Archive for the ‘Health’ Category
Project Image Credits (In order): GoViral, DOD, Wildlife Data Integration Network, Clumpy, Wikimedia Commons
I hate the smell of a mall. Everything reeks of that seemingly incurable lust for stuff—‘buy me, buy me’ is the cry. It’s as if the building is overdosing on the smell of money, and perspires that sickly-sweet perfume. You can lick it off the air. But that’s just me—my daughter loves it.
It’s not accidental. There are firms who research and provide signature scents for companies like Tommy Hilfiger. Marketplace.org recently reported on this. And if you didn’t know that, consider this: scientific papers have been published that actually test the impact of ambient odors on mall shopper’s emotions, cognition and, wait for it… spending!1 The authors concluded that the cognitive theory of emotions explains the influence of ambient scent best, and they went on to discuss managerial implications. I guess if LL Bean could manage that I would become more entranced with the idea.
Recently, the Smell Experience Project, a citizen science project that tested volunteers for a change in odor perception, published its findings. Imagine that you walked into Macy’s and smelt something like dog vomit, but it was the actual signature scent—you would know that your nose is misleading you—that would be a give-away. Dolores Malaspina, MD the researcher at The Institute for Social and Psychiatric Initiatives who is using this information is particularly interested in what a change in olfaction or odor perception actually tells physicians and psychiatrists. She says, “We have a large amount of publications showing that olfaction is related to symptoms and cognition in schizophrenia and that there are strong sex differences in cases and controls. In the disease we have appreciated olfaction as an indicator of higher cognitive control, in addition to olfactory specific mechanisms and regions. We can use profiles of olfactory function to address the heterogeneity of schizophrenia, that is, to find different subgroups of cases.”
Another question that can’t be ignored is whether the deficits in olfactory perception could be a cause of behavioral distress or disorders. To address this question Malaspina and colleagues conducted an Internet based study of 1000 people reporting a change in olfactory function2. She says the results were intriguing, “They showed that olfactory dysfunction substantially impacts a person’s quality of life, despite being of little concern to treating physicians.” The results show that olfactory stimulation and processing may help maintain a healthy brain, and people who loose their sense of smell may experience emotional consequences.
While there may be less practical problems associated with impaired or distorted odor perception than with impairments in visual or auditory perception, many affected individuals report experiencing olfactory dysfunction as a debilitating condition. Smell loss-induced social isolation and smell loss-induced anhedonia (the inability to experience social enjoyment) can severely affect quality of life.
I might mention that Discover has published a long list of Malaspina’s work, and she notes that, “Discover was also one of the first magazines to take my findings on paternal age and psychiatric illness seriously. They published this in an article by Josie Glausiusz entitled Seeds of Psychosis in the 2001 edition.”
Changes in odor perception can be a symptom of a condition, such as depression, head injury, dementia, or allergies, or a side effect of medication. Because the changes are subjective and difficult to measure, medical professionals often do not ask patients about changes in their sense of smell. As a result, there is little documented information about these changes. With the Smell Experience Project researchers successfully turned to the public for their help to better understand how changes in sense of smell can serve as an important and useful health indicator.
- Impact of ambient odors on mall shoppers’ emotions, cognition, and spending – A test of competitive causal theories Jean-Charles Chebat, Richard Michon, Journal of Business Research, 2003.
- Hidden consequences of olfactory dysfunction: a patient report series Keller and Malaspina, 2013
This post, written by Christine Nieves, originally appeared on the Robert Wood Johnson Foundation Pioneering Ideas blog. Check out the citizen science projects mentioned in the post, such as: FoldIt, Sound Around You, and FightMalaria@Home.
I remember the distinct feeling of learning about Foldit. It was a mixture of awe and hope for the potential breakthrough contributions a citizen can make towards science (without needing a PhD!). Foldit is an online puzzle video game about protein folding. In 2011, Foldit users decoded an AIDS protein that had been a mystery to researchers for 15 years. The gamers accomplished it in 3 weeks. When I learned this, it suddenly hit me; if we, society, systematically harness the curiosity of citizens, we could do so much!
Coop’s Citizen Sci Scoop: Patients Who Were Research Subjects and the Doctors Who Listened – the Citizen Science of HIV/AIDS Research
Editor’s Note: Flight MH17 was a horrible tragedy, with many lives lost, including HIV/AIDS researchers en route to a conference. In Caren Cooper’s latest Coop’s Citizen Sci Scoop, she explains how citizen science assisted with AIDS research, and how AIDS activists were able to become participatory members of the medical and scientific process. Here, in full, is Caren’s post.
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).
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.
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.
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.
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).
A team of scientists from the University of Michigan team set out to solve this problem, creating Visualizing Health, with support from RWJF, to explore ways to visualize health data. When designed well, visuals can be powerful tools for conveying information. “What we lack is data on how best to present data,” says Thomas Goetz, former RWJF Entrepreneur-in-Residence and collaborator on Visualizing Health.