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The Limits of Google: How Patients Can Find Out What Works In Medical Care  
When you feel sick, even before you go to the doctor, where do you look for information? Many go to Google or other search engines, but that information isn't always reliable. Besides, it is often downright scary. And how can anyone trust TV advertisements that promise fields of flowers and happiness to anyone who takes the medication, all while a dispassionate voice-over lists terrible side effects.

We are all supposed to be "engaged patients". We are supposed to research our symptoms and diagnoses. But "patient engagement" is one of the most overused and least understood terms in health care discussions today. Everyone talks about the need for it, but few know how to really use patient input. Some doctors welcome an informed patient; others not so much. Some organizations will put one patient on their board or advisory committee and consider patient engagement done.

As someone who has served as a consumer representative on boards that evaluate new treatments, I can tell you that patient engagement is critically important to assessing what really works in terms of treatment and care, and what research is needed to inform decision making.

Yet few opportunities for this exist.

In fact, special interests and those frightened of change, are challenging evidence-based efforts to evaluate health care system innovations and high-cost drug treatments. Instead of fighting these efforts, they should be demanding more of them and insist that patient voices are part of the discussion.

You may have heard that less than 20% of what physicians do has solid medical research to support it. That's kind of astounding when you think about it. Doctors do something because that's the way they were trained to do it, and until new information comes to light, they will continue to do it the same way. Take the treatment for ear infections in kids. Doctors prescribe or parents demand tubes, antibiotics, anything to stop the pain. But good research shows that too many antibiotics have negative outcomes. As a result, treatment for ear infections has changed appropriately over the past several years. Same for tonsillectomies, the third most frequent surgery for children.

Fortunately for patients, there are two places where their voices will be heard and where they can find good, evidence-based information. One is a non-governmental nonprofit program called PCORI (Patient-Centered Outcomes Research Institute); the other is a nonprofit called ICER (Institute for Clinical and Economic Review). PCORI was funded in 2010 by the federal government as part of the Affordable Care Act (one of the many aspects of "Obamacare" most don't know about). The Institute's money comes from the government and fees assessed to private insurance and self-insured employer-based plans, but PCORI is completely independent and conducts its business in public. PCORI's mission is "to help people make informed healthcare decisions, and improve healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community." PCORI meetings are public and patients are heavily involved in deciding what research should be done and by whom. PCORI's research has included how to best manage side effects of cancer treatment, how to help people recover from strokes more rapidly, and how to pull specialists together to more effectively treat lung cancer. These research projects were all selected and guided by patient input.

Patient voices are also being sought in the evaluation of drugs for conditions like diabetes, multiple sclerosis, high cholesterol, or psoriasis. Many of these drugs are advertised constantly on TV with little helpful information for patients about which of the side effects is most prevalent or serious, how effective the drug is or how much it costs. ICER provides this information. Seventy percent of ICER's funding comes from nonprofit foundations (70%) with the remaining coming from life science companies and health insurance companies. ICER is "dedicated to improving patient care by providing independent, completely transparent evaluations of how new drugs compare to existing treatments". ICER differs from the FDA by looking at the cost of treatments as well as their effectiveness in two ways - in comparison to no treatment (as the FDA does) and in comparison to existing treatments (as the FDA does not do). This is helpful for patients making their decisions when their insurance does not cover the drug or when deductibles or coinsurance may be very high.

ICER works through three independent review bodies of practicing physicians, methodology experts and patient advocates that meet three times a year in New England, the Midwest and California to look at the evidence for the effectiveness of new treatments or drugs. I was a consumer member of the California panel, CTAF (California Technology Assessment Forum) for many years, so I know how challenging it is to integrate a non-clinical voice in the decision-making. The issues are complex and the information is often incomplete or highly technical. However, patients or consumers can bring a practical focus to the discussion, especially when we try to define terms such as "quality of life" or question the value of a drug that costs hundreds of thousands of dollars and extends life by only a few weeks.

PCORI and ICER are great resources for patients and their providers. The reports they issue are more reliable than what any internet search can provide. ICER is the only independent national resource that offers credible information about the real elephant in the room--the cost of a new drug, particularly as it compares to existing drugs for the same condition. And ICER involves patients in making those determinations.

ICER's process first assesses how well a drug works, the side effects it produces, and how it compares to similar drugs and treatments. Only after this analysis does ICER look at cost. Will a medication reduce future costs by keeping you healthier? Does it offer benefits that no other medication on the market can? Or will it lead to escalating and unsustainable costs for you and for the entire health care system to the point where no one will be available to afford the innovative treatment? For example, ICER recently issued a report that concluded that Entresto™ does offer excellent long term value to treat patients with Congestive Heart Failure. Some payers were concerned that the drug was too expensive and so were hesitant to approve it. The ICER report found that its price, when normal discounts were factored in, represented a good value. This report increased the likelihood that patients who might benefit from the drug will have it covered by their insurance.

ICER calculates a fair benchmark price to the manufacturer, the payer, the patient and the overall health system, so that these decisions can be made collaboratively in full view of you, the patient. These decisions have always been made behind closed doors, so the fact that cost is being addressed and discussed openly provides patients with a significant advantage.

Still, when it comes to considering costs, some patient advocacy groups get nervous when the subject comes up. I would not be fair if I did not address some of the key questions many patient advocates worry about, perhaps the biggest one being "will the consideration of cost mean I lose access to a drug or treatment I need?"

1. Why should cost be considered if a drug can significantly improve my health? The most important question you should ask is whether or not a treatment or drug actually works for your individual condition. But the cost of that treatment is also important. You may have a very high deductible to pay, and if the treatment is of questionable effectiveness, that cost factor may be very important in your decision making process. Looked at more broadly, it would be irresponsible for a physician to recommend treatments without any assessment of value or the budget impact over the long-term. Is the cost so high that it will strain state health budgets, force cutbacks in other community services or generate unaffordable increases in insurance premiums?

1. How much influence do the drug manufacturers or insurance companies have over decisions made by PCORI and ICER? PCORI's Board of Directors is selected by the Comptroller General of the United States and is mandated to include at least three patient representatives, along with physicians, researchers, and insurance companies and other payers. ICER's Governance Board has fiduciary responsibility for the overall operations of ICER, and provides important strategic counsel to ICER's leadership team. The Governance Board represent a broad range of stakeholder perspectives, including patient and consumer groups, health plans, manufacturers, and other national leaders in health policy. In fact, two new members were recently elected to ICER's Governance Board - Ellen Andrews, PhD and Frances Visco, JD. Both have extensive experience in patient and consumer advocacy.

1. Don't insurance companies dominate these organizations? Actually, insurers are not in the majority of decision making of either organization. They are at the table because they have a huge stake in deciding what to pay for, since they must distribute resources fairly to all patients who are members. Researchers and medical personnel are much more heavily represented on these boards and panels, because the complexity of research design is something that even insurance companies don't always understand. And ICER seeks direct input from patients and clinicians on what they feel is important to their care, what outcomes they seek, and what evidence should be assessed. For example, multiple myeloma patient groups told ICER that it was very important to them to have options for oral medication given how often they have to go to clinics for IV administration.

1. If drug prices are questioned, will that stall innovation? Innovation is essential to improving patient health. We are fortunate to have a drug manufacturing industry that is producing a burgeoning pipeline of new promising drugs for a range of medical conditions. But many of these drugs are landing on the market with hefty price tags that are out of range for many people. There is no point to innovation if no one can afford the new drugs or benefits that they offer.

1. Why do we need a PCORI or ICER anyway? Most patients would not want to take a drug if they didn't know it worked, yet we do it all the time. The FDA assesses drugs for safety but does not compare one drug to another or look at the cost of a drug. We need organizations that are objective, not dominated by one type of stakeholder or another, and that operate in an open environment where patients can voice their preferences and ask questions.

Bottom line? An internet search can get you started when you need information. But as a patient, you need to know that there are places you can trust to give you the whole story. The more organizations like PCORI and ICER that we have, the faster we will get to a place in medicine that gives us information we can depend on.

-- This feed and its contents are the property of The Huffington Post, and use is subject to our terms. It may be used for personal consumption, but may not be distributed on a website.

 
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Human relationships with rocks, trees and other sentient beings | Letter from Dr Penelope Dransart  

Paul Kingsnorth urges us to follow the poet Robinson Jeffers in “unhumanising” our views, to open our (human) minds “from ourselves” (The call of the wild, Review, 23 July). He presents an inspiring list of novels to help us to acknowledge the sentience of other beings. Many ethnographers also help us to gain precious insight into other ways of thinking. From the 1930s Alfred Irving Hallowell adopted the phrase “other-than-human persons” in his exploration of relationships between entities such as rocks and humans among the Northern Ojibwe (Canada) and how these sentient others reveal themselves to people. More recently, Eduardo Viveiros de Castro has been urging us to exchange perspectives not only with other human beings whose intellectual traditions differ from the “artifact[s] of western individualism” discussed by Kingsnorth but also with other sentient beings of the cosmos. In what he calls perspectival multinaturalism, Viveiros de Castro argues there is no one undifferentiated state of “nature” as western orthodoxy would have it. Eduardo Kohn's How Forests Think is an example of an ethnography that dissolves human and non-human categories. He set himself the task of understanding the existence of forests as an emergent process in which human and non-human beings engage in making and communicating signs to each other.
Dr Penelope Dransart
Reader in anthropology and archaeology, University of Wales Trinity Saint David

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This Cube Shape-Shifts When Squished  
Metamaterials don't react the way you would expect. Push down on this cube from the top and a face appears on the side. The secret? A carefully designed substructure. This video was reproduced...

-- Read more on ScientificAmerican.com  
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John Dalton – Scientist of the Day John Dalton, the modern...  

John Dalton – Scientist of the Day

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The Science Behind Hillary Clinton's Problems With Trust  
By Jillian Jordan, Yale University and David Rand, Yale University

Large swaths of the American public want Donald J. Trump to be their president - maybe even a majority, according to an analysis from Nate Silver's FiveThirtyEight in late July.

Many people - Democrats and Republicans alike - find this shocking.

Trump made his name as the "You're fired" guy. He has never held political office, has arguably failed to generate concrete or realistic policy proposals, regularly changes his positions on issues and consistently gets the facts wrong.

This stands in sharp contrast to Hillary Clinton, who has served as secretary of state, senator from New York and first lady of the United States. In his endorsement of her, Barack Obama described Clinton as the most qualified presidential nominee in U.S. history. Presumably experience with, and knowledge of, the system and issues are qualities that make for a good president - so why is this race even close?

How to build trust

Research, including new work from our Human Cooperation Laboratory at Yale, suggests Trump may be successful precisely because of his hotheadedness and lack of carefully thought-out proposals. Being seen as uncalculating can make people trust you.

Hillary Clinton is the opposite of hotheaded. She is careful and calculating - which, despite being a strong asset in actually carrying out the duties of public office, has become a liability in her presidential campaign by undermining the public's trust in her.

In a recent paper, we found that if you take an action that people like, you come off as much more trustworthy if you decide to act without doing a careful cost-benefit analysis first: Individuals who calculate seem liable to sell out when the price is right.

What's more, the desire to appear trustworthy motivated participants to act without too much forethought.

Our research didn't focus on perceptions of politicians, but rather looked at behavior in a more abstract context. We conducted a series of experiments involving economic decisions between anonymous strangers on the internet. Our goal was to create a scenario that would capture the classic trade-off between self-interest and helping others. This is something that comes up in a lot in politics, but also in all sorts of social interactions, such as in our relationships with friends, coworkers and lovers.

Our experiments occur in two stages, with participants assigned to specific roles.

In the Helping Game stage, "Helpers" are given some money and have the opportunity to give some of it away to benefit another participant.

The second participant is a total stranger who is assigned to the "Recipient" role, and not given any money.

Helpers know that helping the Recipient out will come at a cost - sacrificing a predetermined, but undisclosed, amount of money.

We then give Helpers a choice. They can decide whether to help the Recipient without "looking" at the cost (i.e., without knowing how much money they'll be giving away). Or, they can choose to find out how much money they'll be giving away and only then decide whether to help.

Next, in the Trust Game stage, Helpers engage in a new interaction with a third participant. This person is called the "Truster." The Truster learns about how the Helper behaved in the first interaction, and then uses it to decide how much the Helper can be trusted.

To measure trust, we give the Truster 30 cents. He then chooses how much to keep and how much to "invest" in the Helper.

Any money he invests gets tripled and given to the Helper. The Helper then chooses how to divide the proceeds of the investment.

Under these rules, investing is productive, because it makes the pot grow larger. But investing pays off for the Truster only if the Helper is trustworthy, and returns enough money to make the Truster a profit.

For example, if the Truster invests all 30 cents, that amount is tripled and the Helper gets 90 cents. If the Helper is trustworthy and returns half, they both end up with 45 cents: more than the Truster started with.

However, the Helper may decide to keep all 90 cents and return nothing. In this case, the Truster ends up with zero and is worse off than when he started.

So the Truster bases his decision of how much to invest in the Helper on how trustworthy he thinks the she will be in the face of a temptation to be selfish - that is, how much he trusts her.

We found that Helpers who agree to help the Recipient without "looking" at the cost are trusted more by Trusters. Moreover, they really are more trustworthy. These "uncalculating Helpers" actually return more money to Trusters in the face of the temptation to keep it all for themselves.

Somebody is watching you

We also found that Helpers are motivated by concerns about their reputation.

For half of participants, there were reputational consequences of calculating: The Truster was told whether the Helper looked at the cost before deciding whether to help - and thus Helpers could lose "trust points" by calculating. For the other half of participants, Trusters found out only whether Helpers helped, but not whether they looked at the cost. Our results showed that Helpers were less likely to look at the cost when they knew it would have reputational consequences.

This result suggests that people do not make uncalculating decisions only because they cannot be bothered to put in the effort to calculate. Whether this strategy is conscious or not, uncalculating decisions can also be a way to signal to others that you can be trusted.

Uncalculating cooperation in daily life

Our studies demonstrate that there are reputation benefits to seeming principled and uncalculating.

This conclusion likely applies broadly to social relationships with friends, colleagues, neighbors and lovers. For example, it may shed light on why a good friend is someone who helps you out, no questions asked - and not someone who carefully tracks favors and remembers exactly how much you owe.

It may also reveal an unexpected reason for the popularity of rigid ethical guidelines in philosophical and religious traditions. Committing to standards like the golden rule can make you more popular.

To trust Trump or Clinton?

Our studies may also help to shed light on Trump's appeal. One of his greatest advantages appears to be the authenticity that he conveys with his emotionally charged behavior.

But it's important to understand uncalculated decisions will benefit your reputation only if the actions you end up taking are perceived positively. In our experiments, Helpers who decided not to help without calculating the costs seemed especially untrustworthy - presumably because they seemed committed to be selfish no matter what. Similarly, Trump's impulsiveness may be a plus for those people who support his values, but a huge turnoff to those who do not.

In contrast, Clinton's persona is often unattractive even to those who support her values - because it suggests that she may not stand by those values when the cost is too high. This may shed light on why she does not inspire more enthusiasm among some liberals, despite her experience and progressive record.

However, there's an important nuance to what it means to be "calculating." One sense of "calculating" is self-interested: Before you agree to adhere to your ethical principles, or to sacrifice for others, you consider the costs and benefits to yourself - and you follow through with doing the "right" thing only if you conclude that it will be best for you.

Another way to be "calculating" is to carefully consider what's right for others. Instead of acting on her gut, a policymaker could conduct a complex analysis to figure out the best way to implement a policy to maximize its benefit to the population.

Our theory and experiments apply only to the first sense of "calculating": They suggest that engaging in self-interested calculations is what undermines trust.

But in what sense is Trump uncalculating - and in what sense is Clinton calculating?

Of course, there's room for debate, but a common argument in support of Clinton is that her calculations reflect her ability to effectively play the game to deliver the most progressive policies possible, given the constraints of our two-party system.

To win, Clinton needs to convince voters that her calculations have their best interests at heart - a major goal of this week's Democratic National Convention.

Jillian Jordan, Ph.D. Candidate in Psychology, Yale University and David Rand, Associate Professor of Psychology, Economics, Cognitive Science and Management, Yale University

This article was originally published on The Conversation. Read the original article.

-- This feed and its contents are the property of The Huffington Post, and use is subject to our terms. It may be used for personal consumption, but may not be distributed on a website.

 
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Grism  

Full Text:

A volume phase holographic grism, a combination of a diffraction grating and a prism. This grism combines a grating from Kaiser Optical Systems Inc. with prism wedges from Janos Technology Inc. and was assembled at the National Optical Astronomy Observatory (NOAO) by Al Camacho and Heidi Yarborough. It is used in the new Multi-Aperture Red Spectrometer (MARS, which is CryoCam resurrected).

Image credit: NOAO/AURA/NSF

 
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Count seals in Antarctica from the comfort of your couch  

Full Text:

Scientists are asking the public to look through thousands of satellite images of Antarctica to assist in the first-ever, comprehensive count of Weddell seals. Counting seals will help scientists better protect and conserve the pristine Ross Sea and wildlife in the area. Weddell seals are important to the Southern Ocean ecosystem and have been studied since the early 1900s. However, no one has been able to do a comprehensive count of the seals due to the harsh Antarctic weather and remote locations in which the seals live. Now, high-resolution satellite images provide a solution—counting seals on satellite images—but there are too many images for scientists to handle alone. The citizen science project, called Satellites Over Seals (SOS), focuses on about 300 miles of Antarctic coastline along the Ross Sea. Anyone can view the satellite images online from anywhere in the world and help with the count. Crowdsourcing research in this way allows researchers to efficiently and effectively comb through large amounts of data using the public's help.

Image credit: Michelle LaRue, University of Minnesota

 
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