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.”

Read the full article

Via The Atlantic

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

Big Data Peeps At Your Medical Records to Find Drug Problems

Big Data Peeps At Your Medical Records to Find Drug Problems

No one likes it when a new drug in people's medicine cabinets turns out to have problems — just remember the Vioxx debacle a decade ago, when the painkiller was removed from the market over concerns that it increased the risk of heart attack and stroke.

To do a better job of spotting unforeseen risks and side effects, the Food and Drug Administration is trying something new — and there's a decent chance that it involves your medical records.

Via NPR Health News

Link to full article

Will Video Kill the Classroom Star? The Threat and Opportunity of MOOCs for Full-time MBA Programs

New research by Christian Terwiesch, Andrew M. Heller Professor and Co-director of the Mack Institute, and Karl Ulrich, CIBC Endowed Professor and Vice Dean of Innovation at the Wharton School, examines the emergence of the Massively Open Online Course (MOOC) and its impact on business schools. 

Prior to the 20th century, entertainment was predominantly delivered via live performances. The advent of motion pictures fundamentally altered the entertainment industry: Why go and see a local clown in the town square if you can watch one of the best in the world on the big screen? With the advent of online instructional technology, will classroom instruction undergo a similar transformation?

Link to the full interview

Originally published on Wharton.upenn.edu 

Tweet Your Way to Better Health

Twitter and other social media should be better utilized to convey public health messages, especially to young adults, according to a new analysis by researchers at UC San Francisco.

The analysis focused on public conversations on the social media site Twitter around one health issue: indoor tanning beds, which are associated with an increased risk of skin cancer. The researchers assessed the frequency of Twitter mentions related to indoor tanning and tanning health risks during a two week period in 2013. During that timeframe, more than 154,000 tweets (English language) mentioned indoor tanning – amounting to 7.7 tweets per minute. But fewer than 10 percent mentioned any of the health risks, such as skin cancer, that have been linked to indoor tanning.

That offers a potentially valuable forum for conveying important health information directly to the people who might benefit the most from it, but the authors said further research is needed to explore whether that would be effective.  

via UCSF.

Link to original article here.

Facebook Study Sparks Soul-Searching and Ethical Questions

A Facebook study on users' emotions sparked soul-searching among researchers and calls for better ethical guidelines in the online world.

"I do think this whole incident will cause a lot of rethinking" about the relationship between business and academic researchers, said Susan T. Fiske, the study's editor and a professor of psychology and public affairs at Princeton University.

Researchers from Facebook and Cornell University manipulated the news feed of nearly 700,000 Facebook users for a week in 2012 to gauge whether emotions spread on social media.

They found that users who saw more positive posts tended to write more positive posts themselves, and vice versa. The study was published in the Proceedings of the National Academy of Sciences earlier in June, but sparked outrage after a blog post Friday said the study used Facebook users as "lab rats." 

[...]

Jonathan Moreno, a professor of medical ethics and health policy at University of Pennsylvania, also criticized the study. "You are sending people whose emotional state you don't know anything about communications that they might find disturbing," Dr. Moreno said. "That might or might not be something a research ethics board would worry about." 

via The Wall Street Journal

Link to full article here.

Power to the Health Data Geeks

A computer programmer and a kid in a Batman suit walk into a pancake house ... It sounds like a joke, but it really happened, and now the programmer — Dave Vockell — has a new product to bring to market. It's an app to help seniors talk to their doctors about medical care.
Venture capitalists are pouring more money than ever into digital health startups — more than $2 billion so far this year alone, according to the venture capital firm Rock Health. These investors are betting that entrepreneurs can help doctors, hospitals and insurers become leaner — which the Affordable Care Act strongly encourages.

Link to full article here.

Via NPR Shots

The shifting model in clinical diagnostics: how next-generation sequencing and families are altering the way rare diseases are discovered, studied, and treated

We are the fathers of two patients with a newly diagnosed syndrome that is highlighted in the study by Enns et al.1 Our children are two among a handful of others in the world with this disease caused by mutations in the NGLY1 gene. It is the first recognized disorder of deglycosylation. We fully antici- pate that NGLY1 will generate many interesting studies for years to come, but promoting NGLY1 is not our aim here. Instead, we would like to provide you with our perspective on a shift that is occurring in clinical diagnostics. Families of children with serious genetic diseases often enter a diagnostic odyssey, moving from gene to gene in the hope of finding an explanation for the condition. Two new developments in genetics promise to dramatically shorten the time to reach a successful diagnosis: next-generation sequencing (NGS) and family engagement through social media. The very speed with which Need et al.2 and Enns et al. were published suggests a new model for clinicians and researchers. In this model, families, patients, and scientists work jointly to find new patients, confirm or refute hypotheses, exchange clinical information, enhance collaboration methods, and support research toward understanding and treatment.

Link to the full article

Article originally published in Nature

"Privacy is Bad for Your Health" Lecture

Leslie Saxon wants companies to have our medical data and explained why at Wired Health. Saxon is the chief of cardiovascular medicine at the Keck School, USC. She is also the executive director of the Center for Body Computing (CBC) and in the years leading up to 2006 -- four spent in college and then 20+ as a practicing physician -- Saxon had interacted with over 37,000 patients. In 2006, she made the switch to digital health tracking, taking data wirelessly from patients' pacemakers and other devices. In the eight years since then, Saxon has seen 308,000 digital patient interactions. A ten-fold increase in patient turnover might seem a lot, but its nothing compared to the plans she wants to see in digital health's future. WIRED Health is a one-day summit designed to introduce, explain and predict the coming trends facing the medical and personal healthcare industries. This ambitious inaugural event was held on Tuesday April 29, at the new home of the Royal College of General Practitioners, 30 Euston Square, London.

Link to video of full lecture at Wired Health

This text was orignally posted on Wired UK

Straight talk with...Jamie Heywood

Last month, Genentech launched an unusual five-year research pact. The San Francisco subsidiary of the drug giant Roche partnered with Cambridge, Massachusetts–based PatientsLikeMe to mine the online patient network's database of real-world experiences. In exchange for an undisclosed fee, Genentech now has access to nearly all of the information collected by PatientsLikeMe, which currently includes more than 250,000 members with 2,000 different conditions. The hope is that studying the network will help Genentech learn how to stratify patient populations more precisely and measure drug effectiveness better, among other things.

At the helm of PatientsLikeMe is Jamie Heywood, a mechanical engineer by training who devised the idea for the platform ten years ago when he noticed some striking similarities between the information asked of online dating websites and clinical trial portals. With his brother Benjamin and friend Jeff Cole, Heywood founded PatientsLikeMe later that same year. Nicholette Zeliadt spoke to Heywood about where the crowdsourcing site stands a decade on from its inception and what this new partnership with Genentech will mean for open-participation research.

Link to the full article

Originally published in Nature Medicine

Digital Drug Safety Surveillance: Monitoring Pharmaceutical Products in Twitter

Background: Traditional adverse event (AE) reporting systems have been slow in adapting to online AE reporting from patients, relying instead on gatekeepers, such as clinicians and drug safety groups, to verify each potential event. In the meantime, increasing numbers of patients have turned to social media to share their experiences with drugs, medical devices, and vaccines.

Objective: The aim of the study was to evaluate the level of concordance between Twitter posts mentioning AE-like reactions and spontaneous reports received by a regulatory agency.

Methods: We collected public English-language Twitter posts mentioning 23 medical products from 1 November 2012 through 31 May 2013. Data were filtered using a semi-automated process to identify posts with resemblance to AEs (Proto-AEs). A dictionary was developed to translate Internet vernacular to a standardized regulatory ontology for analysis (MedDRA®). Aggregated frequency of identified product-event pairs was then compared with data from the public FDA Adverse Event Reporting System (FAERS) by System Organ Class (SOC).

Link to full text.

This study was published in Drug Safety.

Tweets about hospital quality: a mixed methods study

Background: Twitter is increasingly being used by patients to comment on their experience of healthcare. This may provide information for understanding the quality of healthcare providers and improving services.

Objective: To examine whether tweets sent to hospitals in the English National Health Service contain information about quality of care. To compare sentiment on Twitter about hospitals with established survey measures of patient experience and standardised mortality rates.

Design: A mixed methods study including a quantitative analysis of all 198 499 tweets sent to English hospitals over a year and a qualitative directed content analysis of 1000 random tweets. Twitter sentiment and conventional quality metrics were compared using Spearman's rank correlation coefficient.

Link to full study

This study was published in BMJ Quality and Safety

The Parable of Google Flu: Traps in Big Data Analysis

In February 2013, Google Flu Trends (GFT) made headlines but not for a reason that Google executives or the creators of the flu tracking system would have hoped. Nature reported that GFT was predicting more than double the proportion of doctor visits for influenza-like illness (ILI) than the Centers for Disease Control and Prevention (CDC), which bases its estimates on surveillance reports from laboratories across the United States (1, 2). This happened despite the fact that GFT was built to predict CDC reports. Given that GFT is often held up as an exemplary use of big data (3, 4), what lessons can we draw from this error?

Link to full article

Article published by Science Magazine. Link to pdf of article provided by authors on the Complexity and Social Networks Blog of the Institute for Quantitative Social Science and the Program on Networked Governance, Harvard University

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.

Link to full article

Article originally published on The Journal of Medical Internet Research

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.

Link to full paper

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].

Link to full paper

Originally published in the Journal of Medical Internet Research

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.

Link to full paper

Originally Published in The Journal of Medical Internet Research 

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.

Link to the full article 

Article originally published in Nature Medicine.