Exploring a Culture of Health: Nurses Making Things with their Hands to Improve Healthcare with MakerNurse

Bookmark and Share
Nurses often innovate on the fly and devise new ways of improving patient care (Image Credit: Flickr / CC BY 2.0)

Nurses often innovate on the fly and devise new ways of improving patient care (Image Credit: Flickr / CC BY 2.0)

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.

Every day, nurses craft devices out of ordinary materials and hospital supplies to improve health care. These innovations aren’t dreamt up in a lab or by some research facility, they happen in the trenches, at the bedside. Innovation has been a tradition in the nursing profession ever since Florence Nightingale revamped the caregiver role into a respected occupation. Hundreds of articles were published beginning in the early 1900s where nurses shared their own hardware creations with their peers—in 1952 the American Journal of Nursing recorded an event that smacked of ingenuity when it ran a piece that described nurse Paulette Drummonds’ idea to create colorful casts for children.

The trend of nurse ingenuity continued over the years, but somewhat inconspicuously. Today, these nurse creations are often unheralded, denigrated as ’workarounds’ or invisible to bosses and others in the health care system who might benefit from the innovations. This lack of recognition for nurse innovation stirred something in Jose Gomez-Marquez and Anna Young, the duo that created MakerNurse—a project that has its home in the Little Devices Lab at MIT and is supported by the Robert Wood Johnson Foundation (RWJF).

“We know from our research that some of the best DIY technologies being used in hospitals and clinics around the world are the work of nurses. Yet these stealth innovators do not receive the recognition, support, tools, or training that they need to maximize their ability to transform the way health care hardware is created and used,” says Gomez-Marquez.

Across the nation, nurses are putting their creativity to work as they devise new ways to improve patient care. They are reimagining their supply closet, making custom bandages with advanced antibacterial properties and adapting devices for pediatric care. They are using everyday materials to make patients better, from Legos, to electrical belts, to a humble hospital blanket wrapped in medical tape to make a tiny donut that can cushion a child’s back.

“Nurse are creating these amazing just-in-time creations that are possible thanks to a combination of smart tools and good old fashioned making, customized to individual patients’ needs,” says Young.

A nurse making a prototype with a simulation mannequin (Image Credit: MakerNurse)

A nurse making a prototype with a simulation mannequin (Image Credit: MakerNurse)

MakerNurse hopes to bring these McGyverisms out of the shadows and into the mainstream. It is documenting cases of nurse making to understand more fully how nurses hack, what materials they use, and the obstacles to bringing their ideas into the light.

“We’re trying to understand what drives how those solutions are created at the bedside. What are the motivators, behaviors, and situations that compel a nurse to make? What materials did they use? How do they share their solutions?” says Gomez-Marquez. “We’re hearing from nurses around the country and, as we learn, we’re able to identify tools and prototyping strategies that could help more nurses bring their ideas for improving health care to fruition.”

MakerNurse has set up seven pilot projects in hospitals around the nation to record the solutions nurses are devising to address the various problems that they face. Using advanced prototyping strategies, the Little Devices’ team has deployed a variety of tools and shared methods with nurse units to assist nurses in moving from story to sketch to prototype. It is also collecting nurse stories via its website, a central repository that serves as a nation-wide resource for nurse makers. And in the coming months, it will launch MakerNurse Create, a set of step-by-step instructions on how to make a variety of health-related tools to help kick-start nurses’ medical ingenuity.

“We must nurture the ingenuity of nurses and other makers so we can all benefit from their innovations to improve health,” said RWJF’s Lori Melichar.

Some call them tinkerers, some call them hackers, but all should recognize the contributions that passionate makers are bringing to health care. Have you ever seen a tennis ball on the back feet of a walker? Someone hacked that walker—they don’t come over-the-counter with a tennis ball fitted.

Have you created anything to help you care for sick family members at home? What are your ideas for hacks that could improve the way doctors, nurses and others care for their patients? Tell us in the comments below!

*****

Interested in health related citizen science? There are a number of other projects that are seeking your input as a citizen scientist. The projects below are part of a database of more than 800 citizen science projects created and managed by SciStarter, an online citizen science hotspot.

Project Implicit

DIY BioPrinter

AgeGuess

 

logo

 

 

Category: Uncategorized | Leave a comment

Unpredictable and Magical: The Allure of the Dragonfly Swarm [GUEST POST]

Bookmark and Share

Chris Goforth, the creator of the Dragonfly Swarm Project, discusses how citizen science has impacted the study of dragonfly behavior.

Dragonfly swarm (Photo: David Alexander)

Dragonfly swarm

Sometimes science is hard. If you want to study something that happens slowly, is rare, or requires thousands of observations, it can take a lifetime to answer even the most basic questions. Thankfully, we live in the age of the internet, where information and willing helpers are readily available at the tap of a screen or a click of a mouse. The internet has revolutionized science as we know it and has allowed scientists to start answering some of those big or hard questions by inviting participation by citizen scientists. Citizen science today allows us to gather information on an unprecedented scale and is starting to shed light on difficult scientific problems by getting more people on the ground in more places than scientists could ever hope to reach on their own.

Dragonfly swarms are one of those difficult problems to solve scientifically. Researchers have known for decades that you can occasionally find huge groups of dragonflies either flying over a well-defined area as they feed on small insects (what I call static feeding swarms) or moving from one area to another in large migratory swarms. However, both behaviors are rarely observed and unpredictable, which makes them incredibly difficult to study. Even if you actively look for swarms, you may only see a couple dozen over your entire life. (I’ve seen 11 so far, and that’s a LOT more than most people will ever see!) One person’s swarm observations are not enough to answer the larger questions about how and why they form or what role they play in the environment.  Citizen science comes to the rescue!

Anax junius (Photo: Chris Goforth)

Anax junius

In 2010, I created the Dragonfly Swarm Project as a way to answer some of those big questions about dragonfly swarming behaviors. By simply asking people who have seen swarms to share their stories with me, I have so far been able to gather over 3100 observations of this rarely observed behavior worldwide. With the help of my citizen scientists, many of whom have only seen a single swarm, I’ve gathered a huge amount of information about dragonfly swarming behaviors and have learned some interesting things.

Static feeding swarms tend to form in areas where disturbances have occurred, such as exceptionally strong winds, severe thunderstorms, floods, or wildfires. When a disturbance moves through an area, millions of small insects become suddenly displaced. Other disturbances, such as floods, can increase the amount of breeding habitat for some insects, resulting in population explosions. In either case, you’ll see huge numbers of insects in abnormal places with dragonfly feeding swarms forming shortly afterwards. I believe that dragonfly swarms help restore the balance of nature after disturbances by controlling these surges in prey insect populations.

Migratory swarms, in contrast, come in two types. There is a huge annual fall migration of dragonflies along major rivers and coastlines in North America where millions to billions of dragonflies fly from their summer habitats thousands of miles to warmer, more hospitable places for the winter. However, large groups of migratory dragonflies may also occur whenever conditions deteriorate in an area and thousands or millions of dragonflies suddenly move en masse to a better location. This sort of migration is much rarer and far less understood. My project will provide one of the first detailed descriptions of this behavior once I formally publish my results early next year.
Continue reading »

Category: Uncategorized | Leave a comment

Just Add Water: World Water Monitoring Challenge 2013 Results

Bookmark and Share
20130918_105910_1

My WWMC kit.

The World Water Monitoring Challenge results are out!

Earlier this year, I found myself hanging over a concrete ledge by the Charles River. But not to worry – it was nothing dire. I was actually trying to collect a water sample for the World Water Monitoring Challenge.

Talk about diving headfirst into citizen science.

On September 18 of each year, the WWMC encourages people around the world to test the quality of the water near them, share their findings, and become inspired to protect one of the most important (if not the most important) resource on our planet. The entire program runs annually from March 22 (the United Nations World Water Day) until December 31.

The primary goal of the WWMC is to educate and engage citizens in the protection of the world’s water resources. Their philosophy is this: conducting simple monitoring tests teaches participants about common indicators of water health and encourages further participation in more formal citizen monitoring efforts.

It doesn’t just end with submitting your water sampling data. The WWMC make it a point to report the results back to participants each year in an annual report. The data for this year are now available online and open for all to see.

Citizen scientists across 6 continents and 51 countries participated. Taiwan alone reported 92,023 individual efforts.  Within the U.S., Florida took the lead with 10,143 reported individual efforts. In all, 10,371 water test kits were distributed.

Screen Shot 2014-07-21 at 11.51.14 AM Screen Shot 2014-07-21 at 11.48.20 AM

*The data in this graph represent the mean average results for regions listed in the map, spanning from 2009 to 2013. The results reported for WWMC do not constitute a completely thorough and accurate portrayal of the health of the world’s water. Accurate water quality monitoring requires the use of standard quality assurance protocols and is conducted by trained volunteer monitoring groups and professionals around the world.

WWMC participants sampled local lakes, streams, rivers, ponds, reservoirs, and other water bodies and ran simple tests for four key water quality indicators: dissolved oxygen, pH levels, temperature, and turbidity. (Learn more about why these things are important to measure when it comes to water quality monitoring.) Some groups even tested for the presence of macroinvertebrates such as dragonflies, mayflies, and scuds. Samples were taken in a range of settings – agricultural, commercial, residential, and industrial.

This project is ideal for anyone who lives near a water source, educators who want ideas to teach students about water chemistry, or citizen scientists hoping to get their feet wet with an increasingly important field of research. 

References:

Full World Water Monitoring Challenge 2013 report

 Images: www.worldwatermonitoringday.org

 This originally appeared on the SciStarter blog.

Category: Uncategorized | Leave a comment

Coop’s Citizen Sci Scoop: The nine simultaneous lives of cats

Bookmark and Share

Discover Magazine’s September print edition featured an infographic called “20 Things You Didn’t Know About Cats.” Felines seem to lead elusive, mysterious lives. Fortunately, the citizen science project Cat Tracker allows you to track your cat beyond what we can directly observe.

Cats are moody.

In the blink of an eye, a cat can change from aloof to affectionate, playful to predatory, carefree to curious. The myth about nine lives is oddly suitable, but not as nine sequential lives. Instead, it is as though cats have nine personalities which results in living nine lives all at once.

Now their multifaceted personalities make us laugh with LOL Cats.

lol_cats_by_anamalous4_httpbit.ly1AgO0w5

photo credit: anamalous4 (http://bit.ly1AgO0w5)

But the joke is on us. Pet cats remain a mystery living right under our noses. We share our homes with them. We adopt them into our families. And if we let them outside, then there is a significant part of their lives for which we are clueless. Curled up on our laps rests Dr. Jekyll, but out the door goes a stalking Mr. Hyde.

A new collaboration between cat owners and scientists seeks to find out where cats go and what they may eat along the way. The scientists of Cat Tracker are a team of professors and students at the NC Museum of Natural Sciences, in NCSU Biological Science (Your Wild Life), and at the NCSU Veterinary School. The cat owners so far are mostly in North Carolina, though recruits are now signing up from many other states, and soon in Australia and New Zealand.

Cat owners outfit their pet with a tiny satellite tracking device on a special collar. Undergraduate Troi Perkins programs the GPS units, fits them into cases that she makes on a 3-D printer, and then visits owners and helps “harness the little fuzz balls.” People outside of the Raleigh area participate in a Do-It-Yourself (DIY) style in four easy steps.

Together, a GPS unit and harness costs about $50. Each cat wears the gear for about a week. Then, while their pets feign innocence upon return from numerous excursions that week, the owners remove the collar, attach the GPS unit to their computer, and download the secrets movements of the silent footed. The cat owners submit the tracking information to a public data repository on animal movements, called Movebank. Until now, Movebank was only used by professional researchers. With members of the public engaging in animal tracking, the amount of information will quickly rise.

motorcat_collar

photo credit: Your Wild Life

Some participants opt to go one step further in their desire to understand their cat companion. They divert the contents of the litter box from the garbage to specimen cups picked up by the NCSU researchers. These fecal samples will be examined for microbes and DNA from the potential remains of wildlife.

To date, Cat Trackers has gathered data on the movement of over 40 cats.  Their goal is to track 1,000 cats.

Troi says she most commonly hears Cat Tracker participants say, “Oh my… my cat has traveled over the highway?!” She explains that people are usually surprised by their cat’s outdoor explorations and curious to know whether their cat is a loner or hanging out with their neighbor’s cats. She say, owners “just want to see if their cats are crossing busy roads, visiting other people’s houses, or going into remote wooded areas.”

Researchers wonder similar things, particularly about visits to wooded areas. Cats are not necessarily as benign as their purring might make us believe. Cats transmit diseases to humans. Cats eat birds and other wildlife. A study by Smithsonian and US Fish & Wildlife Service researchers gave estimates that cats kill at a minimum of one billion birds and seven billion small mammals every year.

Roland Kays, Director of the Biodiversity Lab at the NC Museum of Natural Science explained that tracking at least a thousand cats will reveal secrets “not only about the typical cat movements, but also about the extraordinary ones.  Given that cats are so common in the country, if even 5% of them are moving out into the nature preserves it could be quite harmful to native wildlife.”

Rob Dunn of NCSU’s Your Wild Life explained that “the big result so far is that there are a lot of cats that walk short distances most days and then every so often, for whatever reason, bolt for it often up to a mile before coming right back And then a few cats just seem lost.” On the Cat Tracker website, the cat movements look like starburst pattern in every direction around their home.

cat_tracks_movebank

photo credit: Your Wild Life

As residential areas expand adjacent to natural areas, and become increasingly important for biodiversity conservation and for human wellbeing, conflicts between bird-lovers and cat-lovers escalate. Perhaps more information can help find common ground.

It was over 9,000 years ago when our ancestors started taming nature. First we learned how to turn wild plants into crops. We stored the harvest, but this brought mice. So then, in the Near East, people domesticated cats to function as mousers. We turned wild cats into pets. We’ve bred them to be fluffy and leisurely, yet fierce and playful. Siamese, Tabby, Calico. Their appearances are as different as their personalities. Lions congregate together in prides. House cats simply have pride. An over-abundance of it.

All of our pet cats retain their heritage, balancing a dual identity of being a little wild, a little tame. Cat Tracker provides an in-depth peek into the behaviors of cats, whether predatory, social, or antisocial. Dunn told me that one household with nine cats just signed up. As more owners with multiple cats participate, perhaps we’ll gain insight into the idiom about herding cats and finally come to grips with the futile attempts to control this chaotic group.

This post first appeared at Discover‘s Citizen Science Salon.

Want more citizen science? Head over to the SciStarter portal, where you’ll find 800+ opportunities to choose from.

Category: Citizen science | Tagged , , , , , , , , , | 1 Comment

Citizen Science is a Shore Thing!

Bookmark and Share

Share jellyfish sightings, track stars during evening beach strolls, count fireflies, or report dragonfly swarms while you’re at the beach this summer. Or participate in dozens of other summertime citizen science projects and advance fields of research in the process! Why not do them all?

Hey! If you’re involved in more than one project, we’d like to hear from you. Email carolyn@scistarter.com to find out why.

 

Globe at Night

Because of light pollution, six out of 10 people in the US have never seen our Milky Way Galaxy arch across their night sky from where they live. Now you can measure the night sky from the beach and contribute to important research. Get started!

 

Dragonfly Swarm Project
Ever see a dragonfly swarm? Magical, aren’t they? Share your observations to help researchers understand where and how these aerial predators swarm. Get started!

 

Jellywatch
Have you seen a jellyfish? Report it to Jellywatch — a public database documenting ocean conditions. They are especially interested in jellyfish washing up, but also track red tides, squid and mammal strandings, as indicators of ocean health. Get started!

 

Marine Metre Squared
MM2 is an easy way to survey the intertidal community in New Zealand. Monitor a 1m x 1m square patch of your local rocky shore once every season by recording the animals and plants that live there. Get started!

 

COASST
Monitor marine resources and ecosystem health at 300 beaches across northern California, Oregon, Washington, and Alaska. Survey your beach every month and COASST will put the data together and decipher the patterns across the entire survey range. Get started!

 

SEANET
Seabird Ecological Assessment Network (SEANET) volunteers conduct beached bird surveys along the east coast of the United States in order to identify and record information about bird deaths. Help identify where bird carcass are found, and how this varies across time. Get started!

 

BEACH
The Beach Environmental Assessment, Communication, and Health project participants monitor high-risk Washington state beaches for the bacteria called “enterococci” to reduce the risk of disease for people who play in saltwater. Get started!

This 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.

Category: Uncategorized | Leave a comment

Exploring a Culture of Health: Creating a Roadmap to Community Health

Bookmark and Share
Creating roadmaps to healthy communities with County Health Rankings(Image redit:  Flickr/Don Debold)

Creating roadmaps to healthy communities with County Health Rankings(Image credit: Flickr/Don Debold CC BY 2.0)

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.

At first glance, Gem County in Idaho seems like it has everything made. Its county seat, Emmett was named “the best small city in Idaho,” and it will soon be launching a $53 million hydroelectric project destined to expand capacity to power 9,359 homes a year. But health data told another story when the community placed last in Idaho for healthy behaviors in the 2010 County Health Rankings.

News of the Rankings was a wake-up call for Bill Butticci, the mayor of Emmett, and many of the county’s citizens. They formed the Community Health Connection group with the goal of improving the county’s ranking.

The group began by conducting a community exercise from the Centers for Disease Control and Prevention (CDC) called CHANGE (Community Health Assessment and Group Evaluation ), a process that identified tobacco use, obesity, and chronic disease as areas on which to focus their health change efforts.

With no significant budget, the group began by offering free or low-cost programs—educating the community about tobacco use, establishing walking trails, and more. They also established a community garden along with a learning garden to teach youth healthier eating alternatives, and how to grow their own healthy food. And Gem County became the first in the state to ban smoking in certain buildings and park space.

Now Mayor Butticci uses the Rankings as a way to monitor the county’s health, “The Rankings give us a score card to keep us on track,” he says.

Gem County, Idaho used the County Health Rankings as a wake up call to build a culture of health (Image Credit: County Health Rankings)

Gem County, Idaho used the County Health Rankings as a wake up call to build a culture of health (Image Credit: County Health Rankings)

The County Health Rankings, an annual look at how counties compare within all 50 states on key factors that impact health, helps counties understand what influences the health of residents and how long they will live.

“The major appeal of the Rankings is that they simplify complex data into an easily understood number or rank that can be used to generate attention toward specific issues, such as obesity, children in poverty, high school graduation rates, housing and teen pregnancy,” says Dr. Bridget Booske Catlin, a senior scientist at the University of Wisconsin-Madison Population Health Institute, and the director of the County Health Rankings. “They prompt action by community leaders, politicians, funders, and community residents to improve their health and the health of others in their community.”

The Rankings have their origins in America’s Health Rankings, state-level rankings that have been published since 1990.

“Curious about why the state rankings rose and fell over time, my colleagues at the university’s Population Health Institute (UWPHI) began to wonder if, just as Tip O’Neill maintained that ‘politics are local’, that perhaps ‘health is local’ too. They delved into the task of measuring the health of Wisconsin’s counties and released the first Wisconsin County Health Rankings in 2003,” explains Catlin.

Over the next few years, other states became interested in using UWPHI’s approach to understand the health of their counties, and the work came to the attention of the Robert Wood Johnson Foundation (RWJF) which decided to collaborate with UWPHI to expand the Rankings to every state. In 2010, RWJF and UWPHI released the first national County Health Rankings.

Communities in Action

Communities have used the Rankings data to help them identify problems to solve, shift expectations to a longer view, and evaluate success over time.

In 2013, RWJF introduced the RWJF Culture of Health Prize to honor communities that have placed a priority on the health of their citizens. The prize winning communities vary in size and type – some are larger urban cities and some are small rural areas. But they all have one thing in common: In each of these places community leaders, individuals, business, government and educators have forged powerful partnerships to inspire people to live healthier lives.

Winners of the 2014 RWJF Culture of Health Prize (Image Credit: RWJF)

Winners of the 2014 RWJF Culture of Health Prize (Image Credit: RWJF)

“Our goal is to use this award to bring national attention to the prize winners’ strategies and solutions, and inspire other communities to learn from their experience and set their own course for better health,” says Joe Marx, senior communications officer at RWJF.

In the first year of the prize, about 160 communities applied and in the second year, that number increased to over 250 places who are working to make their communities healthier places to live, learn, work, and play. For 2014, the RWJF Culture of Health Prize winning communities are Brownsville (TX), Buncombe (NC), Durham (NC), Spokane (WA), Taos Pueblo (NM) and Williamson (WV).

“We also have worked closely with national partners—United Way Worldwide, National Association of Counties, and the National Business Coalition on Health, and their affiliates in hundreds of additional communities who are looking at data from the Rankings and then developing partnerships with people from many different sectors to build a Culture of Health,” explains Abbey Cofsky, a senior program officer at RWJF.

Get Involved

Check out your county’s ranking at the County Health Rankings  (There is a really helpful little toggle switch on the right of the page, which allows you to identify low-scoring areas). As a citizen scientist, are there data could you collect to help improve health in your county? For example, could you lead a charge to catalog the number of bike paths or parks in the area and their condition? Share your ideas below.

Think your community is doing a good job at improving health? RWJF recently released the Call for Applications for the 2015 RWJF Culture of Health Prize.

*****

Interested in health related citizen science? There are a number of other projects that are seeking your input as a citizen scientist. The projects below are part of a database of more than 800 citizen science projects created and managed by SciStarter, an online citizen science hotspot.

Home Microbiome Study

Sound Around You

The Human Memome Project

 

logo

Category: Uncategorized | Tagged | Leave a comment

Coop’s Citizen Sci Scoop: Patients who were research subjects and the doctors who listened – the citizen science of HIV/AIDS research

Bookmark and Share

Many prominent people involved in HIV/AIDS research lost their lives when Malaysian plane MH17 was shot down over Eastern Ukraine. HIV/AIDS researchers exemplify how scientists serve the public good. A key to HIV/AIDS research has involved embracing a certain type of citizen science.

The rapid advances in HIV/AIDS treatment in the late 1980s and early 1990s occurred because of major changes in medical research brought about by the lay public. In part, AIDS activists were eager to reform clinical trials in the United States. But equally important, the biomedical research community was (ultimately) receptive to this change.

The term citizen science in this blog is used to describe projects where the public engages in scientific research. It is usually through collecting and sharing observations or by coding data online. Citizen science can also be used more broadly to describe ways that the lay public participates in and influences the practice of science. (Indeed, the term “citizen science” was initially coined by Alan Irwin in 1995 to mean just that).

Oraquick_HIVtest_by_Marcello_Casal_Jr

Oraquick HIV test, photo by Marcello Casal Jr

A colleague recently sent me a 1995 journal article by Steven Epstein. Now a prominent sociologist, his article is a condensed version of Epstein’s dissertation research about the social movement of AIDS activists. (For further reading, see his book).

I summarize Epstein’s research in this post. He examined how AIDS activists became seen as credible agents of the scientific community and developed into important partners to AIDS researchers and government officials in the United States.

In 1981, AIDS was recognized as an epidemic. In 1985, the HIV antibody test became available to the public. People, mostly in their twenties and thirties, were learning that they were infected long before they showed any symptoms. But this was long before any effective treatments were discovered. A positive test result was a like a death prophecy. Some accepted their fate; many others became activists searching for a cure.

In the United States, the group primarily seen as affected by the disease were already seasoned activists in making the public aware of gay identity. The homophile movement of the 1950s was followed by the gay liberation movement of the 1970s. The gay and lesbian community had already “demedicalized” gayness. They had redefined their social status, becoming a legitimate “interest group” in the pursuit of civil rights. They had resources, people of influence, funding, a strong public relations arm, lobby groups, and community-based organizations.

This group understood that the future of their health required a close working relationship with scientists. Anything less would be group suicide. AIDS research involved all types of scientists who had strong credentials, such as immunologists, virologists, molecular biologists, epidemiologists, and physicians. How could the lay public improve their research?

The answer was speed. Initially, AIDS activism focused on the FDA and the desire for more rapid approval of experimental drugs and the ability to obtain unproven treatments from other countries. When none of the existing drugs were working, activists focused on the NIH, seeking more drugs to test. It was in this way that treatment activists influenced not only the design, conduct, and interpretation of clinical trials, but also the speed in which they were carried out. The timeframe for testing the safety and efficacy of AIDS drugs was reduced, counted in months, rather than years. 

Treatment delayed was treatment denied. By 1987, more than 46,000 Americans were infected with HIV and over 13,000 had died from AIDS.

Storm_NIH_die-in_1990_National_Institutes_of_Health_Library_Branson_Collection

Storm the NIH “die-in” in 1990, National Institutes of Health Library, Branson Collection

 

To take one example, Mark Harrington, a script writer with no scientific background, epitomizes the involvement of AIDS activists in science. Like other activists, Harrington helped ACT UP to organize demonstrations. In 1988, it was “Seize Control of the FDA.” On May 21, 1990, it was “Storm the NIH.” These protests drew attention, but a more nuanced discussion of scientific practices was needed. Activists did not want to be victims, or be powerless or oppressed. They wanted to help discover treatments, even if that meant trying lots of drugs that did not work. Harrington responded by learning the technical details of AIDS, until he could participate knowledgeably in scientific discussions. By 1992, Mark delivered his first plenary at the Eight International AIDS conference.  He began co-authoring peer-reviewed papers, and continued to publish for years (including, for example, a 2006 paper in PLOS Medicine).

How did Harrington go from street demonstrator to scientific collaborator? AIDS activists like Harrington took a four-pronged strategy to gain credibility and authority.

Abacavir_(Ziagen)_300mg_by_Bastique

Activists learned medical language: Abacavir, now used to treat HIV and AIDS, is a nucleoside analog reverse transcriptase inhibitor; photo by Bastique

First, influencing drug testing required a working knowledge of pharmaceutical companies and government. To be successful, the activists had to learn to speak the language of the researchers and learn the culture of medical science. Activists learning about biomedical research found it similar to learning a foreign language and entering another country. Immersion was best. This meant attending scientific conferences, critiquing research projects, even being tutored by scientists. They would read a protocol, learn as much as possible about how the drug is known to work, learn about virology, immune systems, statistics, as well become familiar with the regulations just like an informed patient. Harrington prepared a 50-page dictionary of the vocabulary. Soon activists could talk about viral assays, reverse transcription, cytokine regulation, epitope mapping. Once activists spoke the language, scientists were receptive to discussions.

Second, activists presented themselves as informed, knowledgeable representatives – voices of people who were suffering with AIDS/HIV. Researchers wanted to work with activists too because then they could better ensure that enough people would enroll in their treatment trials and comply with protocols. Activists brokered the relationship between researchers and patients.

Third, activists linked arguments about scientific methodological to moral arguments. For example, early trials were of middle-class white men, but affected populations included injection drug users, people with hemophilia, women, minorities, and heterosexuals. Activists conceived of experimental treatments as a social good to which everyone should have equal access. The history of clinical trials in the United States is full of stories of abuse, lack of informed consent, and people unknowingly exposed to risk and harm. Activists shifted discourse to emphasize the right of human subjects to assume the risks of experimental therapies and to be informed partners in scientific methods. They wanted policy that was credible both morally and scientifically.

Fourth, and perhaps most important, activists were taking sides in debates about clinical trials. Before activists took sides, most researchers performed only randomized, controlled, clinical trials with particular methods that did not allow research subjects to have access to potentially helpful treatment.

People who already tried one treatment would be excluded from tests of a new treatment in the name of “clean data.” But not all researchers believed in clean data. The world, after all, is messy and many researchers thought drugs should be tested in real-world situations.  Activists favored the pragmatic “messy” practice. They feared the “fastidious” practice of clean data from homogenous groups because it prevented terminally-ill patients from trying new treatments.  Activists argued that the only way to obtain clean data in a messy world was to unfairly manipulate and control people. But you could, they and scientist-allies argued, get reliable answers quickly in the real-world if there was a change in clinical trials.

Underlying the four-prong strategy is the basic premise that AIDS clinical trials function simultaneously as research and medical care.

After constant efforts, AIDS activists gained authority, which usually only comes from academic degrees and institutional affiliations. They went from diseased victims to activist-experts. They became citizen scientists.

Today such activists are voting members of NIH committees that oversee drug development.

They are representatives at FDA advisory committee meetings where drugs are considered for approval.

They serve on institutional review boards of hospitals and research centers.

And, like many of the passengers on Malaysian Airlines flight 17, they fly to global conventions on AIDS research.

 

Category: Citizen science | Tagged , , , , , , , , , , , , , , | 2 Comments

Exploring a Culture of Health: How Can We Visualize Health Data for Better Communication?

Bookmark and Share
vizhealth front image

From Data to Story: Visualizing Health Data for Better Communication (Image Source: Modified from VizHealth.org / CC BY)

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.

There is a seemingly endless stream of health data. Visit the doctor and you get a report listing various bits of data such as your weight, blood pressure, cholesterol and blood sugar. Listen to the news and you hear statistics on risk factors, medication side effects or mortality rates. All potentially useful information, but without background or context, the numbers are likely confusing, meaningless and eventually forgotten. “For health data to be meaningful, the person needs to see themselves in that data. To make this happen, we need to understand how to present data so that it conveys a complete message, not just a number,” says Andrea Ducas, program officer at the Robert Wood Johnson Foundation (RWJF).


Continue reading »

Category: Citizen science | Tagged | Leave a comment

Coop’s Citizen Sci Scoop: Does citizen science get lost in translation?

Bookmark and Share

View_from_Vespucci_by_Derya

I spent this week in Fiesole, Italy at the Vespucci Institute held at Fattoria di Maiano. I was vacationing helping facilitate a summer course about citizen science and VGI (which stands for Volunteered Geographic Information). With colleagues in all career stages from around the world, we explored the foundations and frontiers of these overlapping disciplines.

I toss any sort of public engagement in data collection into the hat of citizen science. If new knowledge is created and it would not have been possible (or feasible) without public contributions of data, then it is citizen science.  The term has caught on in the media. It is a short, simple, and provocative term for a complex phenomenon. This phenomenon actually occurs in different disciplines often under different names, like within VGI, community science, civic science, community-based natural resource management, crowdsourcing, volunteer monitoring, participatory sensing, and the list goes on.

The different terms make it tricky to communicate clearly about citizen science across disciplines, even when we are using one language.  At Vespucci this week, there are colleagues from a dozen countries. Another facilitator, Andrea Wiggins, wondered how citizen science translates into other languages. Using Twitter, she posted the question under #citizenscience.

twitter_andrea

In some languages, the term citizen science translates directly and retains the same meaning. In other languages, a slightly altered translation is necessary to convey the meaning. In other languages, the English version is inserted. And in some languages, there is no phrase to describe the phenomenon captured by the phrase citizen science (even though it occurs where the language is spoken). Here is a summary:

Español: “ciencia ciudadana” (click for example) or or “ciencia participative” (click for example) and “colaboración ciudadana en investigación” (citizens collaborating on science)

Catalan: “ciència ciutadana”

French: “Science citoyenne” (click for example)

Italian: no translation (In Italy, they use the English term)

German: “Bürgerwissenschaft” (click for example)

Turkish “Vatandaş Bilim”  (click for example)

Gaeilge (Irish): “Eolaíocht Saoránach” (this term hasn’t been used yet and is not a direct translation; the words translate directly as “science” and “freedom of the citizen”)

Egyptian Arabic: no translation

Hebrew: Mada Ezrachi (this translation uses the word civil instead of citizen, similar to civil engineering)

Chinese: 公民科学  (click for example)

Do you know of the use of the term citizen science in other languages? In which languages does it translate? Where does it not translate? Please share in the comments below.

July 15 Update: Portuguese: Ciência Cidadã (thanks @ferminserrano, @ibercivis)

photo credit: view from classroom at Fattoria di Maiano by Derya Akkaynak

 

Category: Citizen science | Tagged , , , , , , , , | Leave a comment

Aflutter for Moths and Butterflies

Bookmark and Share

With National Moth Week worldwide AND the Big Butterfly Count in the UK launching on July 19, we’re all aflutter! SciStarter’s editors netted a list of seven other Moth and Butterfly research projects.

Learn more about National Moth Week through the Encyclopedia of Life’s Moth Week podcast!

Mothing
Take and upload photographs of moths near your porch light. You can identify them if you’d like, or these researchers we’ll help. Get started!

 

unnamed (1)Pieris
Catch a few cabbage white butterflies, and send ‘em in! With your help, researchers can create the world’s most comprehensive butterfly collection to learn how the cabbage white butterfly has adapted to new environments as it expanded across the globe. Get started!

 

Journey North
Get involved in this study of Monarch butterfly migration and seasonal change. Share your field observations with others across North America. Find free dynamic migration maps, pictures, and more! Get started!

 

 

Butterflies and Moths of North America
This web site and database shares butterfly and moth species information with the public via dynamic maps, checklists, and species pages. Data are updated in real time and come from a variety of sources, including citizen scientists. Get started!

 

L.A. Butterflies
The Museum of Natural History, Los Angeles County, is partnering with Butterflies and Moths of North America (above) to share data and learn more about L.A. butterflies and moths. There are 237 species recorded for L.A, County, but how many can you find? Get started!

 

Project Silkmoth
Help scientists learn more about silkmoths and learn more about them yourself in the process. Silkmoth accepts sightings of giant silkmoths from northern New York State. Get started!

 

 

LepiMAP
Photograph butterflies and moths anywhere in Africa to map their distribution and help determine conservation priorities on the African continent. Get started!

This post originally appeared on the SciStarter blog


From our partners:

Discover Magazine:
We want to hear about your experiences as a citizen scientist. Tell us, in 250 words or less, your story. Discover will choose favorite essays to run in the October print issue (featuring citizen science stories!) , and five lucky winners will receive a free one-year subscription to Discover.
Enter by July 13!

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.

WHYY:
This is week on The Pulse and SciStarter’s segment about citizen science, producer Kimberly Haas speaks with Dan Duran, who is running a project that monitors the elusive Elaphrus beetle to monitor stream health.  Listen and learn!

Want your project featured in our newsletter, homepage or partners’ sites? Contact rae@scistarter.com

The Encyclopedia of Life’s podcast is part of the One Species at a Time series hosted by Ari Daniel and produced by Atlantic Public Media and the Encyclopedia of Life, with the support from the Harvard Museum of Comparative Zoology. Licensed under Creative Commons Attribution 3.0.

Category: Uncategorized | Leave a comment