How Feedback Biases Give Ineffective Medical Treatments a Good Reputation

We propose the following explanation. Irrespective of effectiveness, medical treatments typically result in a distribution of outcomes with some people improving, some deteriorating, and others experiencing little change. Suppose that the people who have more positive outcomes are more inclined to tell other people about their experience of the treatment than people who have poorer outcomes. This may occur because people recall their successes better than their failures, because people believe others’ success stories, or because people are embarrassed to have adopted an ineffective treatment. Whatever the cause, such a bias would systematically distort the information available to other naive individuals who are seeking an effective treatment—the reputation of a treatment will exceed its real effect. This hypothesis is assessed using a variety of methods. First, we compared clinical data on weight loss diets with weight loss reported in reviews of books on these diets. Reviews were taken from Amazon, a popular online marketplace where consumers can post reviews of products. We also made a similar comparison for unproven fertility treatments based on herbs and vitamins. In both cases, we predicted that people with positive outcomes are more inclined to post reviews. In a series of experimental studies, we then tested whether the bias of such reviews is sufficient to influence preferences for treatments. We predicted a preference for weight loss diets accompanied by typical reviews (as sampled from Amazon) over diets accompanied by undistorted reviews (ie, reviews that are representative of the diet’s true effect obtained by purposefully sampling and/or editing of the review). Finally, we used a mathematical model to explore some implications of such reputational distortion.

Originally Published in JMIR

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Apple Updates Privacy Policy for Health Apps, Report Says

In yet another sign that the launch of Apple's long-rumored iWatch may be imminent, the company has reportedly updated its privacy policy for how health apps handle user data. Apple recently changed its guidelines for developers who wants to take advantage of its HealthKit framework, according to the Financial Times. HealthKit, which will debut alongside iOS 8, serves as a hub for health data collected by third-party fitness and health-tracking apps. That information will then be funneled into Apple's Health App, which will analyze the data, and break it down into easily digestible formats. The new rules state that developers can't "sell an end-user’s health information collected through the HealthKit API to advertising platforms, data brokers or information resellers," developers can't "sell an end-user’s health information collected through the HealthKit API to advertising platforms, data brokers or information resellers," according to the report. What's more, developers cannot use HealthKit's API or its information “for any purpose other than providing health and/or fitness services."

Originally published in Mashable

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Jawbone UP data shows how many woke up during the Napa earthquake

The 6.0-magnitude earthquake that struck the Napa region of Northern California on Sunday was the strongest the area has seen in 25 years.

The quake was so strong, in fact, that it woke many in the region — as we learned from a sudden change in the sleeping patterns of people nearby, thanks to data collected by Jawbone UP fitness trackers.


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via Mashable

Patient Monitoring, Big Data, and the Future of Healthcare

I’m pretty sure that when you read the word “patient” in the headline of this article, your first thought was about sick rather than healthy people. A patient in the healthcare sector, however, is like a consumer in the retail sector — both healthy and sick patients purchase goods and services. A healthy patient is the desired goal of doctors. Elizabeth Dwoskin and Joseph Walker report that doctors are studying the use of wearable devices to determine whether monitoring patient activity can help make patients healthier.

Link to full article here.
via Wired.com

Penn undergrads develop wireless thermometer: Life Patch

When Collin Hill was 19, he was diagnosed with Hodgkin’s lymphoma.

During his first semester at Penn, he’d travel to New York City every other weekend to undergo chemotherapy. Chemotherapy weakens your immune system, so every night, he’d have to monitor his temperature to make sure he wasn't running a fever. Sometimes he’d wake up with a 104-degree fever and have to be rushed to the ER.

Two years later, Hill, a native of Greenwich, Conn., is in remission. But he was frustrated that there was no way he could keep track of his temperature throughout the night and get alerts when it was rising. So, along with a team of Penn students, he developed a wireless thermometer that could do just that.

Via Technically Philly

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What's behind the challenge

By now, most people have seen friends or celebrities pour buckets of ice water over their heads as part of the "ice bucket challenge" for amyotrophic lateral sclerosis (ALS), the neurodegenerative condition also known as Lou Gehrig's disease.

This behavior has gone viral and taken over Facebook to an extent rarely achieved by health-care topics. Reflecting on why is important, because health systems working on topics ranging from colorectal screening to vaccinations have much to learn from this campaign.

via Philly.com

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What an Introvert Sounds Like

Do our Facebook posts reflect our true personalities? Incrementally, probably not. But in aggregate, the things we say on social media paint a fairly accurate portrait of our inner selves. A team of University of Pennsylvania scientists is using Facebook status updates to find commonalities in the words used by different ages, genders, and even psyches.

The so-called “World Well-Being Project” started as an effort to gauge happiness across various states and communities.

“Governments have an increased interest in measuring not just economic outcomes but other aspects of well-being,” said Andrew Schwartz, a UPenn computer scientist who works on the project. “But it's very difficult to study well-being at a large scale. It costs a lot of money to administer surveys to see how people are doing in certain areas. Social media can help with that.”

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Via The Atlantic

How wearable cameras can help those with Alzheimer's

Some people hang out with their friends on yachts or play pool with pretty girls. Others like to go on treetop zip-wire adventures and holiday on wooded Thai islands. These examples of images on the websites of Autographer and Narrative Clip, two leading wearable cameras, reveal the kind of things their makers imagine we might do with their devices.

These gadgets automatically snap hundreds of photos per day from their user's perspective. The much-awaited Google Glass, expected to go on general sale within months, will be able to do the same thing. Some believe future historians will peg 2014 as the dawn of the "life-logging" era, in which many or even most of us will carry devices that record images or video of our daily lives.

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Via The Guardian

When Patients Read What Their Doctors Write

The woman was sitting on a gurney in the emergency room, and I was facing her, typing. I had just written about her abdominal pain when she posed a question I'd never been asked before: "May I take a look at what you're writing?"

At the time, I was a fourth-year medical resident in Boston. In our ER, doctors routinely typed visit notes, placed orders and checked past records while we were in patients' rooms. To maintain at least some eye contact, we faced our patients, with the computer between us.

But there was no reason why we couldn't be on the same side of the computer screen. I sat down next to her and showed her what I was typing. She began pointing out changes. She'd said that her pain had started three weeks ago, not last week. Her chart mentioned alcohol abuse in the past; she admitted that she was under a lot of stress and had returned to heavy drinking a couple of months ago.

via NPR.

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Strangers Diagnose Your Illness and Get Cash in Return

The website CrowdMed lets you outsource your medical diagnoses to users competing for points and cash. Is it the solution to online hypochondria, or part of the problem?  The Internet has only a few unspoken rules, but they’re best followed closely: Don’t post lewd photos with your face showing. Think twice before tweeting a bawdy joke. And no matter how strong your constitution, never seek medical advice online.

The third rule reads like a platitude, but it’s remarkably true. The Internet has a tendency to magnify even the most mundane bumps and bruises, transforming toothaches into oral cancer and fleeting cramps into tetanus. Online diagnoses are delivered hyperbolically and without a shred of bedside manner.

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Via The Daily Beast

Getting Social Without the Networking: Enhancing Relatedness

In a previous entry, I talked about how engaging people in technology requires supporting their basic needs of competence, autonomy, and relatedness. This is all described by the Self-Determination Theory of motivation. I’ve found working in health care technology that of these three needs, it can be most challenging to support people’s feelings of relatedness. The reasons why are varied. One reason is that the most obvious solution to supporting relatedness, social media, is difficult to implement meaningfully in a health intervention. It’s not enough to simply give people a forum to share information; doing so must provide them with some sort of benefit, be it advice on working toward a goal, encouragement from others, or a challenge to try a new approach.

Originally Published in Wired

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Hospital blasted over plans to give patients iPads

A NHS trust has been criticised for a plan to install iPads into operating theatres, allowing patients to watch movies, play chess or check their emails while being operated on.

The pilot scheme, which could be rolled out across 46 operating theatres in the Oxford University Hospitals NHS Trust, could cost taxpayers more than £18,000 if funded by the NHS.

In a pilot trial, patients at Nuffield Orthopaedic Centre in Oxford have watched their favourite films, surfed the net and checked their emails during 10 hour local anaesthetic surgeries.

The pilot scheme is hoped to help distract people from often lengthy regional anaesthetic surgery, which requires absolute stillness.

However, Dia Chakravarty, political director at The Taxpayers' Alliance, said: 'Taxpayers will wonder if this really is the best use of their money when necessary savings are having to be made across the public sector.

'People expect their taxes to pay for doctors and cancer drugs.

Link to the article

Originally published in the DailyMail

Crowdsourcing and Social Media in Times of Crisis

In a recent talk to the SUMR scholars, Dr. Raina Merchant described her work in the Penn Social Media and Health Innovation Lab. One project involved a crowdsourcing challenge in which people sent pictures and the location of Automated External Defibrillators (AEDs) in the city of Philadelphia. The Health Innovation Lab used this information to map the AEDs, and by increasing the community’s awareness of their use and availability, they expect to increase AEDs effectiveness in saving lives.

It was inevitable for me to relate this experience to what happens daily in Venezuela, my home country, where in the face of a growing health care crisis people rely on social media to find antiretroviral drugs for HIV patients, oral chemotherapy for cancer patients, and even basic supplies like gauze, gloves, analgesics and reactive chemicals for lab tests.

Full article 

Via Penn LDI's SUMR Times Blog

Is there no Facebook for crowdfunding? Can niche crowdfunders beat the big ones?

Recently, crowdfunding reviews site CrowdsUnite ranked the top 10 crowdfunding platforms based on user reviews. Interestingly, Kickstarter, the most well-known crowdfunding site, ranked fifth, behind YouCaring, Pubslush, Seed&Spark, and GiveForward.

While you may be shocked to hear that Kickstarter ranks so low, a closer look at the statistics reveals that Kickstarter may not be the best platform for all projects.

Users ranked YouCaring, a donation-based crowdfunding platform above Kickstarter. One possible reason why Kickstarter was ranked lower is the discrepancy in fees. While Kickstarter charges a 5% fee on a successful campaign, there is no charge to running a campaign on YouCaring. One user wrote, “We love that 100% of the donation goes to us.”

via MedCity news.

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When Wearable Health Trackers Meet Your Doctor

How interested is your doctor in health data that you’ve tracked yourself?

Wearable health and fitness devices are now hugely popular, and they certainly appeal to people who want to tot up their paces. But many people who have invested in trackers like the Fitbit, Jawbone’s UP bracelet, or the Nike+ FuelBand want to know: Can this data be used to give me more serious healthcare insight? Could it help my doctor to give me better advice?

There’s certainly going to be no shortage of raw data. With tech giants Google, Amazon and Samsung heavily committing to this space, ever more wearable health devices are going to be connected to your life. Samsung’s Galaxy S5 smartphone, for example, has a built-in heart-rate sensor, a pedometer feature, and the S Health app.

Apple, meanwhile, recently announced HealthKit, an expression of intent to take the tech war in health to the next level with a platform that, rather like the App Store, will support lots of independently created applications in tracking health and wellness.

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Originally published by TechCrunch

The Reluctantly Quantified Parent

We started tracking sleep using a pen and a notebook—a notebook I rediscovered a week ago on a shelf. Those early pages are something from a horror novel: The scrawled handwriting doesn't even look like ours and the basics of addition clearly eluded us. During one of the regular dark stretches I spent rocking the baby between 3 a.m. and 5 a.m., I found an iPhone app that promised to make it easier, and to sync across multiple devices so we wouldn't have to interrogate each other during each bleary wake-up to find out what had happened during the last round. By that point I was too focused on survival to care about the anxiety-producing qualities of parenting technologies. My one requirement was that the buttons be large enough to see with my eyes mostly closed. They were. Countless nights awake became counted—and weirdly, it helped. Seeing the unexaggerated insanity of our schedule made sense of our exhausted communication glitches and my inability to get through a day without sitting on the kitchen floor and crying. It didn't help much, but it was something.

Originally published in The Atlantic

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Vernacular Criticism: The most interesting place to read about museums is Yelp

“Boyfriend says that it’s a little silly to review a museum like PS1 because it has so many rotating pieces/exhibitions,” writes Yelp user Saskia S. in her five-star review of MoMA PS1, a contemporary art center in Queens. Boyfriend voices the status quo: Reviews of museums should reflect their rotating offerings, which means that the appearance of reviews should be metered by periodicals—the daily newspaper, the monthly ­magazine—whereas a Yelp review sits in online stasis, which is a little silly. Another subtext, which Boyfriend is perhaps too polite to say aloud, is that the high refinement of what museums do is best addressed by the professional critics who write for those periodicals, rather than Yelp users such as Saskia S.

Originally Published in The New Inquiry

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When Scientists, Social Media, and the Kardashians Collide

Normally, an article that cites Kim Kardashian's Wikipedia entry as a reference wouldn’t make it into a scientific journal. But last week, the journal Genome Biology published a commentary by genome scientist Neil Hall that did just that.

The paper, meant to be satirical, was titled “The Kardashian index: a measure of discrepant social media profile for scientists,” and it proposed a way of determining whether scientists on social media had more influence than their scientific renown would warrant. It proposed a measure called the K-index, which would compare a scientist's number of citations to his or her number of Twitter followers. Scientists who had more followers than citations would have a high K-index.

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Originally published by Smithsonian.com 

Patients Seeking Cheaper Care Are Soliciting Bids From Doctors Online

Francisco Velazco couldn't wait any longer.  For several years, the 35-year-old Seattle handyman had searched for an orthopedic surgeon who would reconstruct the torn ligament in his knee for a price he could afford. 

Out of work because of the pain and unable to scrape together $15,000 - the cheapest option he could find in Seattle- Velazco turned to an unconventional and controversial option: an online medical auction site called Medibid, which largely operates outside of the confines of traditional health insurance.

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Originally published by the Washington Post

Is That App FDA Approved? Mobile Health Tech Falls Into Gray Area

Personal health is becoming increasingly mobile, and there are now thousands of apps aiming to address everything from lifestyle issues to chronic diseases. But can you trust these apps the same way you trust your prescribed drugs and medical devices?

Medical devices are generally regulated by the U.S. Food and Drug Administration, and although the FDA reviews some apps, experts say the agency's power and efforts aren't nearly enough to cover the 97,000 and counting health apps out there that are transforming consumer health.

Via Mashable

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One Step To Combat Obesity: Make Stairs More Attractive

If there's a single invention that helped shape New York City, literally, it might be the elevator. Along with steel frame construction, the elevator allowed New York City to grow up.

But according to architect David Burney, former New York City commissioner of the Department of Design and Construction, it's time to celebrate the steps.

"There was a time before the elevator when the staircase was a huge opportunity for architects — three-dimensional space, the sculptural quality of the stair," Burney says. "So we'd like to bring the staircase back."

Why the enthusiasm for the stairs? The answer is more medical than architectural. This is a public health campaign.

via NPR.

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Big Data Is Overrated

Today, we live in a world of data. Twenty years ago, we didn’t. Just as computing power has exponentially increased over the last 50 years, doubling every two years or so, the amount of computational data has been doubling at a similar rate. Ninety percent of all the data in human history was created in the last two years. And the advent of “big data” brings with it such scary and Orwellian doings as Facebook conducting mood experiments on its users.

OkCupid founder Christian Rudder jumped to Facebook’s defense on Monday, talking about how the online dating service had conducted similar experiments on its millions of users, including lying to them about how well-matched they were with potential dates. (People weren’t quite as outraged as they were with Facebook, possibly because, in the words of Gawker’s Jay Hathaway, “Online dating already feels like consenting to participate in a social experiment.”)

Originally Published on Slate

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