americangut.org/about

ecosystem

shared by Dennis OConnor on 29 May 18 - No Cached
  • The American Gut is based out of Rob Knight’s lab at the University of California, San Diego-meaning all samples provided by American Gut citizen science participants are processed by technicians working in the Knight lab.  The Knight lab is one of the largest microbiome research labs in the world, processing samples from hundreds of projects at a rate of ~100,000 per year. Notably, the protocols used by the lab to process these samples have been extensively tested and benchmarked and are freely available from the Earth Microbiome Project’s website.
Dennis OConnor

Crohnology - 0 views

crohnology.com

citizen-science DIY-research

shared by Dennis OConnor on 10 Sep 19 - No Cached
  • Dennis OConnor on 10 Sep 19
     
    "I started Crohnology because after living for Crohn's for 14 years, I realized that the data that I was gathering outside the doctor's office was just as important as, if not more than, what I was learning inside. Since my diagnosis at age 12, I have had a dozen major flare ups of the disease. I found that, for me, diets and supplements, stress reduction and mental relaxation, and exercise help. I heard many people on the internet claim that they had found the magic bullet, but I thought it was irresponsible to be so confident. Just because these things worked for me, I wasn't about to claim that they work for everybody. Instead, I decided to build a patient-powered research network that would allow patients everywhere to be contributing their own treatment experimentation in a way that could be aggregated for us to learn what actually works for whom. - Sean Ahrens"
Dennis OConnor

The Design Lab - UC San Diego - 0 views

designlab.ucsd.edu

design-thinking ecosystem

shared by Dennis OConnor on 29 May 18 - No Cached
  • Dennis OConnor on 29 May 18
     
    he UC San Diego Design Lab works on major societal issues, such as large-scale education, automation, healthcare, visualization of complex phenomena and data, social interactions, citizen science, and the ethical issues that are of ever-increasing importance.
Dennis OConnor

[CSA Webinar] Approaching Informed Consent in Citizen Science: Legal and Ethical Issues - 1 views

citizenscience.member365.com/...1

ethics informed-consent Camille-Nebeker

shared by Dennis OConnor on 20 Nov 19 - No Cached
  • Dennis OConnor on 20 Nov 19
     
    "  Presented by the Law and Policy Working Group and Ethics Working Group Date: Friday, November 22, 2019, from 1:00 PM to 2:15 PM EST Presented by the Law and Policy Working Group and Ethics Working Group Date: Friday, November 22, 2019, from 1:00 PM to 2:15 PM EST"
Dennis OConnor

Summer Webinar Series - Citizen Science Association - 0 views

www.citizenscience.org/...summer-webinar-series

shared by Dennis OConnor on 30 May 19 - No Cached
  • Dennis OConnor on 30 May 19
     
    The link below shows 3 upcoming webinars that may be of interest. The one on June 20 will feature Camille Nebeker and Gary Wolf speaking about the ethical dimensions of participant-lead research. The webinars are free, but please note that the start times are given in EDT. So if you plan to register for their workshop, it will be at 10:00 am that day.
Dennis OConnor

Covid-19 "long haulers" are organizing online to study themselves | MIT Technology Review - 0 views

www.technologyreview.com/...ing-online-to-study-themselves

covid research citizen-science self-study

shared by Dennis OConnor on 21 Aug 20 - No Cached
  • Dennis OConnor on 21 Aug 20
     
    "Slack groups and social media are connecting people who've never fully recovered from coronavirus to collect data on their condition."
1 - 14 of 14
Showing 20▼ items per page