Coop’s Citizen Sci Scoop: Jefferson’s Legacy Cultivates a Nation of Amateurs

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On the original Independence Day, founding father Thomas Jefferson understood the connection between knowledge and freedom. Now, 238 years later, this week’s round-up of scientific papers relying on citizen science includes discoveries about migratory birds, new planets, snakes, and blackbirds – discoveries that would not have been possible without the help of amateurs, hobbyists, and enthusiasts. To be clear, “citizen” in the context of Independence Day refers to the rights and responsibilities that some have to participate in governance. In the context of citizen science, “citizen” refers to the rights and responsibilities that every person – amateur and professional – has to participate in the development of new knowledge and a shared understanding of the world.

Roundup_july4

Below is my first blog post about citizen science from Independence Day 2012 at Scientific American blogs. It is followed by a roundup of this week’s discoveries made possible thanks to citizen science.

Life, Liberty, and the Pursuit of Data

Ever since Jefferson penned the Declaration of Independence, we celebrate with a day of relaxation, barbecues, and the pageantry of dazzling fireworks. Little known is that in 1776, Jefferson had a second great vision that shaped the United States. Like the Declaration, his second vision also relied on citizens relishing civic duty and claiming their right to be informed and educated in order to self-govern and curb corruption, privilege, and aristocracy. The Jeffersonian plan was to provide a thermometer to a deputy in every county in Virginia with instructions to log twice-daily observations of temperature and wind direction. This founding father envisioned what is nowadays called citizen science.

In the legacy of this tradition, in every state of the union, hundreds of thousands of people will be scientifically engaged this summer: observing, measuring, analyzing, checking. Don’t be alarmed if your seemingly ordinary neighbors chronicle the sequence of flower blooms, measure gravestones, or count the pulsing of fireflies. Sharing observations is a collective scientific effort. Across all age levels and segments of society, citizen science is undergoing a revival as an American leisure-time tradition that was born with our Independence.

The Revolutionary War temporarily held up Jefferson’s systematic statewide plan. But from 1776 to 1816, which includes his two terms as President, Jefferson and many of his recruits (including Lewis and Clark) kept a near complete series of weather observations. Those founding our independent nation had a friendly rivalry with Europeans about who lived on the better continent. But, as relative newcomers to the New World, they had little data to support their claims of superiority. It was Jefferson’s patriotic chip on his shoulder, in a time before meteorologists and climatologists, which caused him to enlist citizens in data collection. In particular, weather records were a key part of his efforts to dash the theory of degeneracy: the idea that the temperature and humidity of New World produced animals that were smaller, weaker, and just plain inferior to their European counterparts. Jefferson used weather data, which included his 5 years in France, to show that America had a higher sunny-to-cloudy-day ratio than Europe.

Jefferson’s plan was not formalized until 1870, when President Grant created a new federal agency and assigned it the responsibility to coordinate a volunteer weather observer program. This is today’s National Weather Service’s Cooperative Weather Observer Network which draws about one million volunteer-hours annually at 12,000 sites across all 50 states.

When poor weather forecasting led to disaster in the foothills of the Rockies in 1998, Jefferson’s tradition expanded again with the formation of the Community Collaborative Rain Snow & Hail Network (CoCoRaSH). Radar (Radio Detection and Ranging) can estimate rainfall over large areas, but precipitation is highly localized. It can rain, snow, or hail on one side of the street and not the other. Nothing high-tech in the sky can beat a gauge on the ground. Now meteorologists, claims adjusters, attorneys, construction businesses, utility companies, mosquito control experts, farmers, and urban planners use the publicly accessible, fine-scale data from CoCoRaSH.

In the 21st Century, Jefferson’s legacy intersected with the Internet and mobile phones. The result has been a proliferation far beyond what he ever conceived. Instead of hopping a stagecoach to share observations with friends, with a few keystrokes observations are shared globally and archived in perpetuity. Citizen science is now a global hobby, connecting people and their real-world leisure observations to virtual databases.

People count butterflies in abandoned fields, tally washed-up garbage on beaches, record bird species at backyard feeders, and spend hours sitting at their computers classifying galaxy after galaxy (there are hundreds of thousands of them). Stalwart science militia called Invaders of Texas scour the countryside, eyes peeled for possible invasive species that may threaten the environment or economy, be they plant, bird, or mollusk. In London, the Bronx, and San Francisco, people use smartphone apps to document noise pollution, then direct local changes in truck traffic routes. North of the Arctic Circle, Inuit measure ice thickness. In the Himalayan high peaks, Nepalese villagers record snow leopard sightings and tracks.

Scientific knowledge is now widely co-produced through collaborations between scientists and society. Citizen science, with millions of hours of volunteer work, can stretch tight budgets, and collectively reveal large-scale patterns that scientists could never discover alone.

Citizen science gives people an unselfish, guilt-free reason to take a break, go outside, and slow down enough to observe their world. In return they gain discoveries, large and small, that they never forget. These activities may alter their lives and shape how participants view themselves, their environments and communities.

Science-as-hobby builds social capital, the properties of trust, norms, and personal connections that enable communities to thrive.

Without public participation, science can appear as a quagmire of jargon and uncertainty. With public participation, science encourages people to retain the child’s pleasure of wonder and enchantment in understanding our world. Another reason that Jefferson wanted weather data was to develop a theory of climate, but his inspiration for it was a deep-seated love of the seasons. On weather collection, Jefferson wrote “Climate is one of the sources of the greatest sensual enjoyment.”

Co-producing knowledge can bring political agency. Hobbyists who engage in science have the ability to enter public discourse, with their opinions and their data, when it really matters: when too many of our kids have asthma, when our quality of water is at risk, and when we want a future with sustainable energy.

This Fourth of July, make your leisure matter. Discover a ladybug, tag whale songs online, or monitor a local stream. Collaborate and feel a newfound capacity to influence decisions. Independence means we don’t leave governing solely to career politicians; likewise, we shouldn’t leave knowledge production solely in the hands of professional scientists. We have two intertwined legacies to protect—democracy and citizen science. Celebrate Jefferson’s other enduring vision: become a citizen scientist.

~

Here’s a weekly round-up of some recent discoveries made possible thanks to citizen science:

(1) LaSort et al. 2014. The role of urban and agricultural areas during avian migration: an assessment of within-year temporal turnover. Global Ecology and Biogeography.

(2) Schmitt et al. 2014. Planet Hunters. VI. An independent characterization of KOI-351 and several long-period planet candidates from the Kepler Archival Data. The Astronomical Journal.

(3) Rose and Todd. 2014. Projecting invasion risk of non-native watersnakes (Nerodia fasciata and Nerodia sipedon) in the Western United States. PLoS one

(4) Thesis: Rusty Blackbird (Euphagus carolinus) fall migratory habitat dynamics in Missouri. Truman State University, 2014.

photo credits: Thomas Jefferson by Rembrandt Peale, Jeffersonian rain gauge by Kleran, Fireworks by Agiorgio.

 

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Exploring a Culture of Health: Detecting Signals of Wellbeing

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This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.

Imagine if everyday technology could transform how we manage our health and wellbeing? What if your phone could alert your doctor to a change in your behavior? Or what if grandma’s stove could tell you she is already up and about in the morning? It sounds complicated but as it turns out, it might simply be a matter of tapping into the data generated from everyday devices. Two independent groups in California are doing just this.

Using Mobile Technology to Help Youths with Mental Illness

At UC Davis behavioral scientists with the Early Diagnosis and Preventive Treatment (EDAPT) Clinic are embarking on a yearlong project to study whether mobile technology can improve treatment for young people who are in the early stages of psychotic illness. The EDAPT group has teamed up with Ginger.io a health data start-up to assess “users’ social, physical and mental health status”[1]. Through an app, users can actively input their daily symptoms, medication adherence, mood, and how they are coping, while information on their movements and daily social contacts, such as the number of incoming telephone calls and text messages, is gathered in the background. All of this data provides a patient and his or her clinical team with a finer resolution of that patient’s health profile.


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Coop’s Citizen Sci Scoop: Roundup of recent discoveries

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weekly roundup June 27

Continuing the tradition of thanking citizen science for new understanding of the natural world, below is a list of some of the publications from the last two weeks that relied on citizen science.  The topics include beach debris, red foxes, traffic noise, and lady beetles. Also, Ornithology students are learning to use data from citizen science to address their research questions, and this roundup includes three student theses: one on Canada geese, another on Golden Eagles, and the third on feeder birds.

(1) Beach debris

Hong et al. Quantities, composition, and sources of beach debris in Korea from the results of nationwide monitoring. Marine Pollution Bulletin.

(2) Red foxes

Scott et al. Changes in the distribution of red foxes (Vulpes vulpes) in urban areas in Great Britain: findings and limitations of a media-driven nationwide survey. PLoSONE

(3) Traffic noise

Leao et al. 2Loud? Community mapping of exposure to traffic noise with mobile phones. Environ Monitoring & Assessment.

(4) Lady beetles

Losey et al. 2014. Lady beetles in New York: insidious invasions, erstwhile extirpations, and recent rediscoveries. Northeastern Naturalist.

(5) Canada Geese

Thesis: Ronke. Survival, abundance, and geographic distribution of temperate-nesting Canada geese (Branta Canadensis) in Arkansas.

(6) Golden Eagle

Thesis: Dennhardt. Modeling migration and citizen-science data to estimate Golden Eagle abundance in Eastern North America. West Virginia University.

(7) Feeder birds

Thesis: Sutcliffe. 2014. Insights from Project FeederWatch: Changes in the abundance and occurrence of birds in New Hampshire over the past 24 years. University of New Hampshire.

This is just a sample of citizen science contributions published this week. Help me fill in the blanks by sending links of more papers reporting the results of research that relied on citizen science. Send to me via twitter @CoopSciScoop or put in the comments below.

Researchers also published a citizen science data set on the Common Gull in Alaska:

Huettmann and Spangler. Opportunistic survey data of the Common Gull (Larus canus) and other detections in an urban environment, downtown Fairbanks, interior Alaska during mid-May 2014.

Of note, a report by the European Union about Citizen Science and Smart Cities is out.

Finally, check out this excellent peek into the history of crowdsourcing for science from an unexpected meteor storm in 1833 (with more than 72,000 meteors per hour).

Littmann and Suomela. 2014. Crowdsourcing, the great meteor storm of 1833, and the founding of meteor science. Endeavor.

 

Denison_Olmsted_by_Magnus_Manske

 

photo credits: Canada geese by Dcoeztee, Golden Eagle by Chuck Abbe, Feeder birds illustration by JL Hirten, Fox by Peter Trimming, and Denison Olmsted by Magnus Manske.

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See a Seahorse, Save a Seahorse

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Citizen scientists can use an iPhone app or online tool to log seahorse sightings to help seahorse conservation.

Weedy pygmy seahorse.  (Hippocampus pontohi)

Weedy pygmy seahorse (Hippocampus pontohi)

With the head of a horse, the tail of a monkey, and the belly of a kangaroo, seahorses look almost like mythical creatures, and their unique abilities make them no less fantastical. Seahorses have eyes that operate independently of one another, don skin that changes color, and exhibit a reversal of gender roles when it comes to pregnancy. Unfortunately, these interesting fish (seahorses are indeed fish!) are a threatened species as a consequence of habitat destruction and overexploitation. One of the challenges seahorses conservationists face is the lack of information on the 48 or so different varieties of seahorses, their populations and where exactly in the world’s oceans they live. Through Project iSeahorse, an online citizen science project with an accompanying iPhone app, users can turn their vacation seahorse sightings into important data for conservation efforts.

“iSeahorse sightings have already increased our understanding of where seahorses live,” says Tyler Stiem, communications manager of Project Seahorse, the marine conservation organization that runs iSeahorse. “Several species have been found by citizen scientists where they were either thought to be extremely rare or not even exist based on published literature. Knowing where a species lives is the first key to protecting its populations.” Just last month, two divers spotted a lined seahorse in Nova Scotia and used iSeahorse to report this rare occurrence in Canadian waters.

iSeahorse app

iSeahorse app

Users can create a simple account with iSeahorse and log in to add seahorse observations. The project asks for information regarding the type of seahorse encountered, when and where the sighting occurred, and the habitat it was found in. Users can also upload any photos taken to help identify the species observed. The iPhone app is also a great educational tool adorned with beautiful photos for users to learn more about the varieties of seahorses and their tell-tale characteristics. For example, the weedy pygmy seahorse (Hippocampus pontohi; top image) found in Indonesian waters is a mere half-inch in length whereas the pot-bellied seahorse (Hippocampus abdominalis) can grow up to over a foot tall and has a protruding tummy, as its name suggests.

Conservationists recognize seahorses as a flagship species–a species that incites public interest to understand and protect an ecosystem. Likely due to their cute, cartoon-like appearances and quirky lifestyles, seahorses can be used to attract attention to marine environments in jeopardy that might otherwise be ignored. ”Flagship species are also a surrogate measure of the health of their ecosystem, as a healthy ecosystem will harbor healthy populations,” Stiem explains. “If high levels of pollution or habitat degradation occur, seahorses will not survive. Therefore healthy seahorse populations mean healthy coral reefs, mangroves, and seagrass beds, all of which are important components of coastal ecosystems worldwide.” In addition, scientists perceive seahorses as a lens into better understanding of reproductive biology, since males uniquely carry offspring through the gestation period, and this poses another case for protecting the oceans’ biodiversity.

Project Seahorse also hopes to raise environmental awareness through their citizen science project and encourage practices that help protect the earth’s marine ecosystems. Seahorses are often exploited for their use in traditional medicines and as souvenirs.  In addition, shrimp farming and trawling affect the seahorse population and contribute to habitat destruction. According to data from Project Seahorse, every year approximately 2.2 million seahorses are caught in trawl nets, and one pound of shrimp procured for human consumption reflects ten pounds of other marine organisms unintentionally ensnared. The more participation projects like iSeahorse gain, the better chance that legislation can be drafted to promote better harvesting practices to protect marine life.

So if you’re headed for a beach vacation this summer, consider downloading the iPhone app or creating an iSeahorse account to log seahorse sightings that you encounter!

Resources: Project Seahorse

Images: Top image courtesy of Wendy Hoevenaars/Guylian Seahorses of the World; bottom image courtesy of Sheetal R. Modi.

This post originally appeared on the SciStarter blog.


Sheetal R. Modi does research for a biotech start-up in the San Francisco Bay Area. She has a PhD in Biomedical Engineering where she focused on the evolution of antibiotic resistance in bacteria. When she’s not tinkering with microbes, she enjoys science communication and being outside.

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Exploring a Culture of Health: Building Resilience to Undo the Effects of Childhood Trauma

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Working with children to undo the effects of childhood trauma

Working with children to undo the effects of childhood trauma

This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.

Early life experiences lay the foundation for mental development as well as general health and well-being. Having a loving family environment, exposure to healthy habits such as nutritious eating or exercise and socioeconomic stability are good indicators for healthy psychological and physiological development. Not surprising news. The reality, however, is that not all children grow up in an environment that checks all of these boxes. What happens to kids who face difficulties like poverty or neglect early in life?

Unfortunately it is not good. Neurobiological and social research show that adverse childhood experiences (ACEs) increase the risk of developing mental and physical health issues. ACEs include being abused as a child or exposed to a parent’s   violence or drug abuse, or loss of a parent through divorce, mental illness or incarceration. These “stressful environments impact children’s emotional development, mental health, cognition and their ability to learn,” states Dr. Darcy Lowell of Child First, a Connecticut-based home-visit program that works with at risk children between the prenatal period and the age of five.

“Across the general population, one in four children will experience a significantly a traumatic incident before they are four. Fifty percent of those children will experience that three or four times,” explains Janine Hron C.E.O. of the Crittenton Children’s Center in Kansas City, Missouri, home to the trauma intervention program Head Start-Trauma Smart.

The statistics are staggering. So what can be done?

“When children are exposed to trauma, it stops their brain from progressing along the normal track,” says Hron. “The good news is that science has informed us that the brain is adaptable and is capable of healing.” The challenge is determining how to nurture this healing process. Using different models, Child First and Head Start-Trauma Smart, both Robert Wood Johnson Foundation (RWJF) supported programs, are doing just that.


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Coop’s Citizen Sci Scoop: What would Thoreau do?

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thoreau_series

Last week I was thinking about Matthew Maury, and his historical pursuits in citizen science, because the artist-time traveler Benjamin Andrew brought the father of oceanography as a companion on some trips through history (his exhibit is at the Arlington Art Museum until the end of June). This coincided with Clavero and Revilla, in a correspondence published in the journal Nature last week, making the case for the importance of historical ecology as told by old citizen science data. Old compilations of natural history observations certainly have flaws and omissions, but they are proving to be the closest way that we can travel through time.

What is meant by “old citizen science”?

The answer differs by country.

With the relatively short history of the United States, a first thought of “old citizen science” might be the diaries of Henry David Thoreau. Thoreau was in touch with Nature’s pulse. When he recorded flowering times, we was like a participant in Project Budburst long before the project existed. Thoreau diligently noticed and recorded the flowering dates for over 500 plant species in Concord between 1852 and 1858. In 2008, researchers used these in analyses of plant phenology and climate change.

Thoreau could not have known that his efforts, combined with observations150 years later, would show that St. John’s wort and high-bush blueberry are highly responsive to changes in climate, or that Concord plants are flowering 3.3. days earlier for each 1 C increase in spring temperatures. He just liked to notice things bloom and felt that, as he put it, “life emits a fragrance like flowers.”

“Old citizen science” is much older if we look at observations in China, at which point the lines between citizen science and historical ecology blur together. For instance, a variety of Chinese historic records contain observations relevant to biodiversity. Some historical accounts that include natural history are The Historical Records (~3000-122 BC), the Chronicles of the Han Dynasty (206 BC to 23 AD), Twenty Four Histories (2550 BC to 1644 AD), and Zizhitongjian (403BC to 959 AD).

Earlier this year these sources were used in the longest-term ecological study that I’ve ever seen. Li and colleagues showed range contractions that spanned over two millennia in the distribution of the Asian elephant (Elephas maximus), the giant panda (Ailuropoda melanoleuca), and three species of rhinoceroses: the two-horned Sumatran rhino (Dicerorhinus sumatrensis), the Indian rhinoceros (Rhinoceros unicornis) and the one-horned Java rhino (R. sondaicus) (the authors treated the rhinos as one group since these species were not clearly distinguished in the historical records). Li and colleagues concluded that human-dominated landscapes are preventing these species from now expanding their ranges, which would otherwise occur given new weather patterns.

Let’s look more closely between these extremes.  Clavero, Rivella, and their colleagues use “old citizen science” by drawing on observations from the 1500s and 1800s to better understand the historical context of species distributions across contemporary ecosystems and landscapes.

There are two major historic data collection efforts that were citizen-science style that Clavero has used in Spain.

The Relaciones topográficas is a standardized geographic account that covers the years 1574 to 1582. It was created through a citizen science style survey during the reign of Felipe II (1556-1598). The survey was a series of questionnaires (interrogatorios) sent to villages. The instructions specified that the questions should be answered by at least two inhabitants of the village and these individuals should be “intelligent and inquisitive.” (In almost all villages, the survey was answered verbally to scribes sent by Felipe II). The questions were about local history, geography, population, social organization, religion, health, crops, livestock, forests, game animals, and aquatic systems and fish. This resulted in more than 4,500 records of over 100 wild plant and 90 wild animal species from over 600 villages.

cover of Madoz dictionary_ portada tomoII

The 19th Century Dictionarios was edited by Pascual Madoz into 16 volumes based on observations from more than 1,000 contributors between 1845 and 1850. Madoz found contributors who today would likely be participants in iNaturalist. Not claiming a specific research agenda, iNaturalist is a platform to share, and learn from, observations of nature. It is a kind of citizen science that assumes documenting is better than not documenting. As Madoz explained in the prologue to volume 1, he knew that he could not compile all the needed information himself, nor hire people to help, so he decided to “excite the zeal of illustrated people who (…) would like to cooperate, without any selfish interest, guided exclusively by the love to sciences”  (pg. 8). There was no official financial support to publish the Dictionarios. Instead, Madoz accumulated 8,000 pre-publication subscriptions in a crowdfunding-like campaign.

The contemporary source of biodiversity information is the Spanish national biodiversity Inventory, administered by the Spanish Ministry of Agriculture, Food, and Environment.

In a 2013 paper, Clavero and Delibes used these data sources to inform conservation priorities related to lynx in Spain. They compiled 151 records between 1572 and 1897. The observations fell clearly in the north or south, which the authors believe correspond to observations of the Iberian lynx (Lynx pardinus) in the south and the Eurasian lynx (Lynx lynx) in the north. Since the historical records from South  correspond to Iberian lynx range in the 1950s, this region was likely the core distribution area for centuries. They recommend setting conservation priorities based on 1950s range. Old data have rarely been used in conservation strategies this way.

In a paper earlier this year, Clavero & Villera further argued for the necessity of historical ecology to fully understanding contemporary ecosystems and landscapes, particularly with regard to distinguishing native and non-native species. People have been moving animals around for eons. Without historic data, it is hard to know whether a species native to an area. When we lose information about historical ranges, we may face a conservation problem termed shifting baseline syndrome.

The shifting baseline syndrome is caused by failing to notice that the reference scenario guiding management goals is not a pristine state. As Clavero puts it, “We want ecosystems to be as we have known them recently, not necessarily as they naturally were longer ago. Knowing what to define as “natural” in an ever-changing system is difficult, or perhaps impossible.”

Clavero & Villero used historic citizen science to offer different baseline options for three aquatic species in the Iberian Peninsual since the 16th century: tench, common carp, and white-clawed crayfish.

white-clawed_crayfish_by_Miguel_Clavero

Earlier this year in Conservation Biology, Clavero looked more critically at the baseline for white-clawed crayfish. The IUNC Red List categorizes the white-clawed crayfish as endangered.  Consequently, the Spanish government has recovery plans based on the reference system of the late 1960s when the range was at its maximum. The white-clawed crayfish started spreading in Spain 2.5 centuries ago. Now their populations are low because other introduced crayfish have brought disease. Are conservation efforts using the best reference system?

Spain has a similar situation with European mink. Globally, they are critically endangered, but neither the European mink nor the feral American mink are native to Spain. Why protect one and try to eradicate the other?

Once species have assimilated, functionally and culturally into the country, should they be the reference system? Given enough time, will all invaders eventually be considered native?

Humans have strongly affected animal distributions, particularly since the dawn of agriculture about 10,000 years ago. Ecosystems are dynamic. Selecting a baseline is a technical and philosophical question. With every generation we lose information, and so rescuing fine-grained and large-scale biodiversity data from the past can help.

Humanity has a long history of making observation of nature — from cave paintings to diaries to protocol-driven projects. As Clavero and others have shown, the next best thing to time travel are historical records. These lessons speak to the unanticipated value of citizen science. There are many instances were well-kept observations, perhaps thousands of years later, are re-purposed for important discoveries.

Photo credit: Thoreau with flowers, Thoreau decides to take a selfie (Derya Akkaynak), me photo-bombing Thoreau’s selfie, white-clawed crayfish (Miguel Clavero)

~~~~~

While appreciating the past, let’s also appreciate new discoveries from citizen science during the past week.  The roundup includes papers on beetles, jellyfish, galaxies, and dragonflies:

(1) Desurmont and Agrawal. Do plant defenses predict damage by an invasive herbivore? A comparative study of the viburnum leaf beetle.  Ecological Applications 24:759-769.

(2) Pikesley et al. Cnidaria in UK coastal waters: description of spatio-temporal patterns and inter-annual variation. J Marine Bio Assoc of UK

(3) Manzer and De Robertis. The effects of local environment on active galactic nuclei. Astro J

(4) Gillingham et al. High abundances of species in protected areas in parts of their geographic distributions colonised during a recent period of climate change. Conservation Letters.

 

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Exploring a Culture of Health: Connecting Patients and Researchers to Enhance Discovery

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This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.

Nicholas Volker aged six, from Minona Wisconsin had suffered from a highly inflamed intestine since he could walk 1. The strange disease that his doctors could not diagnose required no less than 100 surgeries. Dr. Alan Meyer, Nic’s doctor and a pediatrician at Children’s Hospital of Wisconsin eventually decided to try a radical form of diagnosis—DNA sequencing. What Dr Meyer and his team found was a rare, ‘undiagnosable’ disease—one that could only be treated by a bone marrow transplant from umbilical cord blood.

Though he was eventually treated, Nic, his parents and his doctors had gone through a long and painful ordeal in searching for the cause of his disease. Nic could have experienced a far easier path to his eventual treatment if we had a better understanding of our genome and how it relates to diseases. While many research efforts are focused on deciphering our genome, accelerating basic research and its translation to the clinic requires an integrated effort on a much larger scale. Importantly this effort should involve the participation and more meaningful collaboration of citizens and patients in research.

“People who live with a disease every day are untapped experts. Allowing their data and experience to inform the medical discovery process will increase the likelihood that the resulting discoveries and clinical encounters give them the opportunity to live healthier lives, and will help us build a national Culture of Health,” says Paul Tarini, a Senior Program Officer at the Robert Wood Johnson Foundation (RWJF) which supports transformative ideas through its Culture of Health initiative.

With support from RWJF, several efforts are underway to explore how data, insights, and knowledge contributed by patients can further medical discovery and improve health care.

Partnering on research

BRIDGE, operated by Sage Bionetworks, is an online platform where patients can track their health data and work together with researchers and funders as virtual teams on research. “What this means,” says Thea Norman, director of Strategic Development at BRIDGE, “is that for someone who is interested in becoming more involved in medical research as a patient—someone who has insight into a disease they are suffering from, and who is motivated to understand what they are suffering from—BRIDGE offers significantly more opportunity than the traditional method of research.”

Open Humans: An online platform that connects participants and researchers

Open Humans: An online platform that connects participants and researchers

Whether collected on an app, through survey or via a personal online journal, BRIDGE offers citizens a place to store their data in whatever form they record personally. This allows researchers and other patients to potentially find correlations between some of the data collected and a journal entry that provides critical information.

The added benefit for people who contribute data? “Early insights and perhaps a shorter, faster path to new therapies,” says Tarini.

A number of research projects will be piloted on BRIDGE in the coming year—all of them will engage patients as partners in the process.

Sharing data

Open Humans is an online platform that connects research participants willing to publicly share data about themselves with researchers interested in using and adding to that public data. In the pilot phase, Open Humans will work with the Harvard Personal Genome ProjectAmerican Gut and Flu Near You GoViral—all studies that return data to participants and enable them to share it. Eventually, scientists will be able to work with participants to create additional data.

“When research studies agree to share data with participants, something incredible is possible: people have the ability to aggregate and share that data, to be combined with other data and re-used in powerful new ways,” says Jason Bobe, program director of Open Humans. “More sophisticated research questions and new insights become possible when data can be integrated from multiple research studies: does genetic background impact flu resistance? Does the community of microbes in the gut influence flu susceptibility?”

Improving treatments and clinical practice

PatientsLikeMe’s Open Research Exchange (ORE) is another platform that gives both researchers and patients a space to work together. The goal of the Open Research Exchange is to identify health outcomes that are meaningful to patients and develop measures that assess treatments or clinical practices against these outcomes.

Open Research Exchange: Patients and researchers working together to develop meaningful health outcomes

Open Research Exchange: Patients and researchers working together to develop meaningful health outcomes

Paul Wicks, the Vice President of Innovation at PatientsLikeMe and leader of the ORE initiative explains, “Many health outcomes used today to assess the efficacy of new treatments or clinical practices were developed from the perspective of the health system—what can we measure objectively, such as a blood test, or what costs the most, such as an emergency room visit. But what matters to patients is the impact of living with disease – the symptoms and side effects, the fact that they can’t work, or that they feel stigmatized.”

A classic example of this is Alzheimer’s disease. Many trials use a test called the ‘mini mental state examination,’ which asks patients to remember simple words, or say who the president is, or cite today’s date. As Wicks notes, “Caregivers don’t bring Grandpa to the doctor because he can’t remember who the president is. They bring him because he can’t remember who Grandma is.”

 Are you participating in the Harvard Personal Genome Project or American Gut and thinking about joining the Open Humans network? Interested in sharing your data and collaborating on research through BRIDGE? Want to help make health care more patient-centered through the Open Research Exchange? Start a conversation in the comments below about what would incentivize you to use these platforms and participate in collaborative research to build a culture of health.

 

If you want to do more, you can always contribute to other health related citizen science projects below that are on SciStarter, an online hotspot for citizen science!

Human Memone Project

DIYGenomics

 

References

1. A story of faith and one tough boy” Dec 25, 2010 Milwaukee Journal Sentinel http://www.jsonline.com/news/opinion/112397804.html

Image credits

Logos for Open Humans and the projects that contribute to it were obtained from openhumans.org. The Open Research Exchangelogo was obtained from openresearchexchange.org

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Ahoy, Citizen Scientists!

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We’ve waded through our database and come up with a boatload of marine-themed citizen science projects! Dive in!

Also, don’t forget to stop by DISCOVER Magazine and SciStarter’s online Citizen Science Salon; look for our new collaboration in the pages of Discover; or listen to beautifully produced citizen science stories from our partners at WHYY radio!
 

MyOSD-Ocean Sampling Day
On June 21st, during the summer solstice (the longest day in the northern hemisphere) join a local marine research team to collect data for an open-access data set to be used by marine scientists and others. Get started!

 

iSeahorse
Whether you’re a diver, a fisher, a scientist, a seahorse enthusiast, or just on a beach holiday, you can help improve understanding of these animals by sharing your photos of seahorses!  Get started!

 

Horseshoe Crabs as Homes
Horseshoe crabs play a key role in coastal ecosystems but they might also serve as substrate for many invertebrate species. Let’s find out what lives on Horseshoe crabs.Take and share pictures when you see them on the beach and aid research in the process!  Get started!

 

Secchi App
The phytoplankton underpin the marine food chain, so we need to know a lot about them. To participate in this project to advance research about them, you’ll need to build a Secchi Disk, a tool that measures water turbidity, and use the free iPhone or Android ‘Secchi’ application to share data you collect.  Get started!
 
Digital Fishers
Digital Fisher needs people to help analyze deep-sea videos — 15 seconds at a time. You’ll watch a short video of ocean life and click on simple responses to help identify what you are seeing.  Get started!

This post originally appeared on the SciStarter blog.


Check out “Exploring a Culture of Health,” a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.

Want your project featured in our newsletter? Contact jenna@scistarter.com

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Exploring a Culture of Health: Disrupting the Doctor’s Office with Flip the Clinic

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Flip the Clinic, a Robert Wood Johnson Foundation Program

Flip the Clinic, a Robert Wood Johnson Foundation Program

This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.  Posts in this series will also appear on the Discover Magazine Citizen Science Salon Blog and the SciStarter blog

Healthcare is an imperfect system. Your visit to the physician occurs only once in a while and when it does happen, these visits are often short, impersonal, and a drain on both your time and monetary resources (1). On average, a primary care doctor has more than 2,300 patients and each patient visit lasts for about 15 minutes (1). If you take a step back, you will realize that’s an extremely short time for both you and your physician to discover, process and understand an awful lot of information about your health. Not surprisingly, most of us have experienced an unsatisfactory interaction at the clinic. But, this interaction is at the heart of healthcare and ought to mean a whole lot more, reckons Thomas Goetz who helped start the  Flip the Clinic, a Robert Wood Johnson Foundation (RWJF) project that seeks to rethink the physicians’ visit.

Goetz, co-founder of the health technology company Iodine and at the time an Entrepreneur-in-Residence at Robert Wood Johnson Foundation, came up with the  idea for Flip the Clinic (FTC), while listening to  a talk at RWJF by Sal Khan of Khan Academy. In early 2013, Khan spoke at RWJF about how he “flipped the classroom” by making lectures accessible online so students could learn at their own pace and do their homework in class instead, making full use of the teacher’s presence. Khan suggested that for the doctor’s office might be ripe for such that kind of flipping too.  Goetz agreed and almost immediately started the FTC project.

“Pragmatically, the doctor’s visit is a powerful part of modern medicine. The problem is that we are not optimizing this resource; we have not reconsidered and re-evaluated how we might exploit the visit to its full advantage,” says Goetz in a blog post describing the impetus for Flip the Clinic. Flip the Clinic functions as a  hub for addressing challenges, exchanging ideas, and filtering those healthcare practices that work and those that do not. Through its website, everyone from patients to medical experts and healthcare providers can submit ideas or pose ‘flips’ relating to any aspect of the medical encounter. The community is encouraged to engage in a discussion around these potential flips.

An example of a flip on the FTC website (left) and posting and participating in Community Flips (right)

An example of a flip on the FTC website (left) and posting and participating in Community Flips (right)

Flips such as “How do I show patients that I’m invested in their health?”, “How can I encourage patients to learn more about their conditions?” and “How do you redesign the clinic?” have generated interesting conversations with comments from patients, physicians, nurses and researchers. Like me, you will probably find yourself spending time on the site flipping through many thought-provoking questions and the exchange of ideas in the comments. And, perhaps, wondering how the emerging field of citizen science could help reinvent how patients and providers interact.

One way citizen scientists could help ‘flip’ the clinic is by contributing to and using crowd sourced data from Flu Near You (2), a citizen science project. With this data, physicians and patients could alert themselves of an emerging infectious outbreak and prepare accordingly. Have other ideas? Share them. At the heart of the Flip the Clinic initiative is youWhether you are a patient, a physician, a nurse, a hospital administrator or anybody involved in healthcare, your voice matters. Your ideas and your experiences are what will help ‘flip’ the clinic. Ask yourself: as a patient, what has frustrated you about your medical encounters? As a medical provider, what ideas do you have or challenges do you experience? Share your idea for a “flip” or participate in the flips proposed by the Flip the Clinic team or community. Would your organization like to contribute to the effort? Become an organization ally. Flip the Clinic depends on your involvement. So go ahead and be part of the solution. Flip the Clinic! Image Credits: fliptheclinic.org References

  1. http://fliptheclinic.org/faq/ ‘why should a doctor’s visit change?’
  1. SciStarter is a citizen science hotspot and a partner of Discover Magazine. Flu Near You is one of the many citizen science projects on the SciStarter project database

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Coop’s Citizen Sci Scoop: Shake it up with the fast pace of citizen science

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For the past few weeks, I’ve been highlighting scientific findings made possible by citizen science that appeared in the literature each week. Methods of public engagement in sharing observations are not only useful to science, but also in a wide range of areas that need reliable information, such as urban planning, public health, environmental justice, and disaster relief. Consequently, the practice of citizen science is itself an area of innovation and active inquiry.

Roundup:

As I’ve pointed out before, the inquiry often includes comparisons of experts and amateurs. This weeks was no exception with the following two examples:

(1)  Mining urban deprivation from foursquare: implicit crowdsourcing of city land use. by Quercia and Saez.

Even when people share information for non-scientific reason, that shared information can be useful for investigations. In this example, the authors created maps of land-uses based on data from the social-media users of Foursquare in London. These maps were comparable to proprietary commercial maps. Plus, the maps revealed that well-off neighborhoods were more likely to have amenities that promote health and wellbeing, such as dance studios, hobby shops, pools, tea rooms, movie theaters, and kid stores. The poor areas were more likely to have health threats, such as factories, light rail, airports, strip clubs, and whisky bars. (This paper  was part of a special feature on citizen science in the IEEE journal Pervasive Computing. Other articles from the special feature are summarized in the footnote at the end of this post).

(2) Conducting disaster assessment with Spatial video, experts, and citizens. by Lue et al in Applied Geography 52:46-54.

In this case, Lue et al. compared the effectiveness of laypeople at CrisisMappers and experts at the American Red Cross using video to carrying out damage assessment after a natural disaster. Assessments from experienced and inexperienced people were similar, though assessing damage from video turned out to be a difficult task, irrespective of on-the-ground experience.

The potential for engaging crowds in solving problems related to disasters is widely recognized but there are many obstacles to overcome since the inquiry inherently needs to be quick. Individuals can be quick, but rarely can large crowds be coordinated to accomplish anything quickly. Let’s look at examples where citizen science happens quickly after earthquakes.

Disaster_images

Earthquake studies and responses

There are an estimated 500,000 earthquakes annually. About 100,000 release enough energy close to the surface (that is, high magnitude) that the seismic waves produce shaking that people can feel (that is, high intensity). But we cannot anticipate when they will occur.

One great example to illustrate speedy citizen science is a project called Did You Feel It? In 1997 the USGS moved their post-earthquake survey from the mail to online. At first it was called Community Internet Intensity Maps, and more recently adopted the name Did You Feel It?  With the (more than) 2,790,000 responses so far, Did You Feel It? uses an algorithm to quantify earthquake intensity by processing data on where, what was observed and what was experienced by people. Post-quake, people report remarkably similar experiences which leads to quick consensus on intensity, calculated to one decimal point, and detection of quakes even under 2.0 magnitude.

Some projects recruit people to host earthquake sensors. With these fairly effortless contributions, automated systems using low-cost micro-electronic accelerometers provide essential data to scientists. Participatory sensor networks include the Quake-Catcher Network, the Community Seismic Network, SeisMac, and iShake Cal (under development, this project uses iPhones because they already contain motions sensors).

Other projects involve incidental contributions, such as through the Twitter Earthquake Dispatch (@USGSted) algorithm developed by a team at the National Earthquake Information Center. There are 500 million people using Twitter. Cumulatively, these users publically document events. People use twitter to learn about events before those events appear in the news. Since people re-tweet, when a earthquake is mentioned, the word “earthquake” is likely to be amplified quickly – which is an easy signal to detect automatically. The TED algorithm (which looks for increases in use of the word “earthquake” in several languages) can detect a quake within 2 minutes, though it tends to miss small ones.

Using citizen science to advance our understanding of earthquakes is only half of the story. Citizen science can aid response and rescue efforts, even from a distance. Through The Global Earth Observation Catastrophe Assessment Network (GEO-CAN), people can use the Virtual Disaster Viewer (VDV) to view satellite imagery of an area before and after quake, mark differences, add notations of damage grades, and share the information with emergency responders. The Internet and smart phones have been leveraged for citizen science in ways that support the work of first responders to disasters, such as earthquakes in Wenchuan, China in 2008, Haiti in 2010, and Christchurch, NZ in 2011. Non-governmental efforts use citizen science too. The Humanitarian Open Street Map is an online platform for data sharing for humanitarian responses.

Most citizen science does not hinge on speedy reporting. For example, about 15 percent of all bird observations in Project FeederWatch this past winter arrived on paper sheets marked with number 2 pencils, delivered to the Lab of Ornithology by the USPS. It is convenient that people can enter their bird observations online, but it is far from crucial, and even by mail the projects are likely faster than global collaborations in the early, quill-pen-wielding days of citizen science. Earthquakes carry urgency. At such times, information needs to be centralized rapidly. And as the old drug-testing joke goes, the one drug that won’t be found among postal workers is speed. Most extend that joke to other government agencies, all of which can get mired in bureaucracy. Then how is it that, for example, the USGS has been able to carry out speedy citizen science with Did You Feel It?

Citizen Seismology

Last fall, the USGS and the Woodrow Wilson Center released a report on the tools of citizen seismology. The report is intended to provide lessons for other government entities wanting to develop citizen-science projects.

The trick to crafting projects with fast response times is to get all ducks in a row in anticipation of the inevitable events – there are 350 tiny quakes daily for study and invariably the big disasters that require emergency aid. Any entanglement in red tape must be prevented by moving through the obstacle course beforehand. It means navigating practical, legal, technical, policy, and ethical considerations of the whole system well ahead of time. Risk management associated with disasters is serious work: recall that in wake of deaths from after-shocks of the earthquake in L’Aquila in 2009, Italian courts convicted six scientists for manslaughter, sentencing them to 6 years in prison and $10.2 million in fines. Speedy citizen science means creating a mutually clear environment conducive to government-citizen collaborations.

The report covers two frequent stumbling blocks: the Privacy Act and the Paperwork Reduction Act. Most seismologists don’t have training in working with human subjects or experience with policies on how government entities can interact with citizens. The laws can be particularly cumbersome because they were not enacted with citizen science in mind.

The Federal Privacy Act of 1974 covers policies and procedures for how the government must handle personally identifiable information (name, social security number, finger prints, voice, photographs, and more).  Until an agency begins assembling public data submissions, typically from computers with unique IP addresses, they may not have fully explored the scope of this Act.

The intentions of the Paperwork Reduction Act of 1980 are to reduce the burden of paperwork that the government imposes on citizens. Ironically, the Act puts an overburden of paperwork on agency staff and requests to gain approval for public data collection must be submitted to the Office of Management and Budget. The approval process lasts a minimum of 90 days, which includes 60-day and 30-day public comment periods. In 2009, a Presidential Directive about Open Government resulted in inclusion of social media in the mandates of this Act.

Taken together, the tools of citizen seismology provide rapid detection, information for emergency response, and information dissemination. We need agencies to get prepared. When crises arises, we need government systems in place to quickly draw on crowds to collectively build global maps of rapidly changing conditions, and assist in emergency response.

Yes, despite red tape, agencies can provide tools for crowds to work fast. Do you feel the ground shake? The citizen science possibilities register at 9 on my Richter scale.

Photo credit:  Haiti earthquake damage in UN Photo/Logan Abassi, UN Development Programme, & screen capture of Virtual Disaster Viewer.

Footnote:

More Roundup: other articles in the special feature in Pervasive Computing included:

(1) Stevens et al. Taking participatory citizen science to extremes.

These authors help marginalized communities have a voice by supporting the communities to share their indigenous knowledge. They illustrate ways to structure citizen science to stimulate inclusion, and thereby empower communities. Visit the Extreme Citizen Science group at University College London to learn more.

(2) Bahanamonde et al. Mining private information from public data: the Transantigao case.

They use publicly available information on the smartcards cards that passengers use for daily travel on the public transportation system in Transantiago, Chile. Even though the data were anonymized, the researchers demonstrated how they can hone in on where people live and thus revealed and explored the privacy implications.

(3) Angus et al. Public goods: using pervasive computing to inspire grassroots activism.

The author illustrate how artists and engineers can work together. The artists bring the cultural interventions and the engineers bring the technical solutions. Together they offer creative, low-cost tech air pollution devices to create experiences around local concerns that mobilize communities.

 

 

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