How Can Research Keep Up With eHealth? Ten Strategies for Increasing the Timeliness and Usefulness of eHealth Research

Background: eHealth interventions appear and change so quickly that they challenge the way we conduct research. By the time a randomized trial of a new intervention is published, technological improvements and clinical discoveries may make the intervention dated and unappealing. This and the spate of health-related apps and websites may lead consumers, patients, and caregivers to use interventions that lack evidence of efficacy.

Objective: This paper aims to offer strategies for increasing the speed and usefulness of eHealth research.

Methods: The paper describes two types of strategies based on the authors’ own research and the research literature: those that improve the efficiency of eHealth research, and those that improve its quality.

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Article originally published on The Journal of Medical Internet Research

Therapists' apps aim to help with mental health issues

Games like Flappy Bird and Candy Crush have helped many of us de-stress during long waits at the doctor's office and crowded Metro rides. But what if an app could actually help with mental health?

Researchers from Hunter College and the City University of New York say they've developed an app that can reduce anxiety.

In the game, called PersonalZen, players encounter two animated characters in a field of grass. One of them looks calm and friendly, while the other looks angry. Soothing music plays in the background. When one creature burrows into the grass, players must follow the rustling leaves and trace its path.

It's not quite as exciting Flappy Bird, but the researchers found that it helped anxious people. We tried it out, and found that focusing on keeping track of those sprites was more challenging than we initially expected.

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Article originally posted by NPR.

In Search of a Few Good Apps

mHealth apps are mobile device applications intended to improve health outcomes, deliver health care services, or enable health research.1 The number of apps has increased substantially, and more than 40 000 health, fitness, and medical apps currently are available on the market.2 Because apps can be used to inexpensively promote wellness and manage chronic diseases, their appeal has increased with health reform and the increasing focus on value. The bewildering diversity of apps available has made it difficult for clinicians and the public to discern which apps are the safest or most effective.

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Article originally posted on JAMA

Hear Your Unborn Baby's Heartbeat? There's an App for That

Bellabeat, the company behind the iPhone-enabled fetal heart-rate monitor, updated its iOS app on Thursday.

The latest version includes a new feature to help expectant mothers track changes in their mental health, in addition to the tools for keeping tabs on their own physical health and their baby's development. 

Bellabeat's Connected System allows pregnant women to listen to their children's heartbeats through a device that connects to a smartphone with an audio cable. It uses sound waves to find the baby's heartbeat while the accompanying Bellabeat app records the audio.

The app tracks heartbeats per minute and gives users tools to track other important stats, like the number of times a baby kicks or how its weight changes over time.

Link to the full article: http://mashable.com/2014/03/20/bellabeat-mood-tracking/

Article originally posted on Mashable.

Crowdsourcing medical decisions: Ethicists worry Josh Hardy case may set bad precedent

Just hours after social-media supporters of a dying 7-year-old boy pressured a reluctant biotech company into giving him an experimental medication, the backlash began. Is “it rite to save 1 child an[d] not the rest?” wondered one commenter on a news forum. “It’s really not fair to the thousands of others that were turned down just because they didn’t make a big public outcry,” said another.

The Herald-Sun newspaper in Durham, N.C., where the company that makes the drug is based, said it was glad for the boy’s sake that he was able to get the medicine. “But the process leaves us pained,” the editorial board wrote. “This is no way to make health-care decisions.”

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Article originally published by The Washington Post

The Next Big Health App Needs to Do More Than Just Track Our Numbers

Think about your heartbeat for a minute. In fact, hold your breath right now while you do. You should be able to feel it as it changes speed. Maybe you know your resting heart rate, or your maximum heart rate, but do you know how much it varies, or at what rate? Heart rate variability measures the amount of time between beats, and how much that changes. That’s actually the more meaningful number than your pulse. It’s something a good heart rate monitor will use to tell you how hard you should workout on a given day. That is, it takes information and makes it actionable, delivering meaning, rather than just a number. Too often, we track the beats per minute, when it’s the time between those beats that really matters.

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Originally published in Wired

Mental Health Agencies Use Social Media to Help Youth

Three Thunder Bay mental health agencies have launched a new program to help youth express themselves and find support. St. Joseph's Care Group, the Children's Centre and Thunder Bay Counselling Centre are turning to social media in an effort to reach out to young people. The agencies have launched the #sharehowUfeel campaign, through which teens can express themselves on Facebook, Twitter and Instagram.

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Originally published at CBC.ca

Half of Americans Believe in Medical Conspiracy Theories

Misinformation about health remains widespread and popular.

Half of Americans subscribe to medical conspiracy theories, with more than one-third of people thinking that the Food and Drug Administration is deliberately keeping natural cures for cancer off the market because of pressure from drug companies, a survey finds.

Twenty percent of people said that cellphones cause cancer — and that large corporations are keeping health officials from doing anything about it. And another 20 percent think doctors and the government want to vaccinate children despite knowing that vaccines cause autism.

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Originally posted in NPR.

One-Hit Wonders

For more than a year now, tens of millions of Americans have found time each day to devote themselves to an essential task: swiping at their phones and tablets to arrange colorful candy icons in rows. They are playing Candy Crush Saga, a wildly addictive mobile game that has been downloaded more than half a billion times. You can play the game for free, but enough people have been willing to pay for extra lives and various performance-boosting tools to make it staggeringly profitable. Last year, Candy Crush’s maker, an Irish company called King Digital Entertainment, had almost two billion dollars in sales, five hundred and sixty-seven million dollars of which was pure profit. Last month, King filed for an initial public offering, which is expected to value the company at five billion dollars.

 The I.P.O. is no surprise, given King’s domination of the booming mobile-game business, but it’s likely to end badly, because King is part of a venerable tradition: the one-hit wonder. Like Coleco, with Cabbage Patch Kids, or Ty, Inc., with Beanie Babies, King’s business is dependent on its one star product; although the company has more than a hundred titles, almost eighty per cent of its revenue comes from Candy Crush. King has done a great job of making money from the game, and of keeping it fresh, but Candy Crush is still a fad, and, like all fads, it will fade. Indeed, as King’s filing makes clear, the number of people who pay for the game has already begun to taper off, as have sales and profits.

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This article was originally posted in The New Yorker. 

Crowdsourcing Clinical Trial Protocols

The design of a clinical trial protocol typically has input from a small research team—rarely more than 10 reviewers and usually far fewer.

And the number of patients who review a protocol in detail and offer input is typically… zero.

Now, though, a different kind of clinical trial is about to begin enrolling patients, a trial that used crowdsourcing to develop the protocol. The trial will evaluate the use of metformin in men with rising prostate-specific antigen after localized treatment for prostate cancer.

Faster trial development and increased patient accrual are among the goals.

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This article was originally published in Oncology Times. 

Seeking and Sharing Health Information Online: Comparing Search Engines and Social Media

Search engines and social media are two of the most commonly used online services; in this paper, we examine how users appropriate these platforms for online health activities via both large-scale log analysis and a survey of 210 people. While users often turn to search engines to learn about serious or highly stigmatic conditions, a surprising amount of sensitive health information is also sought and shared via social media, in our case the public social plat-form Twitter. We contrast what health content people seek via search engines vs. share on social media, as well as why they choose a particular platform for online health activities. We reflect on the implications of our results for designing search engines, social media, and social search tools that better support people’s health information seeking and sharing needs.

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Study originally published by Microsoft Research

Considerations for Conducting Web-Based Survey Research With People Living With Human Immunodeficiency Virus Using a Community-Based Participatory Approach

Web or Internet-based surveys are increasingly popular in health survey research, enabling researchers to obtain a large amount of information in a cost-effective manner [1,2]. Strengths include the ability for individuals to anonymously complete a questionnaire on their own time at their own pace [3,4]. Nevertheless, Web-based surveys are complex to design and administer for a variety of reasons, including issues surrounding informed consent, risk, anonymity, data storage and security, and sampling [1,5,6]. Response rates with Web-based surveys may be lower compared with paper-based questionnaires further highlighting the importance of carefully considering survey design in relation to the target population [7]. Methodological considerations of Web-based survey research have been considered in other chronic illness populations such as cancer [8], cardiovascular disease [9], Parkinson’s disease [10], and diabetes [11]. Issues conducting Web-based surveys have also been described with men who have sex with men [12,13], and in the context of human immunodeficiency virus (HIV) testing and prevention [14-16]. However, the strengths and challenges of Web-based surveys directly related to people living with HIV are unclear [17].

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Originally published in the Journal of Medical Internet Research

Three Ideas Wearable Designers Should Steal From This Smart Medical Device

Designers often talk about doing good, but Artefact actually backs it up.

In between crafting elegant set top boxes and mobile UIs, the Seattle studio dedicates time to healthcare concepts that could literally save lives. The latest is Dialog, a wearable platform designed specifically for treating epilepsy.

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Article originally published on Wired

Promoting Health With Enticing Photos of Fruits and Vegetables

The company, owned by Campbell’s, wants to generate more clicks highlighting the plight of those unpopular beets and other less trendy but nutritious fruits and vegetables. It has devised an algorithm to track hashtags on Twitter and elsewhere on the Internet and other mentions of 24 keywords for different vegetables, fruits and all those fatty, sugary favorites. Then, using alluring photographs, humor and music, the website lets visitors click on the Pomegranate Piñata, the Pizzabot or the Guac-a-Mole to get a sense of the numbers behind the item’s popularity on the web in real time. Visitors can play a musical Carrot Keyboard or follow the Burger Snake. The goal, say Bolthouse executives, is to remind consumers that a fresh strawberry is just as beautiful as those found in a dessert like a tart — and healthier.

“Somehow, industry has used marketing to an incredibly powerful effect to glamorize and normalize the daily consumption of unhealthy foods and drinks,” said Nancy F. Huehnergarth, president of Nancy F. Huehnergarth Consulting, a food policy consulting firm. “Well, why not use some of the same techniques to try to level the playing field?”

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Article originally published in The New York Times.

Use of a Web 2.0 Portal to Improve Education and Communication in Young Patients With Families: Randomized Controlled Trial

Diabetes requires extensive self-care and comprehensive knowledge. The management of the disease, including insulin injections and self-control of blood glucose, affects everyday life, thus coping skills are essential. Health-related quality of life (HRQOL) may be influenced, particularly diabetes-related influence on HRQOL [1-3]. The association between good metabolic control and risk reduction for late complications is known [4-6] but despite modern treatment, only one third of the patients reach treatment target [7,8]. Efforts to increase patients’ and parents’ knowledge are needed to empower them in their self-care [9].

Thus patient education is central to diabetes self-management [10]. Studies in adult type 1 diabetes populations have indicated that structured patient training and education as part of intensive treatment reduces HbA1c with no increase in severe hypoglycemia, or even with persistent reduction of severe hypoglycemia [11-14]. Although such findings are consistent with modern clinical practice and experience [15], evidence repeatedly has been found insufficient to recommend adaptation of any particular educational method or program for type 1 diabetes [16,17]. There are several approaches, but there is no single one that emerges as clearly dominant.

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Originally Published in The Journal of Medical Internet Research 

Tech That Helps Me With Healthy Living

Living a healthy and active life takes a lot of extra work as a parent. But with the help of an arsenal of gadgets and apps I’ve found it’s possible to gain an advantage in this daily battle. I am a parent of three girls all under the age of six which means my attention is split between a barrage of demands. It’s hard to be a good parent, involved father, and physical fitness book-keeper at the same time. These specific tasks are not mutually exclusive but I figured that there were tools to make the overall process more efficient.

My goal was to find a way to track what went into my body and track the calories I was able to burn off throughout the day. The experiment that I was going to run was to test the popular hypothesis that the best way to influence dietary change is to be aware of what you’re eating and in what quantities. So I needed to find a way to easily track my intake and the second half of the plan was to monitor my activity. So I did what any other person would do in my situation. I took the advice of fitness celebrities and random people on the internet.

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Article originally published on Wired

The Monitored Man

For years, health advocates have been telling us to move more. But just how much more?

A multitude of activity tracking devices now promise to answer that question. Generally, these digital monitors, which can be worn around the wrist, on collars and belts, even as jewelry, record how and how much you move throughout the day. Some aim to do a great deal more. Makers of the devices have begun intensive campaigns aimed at convincing the large population of “worried well” consumers to get wired and start recording their every move.

How well do these work?

Link to the full article  

Article originally published in The New York Times

Engage with research participants about social media

A growing number of participants in clinical trials are sharing information about their health online. It's time that the drug development community starts to examine how this social media use might compromise the integrity of research studies and how it might also offer new opportunities.

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Article originally published in Nature Medicine.

Social Media Users Willing To Share Health Data Despite Concerns About Privacy

...Freeman-Daily's response to sharing medical information online reflects the attitude many people with rare and complex diseases seem to have according to the findings of a recent report by the Institute of Medicine.

The report, titled "Social Networking Sites and the Continuously Learning Health System: A Survey," is the discussion of two online surveys -- one conducted by a research arm of the Consumer Reports National Testing and Research Center and the other by PatientsLikeMe, a for-profit social networking site that shares data, offers peer support and facilitates transparent research.

It found that 94% of social media users with medical conditions said they would be willing to share data about their health to help doctors improve care. The same percentage -- 94% -- said they would do so to help other patients like them.

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Article originally published on ihealthbeat.org

Jawbone launches UP Coffee app to help users correlate sleep with caffeine

Jawbone, maker of the Jawbone UP activity tracker, launched an app today with a different take on sleep tracking. The app, UP Coffee, helps users regulate their caffeine intake and understand how caffeine affects their sleep. While the app is open for anyone to download, not just owners of a Jawbone UP wristband, if the user owns the UP or UP24, he or she can also sync UP Coffee with that device.

UP Coffee provides users with more information about how their caffeine intake affects sleep, the more they log in the app. After three days, the app will compare the user to other coffee drinkers and after one week, the app will provide the user with his or her “caffeine persona”. After 10 days, the app can give the user more actionable information, such as how much sleep the user will lose on average for every 100mg of caffeine he or she ingests.

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Article originally published on on mobihealthnews.com

Could Behavioral Medicine Lead the Web Data Revolution?

Digital footprints left on search engines, social media, and social networking sites can be aggregated and analyzed as health proxies, yielding anonymous and instantaneous insights. At present, nearly all the existing work has focused on acute diseases. This means the value added from web surveillance is reduced because the effectiveness of even high-profile systems such as Google Flu Trends are inferior to already strong traditional surveillance. Conversely, the future of web surveillance is promising in an area where traditional surveillance is largely incomplete: behavioral medicine, a multidisciplinary field incorporating medicine, social science, and public health and focusing on health behaviors and mental health.

Link to the full article.

Article originally published on JAMA. 

Watch out Barbie: Average body Lammily doll is coming

An artist has raised enough crowd-sourced funds to design a doll with normal body proportions in response to Barbie's unrealistic body.

 In less than a day, Nickolay Lamm of Pittsburgh has exceeded his $95,000 goal to produce a first run of the Lammily doll.

Link to the full article.

Article originally published on USA Today

Twitter Can Detect HIV Outbreaks in Real-Time, Study Says

A team of UCLA researchers found that Twitter and other real-time social media can be used to track HIV outbreaks and drug behavior, potentially helping detection and prevention efforts.

The team's study, published in the journal Preventive Medicine and conducted through the Center for Digital Behavior at UCLA, suggests a link between geographic outbreaks in the U.S. and tweets with phrases that indicate drug-related and sexually risky behavior.

Read the full article.

Full article originally posted on Mashable.com.