Posts Tagged ‘Johns Hopkins University’

By Suzanne Allard Levingston

With her hair pulled back and her casual office attire, Ellie is a comforting presence. She’s trained to put patients at ease as she conducts mental health interviews with total confidentiality.

She draws you into conversation: “So how are you doing today?” “When was the last time you felt really happy?” She notices if you look away or fidget or pause, and she follows up with a nod of encouragement or a question: “Can you tell me more about that?”

Not bad for an interviewer who’s not human.

Ellie is a virtual human created by scientists at the University of Southern California to help patients feel comfortable talking about themselves so they’ll be honest with their doctors. She was born of two lines of findings: that anonymity can help people be more truthful and that rapport with a trained caregiver fosters deep disclosure. In some cases, research has shown, the less human involvement, the better. In a 2014 study of 239 people, participants who were told that Ellie was operating automatically as opposed to being controlled by a person nearby, said they felt less fearful about self-disclosure, better able to express sadness and more willing to disclose.

Getting a patient’s full story is crucial in medicine. Many technological tools are being used to help with this quest: virtual humans such as Ellie, electronic health records, secure e-mail, computer databases. Although these technologies often smooth the way, they sometimes create hurdles.

Honesty with doctors is a bedrock of proper care. If we hedge in answering their questions, we’re hampering their ability to help keep us well.

But some people resist divulging their secrets. In a 2009 national opinion survey conducted by GE, the Cleveland Clinic and Ochsner Health System, 28 percent of patients said they “sometimes lie to their health care professional or omit facts about their health.” The survey was conducted by telephone with 2,000 patients.

The Hippocratic Oath imposes a code of confidentiality on doctors: “I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know.”

Nonetheless, patients may not share sensitive, potentially stigmatizing health information on topics such as drug and alcohol abuse, mental health problems and reproductive and sexual history. Patients also might fib about less-fraught issues such as following doctor’s orders or sticking to a diet and exercise plan.

Why patients don’t tell the full truth is complicated. Some want to disclose only information that makes the doctor view them positively. Others fear being judged.

“We never say everything that we’re thinking and everything that we know to another human being, for a lot of different reasons,” says William Tierney, president and chief executive of the Regenstrief Institute, which studies how to improve health-care systems and is associated with the Indiana University School of Medicine.

In his work as an internist at an Indianapolis hospital, Tierney has encountered many situations in which patients aren’t honest. Sometimes they say they took their blood pressure medications even though it’s clear that they haven’t; they may be embarrassed because they can’t pay for the medications or may dislike the medication but don’t want to offend the doctor. Other patients ask for extra pain medicine without admitting that they illegally share or sell the drug.

Incomplete or incorrect information can cause problems. A patient who lies about taking his blood pressure medication, for example, may end up being prescribed a higher dose, which could send the patient into shock, Tierney said.

Leah Wolfe, a primary care physician who trains students, residents and faculty at the Johns Hopkins School of Medicine in Baltimore, said that doctors need to help patients understand why questions are being asked. It helps to normalize sensitive questions by explaining, for example, why all patients are asked about their sexual history.

“I’m a firm believer that 95 percent of diagnosis is history,” she said. “The physician has a lot of responsibility here in helping people understand why they’re asking the questions that they’re asking.”

Technology, which can improve health care, can also have unintended consequences in doctor-patient rapport. In a recent study of 4,700 patients in the Journal of the American Medical Informatics Association, 13 percent of patients said they had kept information from a doctor because of concerns about privacy and security, and this withholding was more likely among patients whose doctors used electronic health records than those who used paper charts.

“It was surprising that it would actually have a negative consequence for that doctor-patient interaction,” said lead author Celeste Campos-Castillo of the University of Wisconsin at Milwaukee. Campos-Castillo suggests that doctors talk to their patients about their computerized-record systems and the security measures that protect those systems.

When given a choice, some patients would use technology to withhold information from providers. Regenstrief Institute researchers gave 105 patients the option to control access to their electronic health records, broken down into who could see the record and what kind of information they chose to share. Nearly half chose to place some limits on access to their health records in a six-month study published in January in the Journal of General Internal Medicine.

While patient control can empower, it can also obstruct. Tierney, who was not involved as a provider in that study, said that if he had a patient who would not allow him full access to health information, he would help the patient find another physician because he would feel unable to provide the best and safest care possible.

“Hamstringing my ability to provide such care is unacceptable to me,” he wrote in a companion article to the study.

Technology can also help patients feel comfortable sharing private information.

A study conducted by the Veterans Health Administration found that some patients used secure e-mail messaging with their providers to address sensitive topics — such as erectile dysfunction and sexually transmitted diseases — a fact that they had not acknowledged in face-to-face interviews with the research team.

“Nobody wants to be judged,” said Jolie Haun, lead author of the 2014 study and a researcher at the Center of Innovation on Disability and Rehabilitation Research at the James A. Haley VA Hospital in Tampa. “We realized that this electronic form of communication created this somewhat removed, confidential, secure, safe space for individuals to bring up these topics with their provider, while avoiding those social issues around shame and embarrassment and discomfort in general.”

USC’s Ellie shows promise as a mental health screening tool. With a microphone, webcam and an infrared camera device that tracks a person’s body posture and movements, Ellie can process such cues as tone of voice or change in gaze and react with a nod, encouragement or question. But the technology can neither understand deeply what the person is saying nor offer therapeutic support.

“Some people make the mistake when they see Ellie — they assume she’s a therapist and that’s absolutely not the case,” says Jonathan Gratch, director for virtual human research at USC’s Institute for Creative Technologies.

The anonymity and rapport created by virtual humans factor into an unpublished USC study of screenings for post-traumatic stress disorder. Members of a National Guard unit were interviewed by a virtual human before and after a year of service in Afghanistan. Talking to the animated character elicited more reports of PTSD symptoms than completing a computerized form did.

One of the challenges for doctors is when a new patient seeks a prescription for a controlled substance. Doctors may be concerned that the drug will be used illegally, a possibility that’s hard to predict.

Here, technology is a powerful lever for honesty. Maryland, like almost all states, keeps a database of prescriptions. When her patients request narcotics, Wolfe explains that it’s her office’s practice to check all such requests against the database that monitors where and when a patient filled a prescription for a controlled substance. This technology-based information helps foster honest give-and-take.

“You’ve created a transparent environment where they are going to be motivated to tell you the truth because they don’t want to get caught in a lie,” she said. “And that totally changes the dynamics.”

It is yet to be seen how technology will evolve to help patients share or withhold their secrets. But what will not change is a doctor’s need for full, open communication with patients.

“It has to be personal,” Tierney says. “I have to get to know that patient deeply if I want to understand what’s the right decision for them.”

by Tia Ghose

For Martijn Schirp, it’s a way to make an ordinary day just a little bit better.

A former poker player and recent graduate in interdisciplinary science in Amsterdam, Schirp has been experimenting with a new way to take psychedelic drugs: Called microdosing, it involves routinely taking a small fraction of a normal dose of lysergic acid diethylamide (LSD) or magic mushrooms.

Microdosing has gained a cult following amongst a small group of hallucinogen enthusiasts like Schirp, who now writes at HighExistence.com. Proponents report improvements in perception, mood and focus, minus the trippy tangerine trees and marmalade skies normally associated with psychedelics.

Schirp said he prefers to microdose when he’s immersed in creative or contemplative activities, such as writing, painting, meditating or doing yoga.

“It’s like the coffee to wake up the mind-body connection. When I notice it is working, depending on the dosage, time seems to be slowing down a bit, everything seems covered with a layer of extra significance,” Schirp told Live Science in an email.

Given his positive experiences with higher doses of psychedelics, “microdosing offered a way to get a taste of this without [the experience] completely overwhelming me,” Schirp said.

But while the effects Schirp and others describe are plausible from a physiological perspective, microdosing is uncharted territory, said Matt Johnson, a psychologist at Johns Hopkins University in Baltimore, Maryland, who has studied the behavioral effects of psychedelic drugs. Scientists have yet to run a clinical trial to assess the effects (or lack thereof) of microdosing. Johnson added that taking a smaller dose of a psychedelic is safer than taking a large dose, but the way people tend to do it — regularly taking small doses every several days — could have long-term side effects.

Just a little bit

The idea of taking small doses of psychedelics has been around for a while. The inventor of LSD, Albert Hofmann, was known to microdose in his old age and told a friend that microdosing was an under-researched area. But microdosing gained greater visibility when James Fadiman, a psychologist and researcher at Sofia University in Palo Alto, California, described it in his book “The Psychedelic Explorer’s Guide” (Park Street Press, 2011).

Since then, Fadiman has received about 50 anecdotal reports from microdosers around the world. Most report positive, barely perceptible shifts while microdosing, Fadiman said.

“What people say is that whatever they’re doing, they seem to be doing it a little better,” Fadiman told Live Science. “They’re a little kinder, a little bit nicer with their kids.”

People with creative jobs report improved focus and an ability to enter the state of flow more easily. Some report a desire to eat healthier or start meditating, Fadiman said.

“It’s like they tend to live a little better,” Fadiman said.

Still others report taking the teeny doses of psychedelics for psychiatric conditions, said Brad Burge, the director of marketing and communications at Multidisciplinary Association for Psychedelic Studies in Santa Cruz, California, where scientists study the effect of psychedelics on medical conditions such as PTSD.

“I’ve heard anecdotally of people using it for depression, seasonal affective disorder, anxiety, OCD [obsessive compulsive disorder],” Burge told Live Science. “With microdoses, the point would be to create subtle changes in people’s psychopharmacology or experience, in much the same way as most traditional pharmaceuticals are used now.”

Plausible mechanism, no evidence

The effects people report with microdoses of LSD, psilocybin, DMT or other “classic” psychedelics aren’t completely implausible, Johnson said. All of these drugs work by activating a particular receptor in the brain known as the serotonin 5HT-2A receptor. This receptor fuels the release of the “feel-good” brain chemical, serotonin, which creates a domino effect in the brain that leads to many other brain changes.

At high doses, these drugs temporarily, but radically, reshape brain networks; for instance, one study found that magic mushrooms create a hyperconnected brain. But antidepressants like Prozac also target serotonin receptors, so it’s possible that a low, constant dose of a psychedelic might work in a similar manner, Johnson said.

Still, there’s absolutely no evidence to suggest microdosing works as people claim it does, Johnson said. The effects described are so subtle — on par with having the caffeine in a cup of coffee — that they “fall within that category of barely perceptible, and it’s right in the range where people can so easily fool themselves,” Johnson told Live Science. That means microdosing is particularly susceptible to the placebo effect, in which people taking a sugar pill who believe they’re taking a drug report perceptible effects, he said.

To prove that microdosing has an effect, psychedelics researchers would need to do a double-blind study, in which neither the people administering the drug nor the recipients know whether a particular participant is getting a microdose of a psychedelic or something inert, like a little sugar dissolved in water, Johnson said. Some groups of people are allegedly doing these trials — but because LSD is illegal, and is only approved for research use in a few small trials in a few locations, all of these people are off the grid and not publicizing their efforts, Fadiman said.

Unknown side effects

What’s more, microdosing could have side effects, Johnson said. The few microscopic grains of LSD — just 10 micrograms — typically used to microdose are too tiny to measure even on a professional laboratory scale, Johnson said. To get around this, people who microdose typically take a blotter paper laced with one hit of LSD, soak it in water and then drink some of the water. But since LSD is an illegal substance procured on the black market, there’s really no way to know exactly what you’re getting, Johnson said.

Even in the lab, with carefully measured doses of drugs administered in a controlled environment, Johnson has found substantial variation in the way that people react to the same dose. Combined, those two uncertainties mean people may not be able to reliably microdose, he said.

“Someone might be expecting a kind of sparkly day, just a really productive day at work — and next thing you know, they’re grasping hold to their office chair wondering why the world is dissolving,” Johnson said.

Schirp, for instance, has occasionally had negative microdosing experiences.

“At times, the experience was still too overwhelming to be productive — I just wanted to lay down or take a walk,” Schirp said.

Beyond that possible experience, the long-term risks of the drug are unknown. The risk of taking a single, tiny dose of LSD or psilocybin is going to be smaller than the risk of taking one big hit, Johnson said. But even the most dedicated psychonauts don’t typically trip daily or even weekly, Johnson said. By contrast, people who are microdosing report using the drugs every three or four days, he said.

Such frequent use could have unknown, long-term side effects, he said.

“You’re tinkering with the system that is involved with depressive systems, but in unexplored ways,” Johnson said.

http://www.livescience.com/51482-more-people-microdosing-psychedelic-drugs.html


Marta Orellana was experimented on when she was nine. Photograph: Rory Carroll/Guardian

Lawsuit with 800 plaintiffs seeks damages for individuals, spouses and children of people deliberately infected with STDs through US government program.

Nearly 800 plaintiffs have launched a billion-dollar lawsuit against Johns Hopkins University over its alleged role in the deliberate infection of hundreds of vulnerable Guatemalans with sexually transmitted diseases, including syphilis and gonorrhea, during a medical experiment program in the 1940s and 1950s.

The lawsuit, which also names the philanthropic Rockefeller Foundation, alleges that both institutions helped “design, support, encourage and finance” the experiments by employing scientists and physicians involved in the tests, which were designed to ascertain if penicillin could prevent the diseases.

Researchers at Johns Hopkins School of Medicine held “substantial influence” over the commissioning of the research program by dominating panels that approved federal funding for the research, the suit claims.

The lawsuit asserts that a researcher paid by the Rockefeller Foundation was assigned to the experiments, which he travelled to inspect on at least six occasions.

The suit also claims that predecessor companies of the pharmaceutical giant Bristol-Myers Squibb supplied penicillin for use in the experiments, which they knew to be both secretive and non-consensual.

The experiments, which occurred between 1945 and 1956, were kept secret until they were discovered in 2010 by a college professor, Susan Reverby. The program published no findings and did not inform Guatemalans who were infected of the consequences of their participation, nor did it provide them with follow up medical care or inform them of ways to prevent the infections spreading, the lawsuit states.

Orphans, prisoners and mental health patients were deliberately infected in the experiments.

The plaintiffs’ case quotes the correspondence from one of the program’s lead researchers who tells another doctor that if it were discovered by “some goody organization” that the program was testing people who were mentally ill it would “raise a lot of smoke”. The manager continues: “I see no reason to say where the work was done and the type of volunteer.”

Baltimore-based attorney for the plaintiffs Paul Bekman told the Guardian that of the 774 claimants, about 60 were direct survivors of the program. Many have died as a result of deliberate infection and others had passed on disease to family members and partners.

“The people who are responsible [for carrying out the research] now are long dead,” said Bekman “But the records are there, and we have detailed documentation that supports the allegations in our complaint.”

Marta Orellana was a nine-year-old orphan when she was included in the experiments. In an interview with the Guardian in 2011 she recalled being forcibly examined by light-complexioned foreigners and a Guatemalan doctor in the orphanage infirmary.

“They never told me what they were doing, never gave me a chance to say no,” Orellana said. “I’ve lived almost my whole life without knowing the truth. May God forgive them.”

Included within the legal claim are graphic descriptions of some of the methods used by the researchers to infect their subjects:

During the experiments, the following occurred:
1.Prostitutes were infected with venereal disease and then provided for sex to subjects for intentional transmission of the disease;
2.Subjects were inoculated by injection of syphilis spirochaetes into the spinal fluid that bathes the brain and spinal cord, under the skin, and on mucous membranes;
3.An emulsion containing syphilis or gonorrhoea was spread under the foreskin of the penis in male subjects;
4.The penis of male subjects was scraped and scarified and then coated with the emulsion containing syphilis or gonorrhea;
5.A woman from the psychiatric hospital was injected with syphilis, developed skin lesions and wasting, and then had gonorrhoeal pus from a male subject injected into both of her eyes and;
6.Children were subjected to blood studies to check for the presence of venereal disease.

The then secretary of state Hillary Clinton apologised for the programme in 2010 after a presidential bioethics commission investigation found the experiments “involved unconscionable basic violations of ethics”.

A federal lawsuit for damages under the Federal Tort Claims Act failed in 2012 after a judge determined the US government cannot be held liable for actions outside the US. Bekman told the Guardian he believed the new lawsuit stood a greater chance of success as it was lodged in the state court of Maryland and against private entities.

Both Johns Hopkins University and the Rockefeller Foundation have vigorously denied any involvement in the experiments.

A spokeswoman for Johns Hopkins School of Medicine said the institute expressed “profound sympathy” for the victims of the experiments and their families, but added: “Johns Hopkins did not initiate, pay for, direct of conduct the study in Guatemala. No nonprofit university or hospital has ever been held liable for a study conducted by the US government.”

The university stated it would “vigorously defend” the lawsuit.

The Rockefeller Foundation issued a detailed response to the claim online, which it described as seeking to “improperly to assign ‘guilt by association’ in the absence of compensation from the United States federal government”.

The statement continued: “In the absence of a connection to the Rockefeller Foundation, the lawsuit attempts to connect the Foundation to the experiments through misleading characterizations of relationships between the Foundation and individuals who were in some way associated with the experiments.”

A spokeswoman for Bristol-Myers Squibb declined to comment.

http://www.theguardian.com/us-news/2015/apr/02/johns-hopkins-lawsuit-deliberate-std-infections-guatemala

Thank to Kebmodee.