New paper by Cass Sunstein: “A statement or action can be said to be manipulative if it does not sufficiently engage or appeal to people’s capacity for reflective and deliberative choice. One problem with manipulation, thus understood, is that it fails to respect people’s autonomy and is an affront to their dignity. Another problem is that if they are products of manipulation, people’s choices might fail to promote their own welfare, and might instead promote the welfare of the manipulator. To that extent, the central objection to manipulation is rooted in a version of Mill’s Harm Principle: People know what is in their best interests and should have a (manipulation-free) opportunity to make that decision. On welfarist grounds, the norm against manipulation can be seen as a kind of heuristic, one that generally works well, but that can also lead to serious errors, at least when the manipulator is both informed and genuinely interested in the welfare of the chooser.
For the legal system, a pervasive puzzle is why manipulation is rarely policed. The simplest answer is that manipulation has so many shades, and in a social order that values free markets and is committed to freedom of expression, it is exceptionally difficult to regulate manipulation as such. But as the manipulator’s motives become more self-interested or venal, and as efforts to bypass people’s deliberative capacities becomes more successful, the ethical objections to manipulation become very forceful, and the argument for a legal response is fortified. The analysis of manipulation bears on emerging first amendment issues raised by compelled speech, especially in the context of graphic health warnings. Importantly, it can also help orient the regulation of financial products, where manipulation of consumer choices is an evident but rarely explicit concern….(More)”.
Medical Wikis Dedicated to Clinical Practice: A Systematic Review
New paper by Alexandre Brulet et al: “Wikis may give clinician communities the opportunity to build knowledge relevant to their practice. The only previous study reviewing a set of health-related wikis, without specification of purpose or audience, globally showed a poor reliability…. Our aim was to review medical wiki websites dedicated to clinical practices…..Among 25 wikis included, 11 aimed at building an encyclopedia, five a textbook, three lessons, two oncology protocols, one a single article, and three at reporting clinical cases. Sixteen wikis were specialized with specific themes or disciplines. Fifteen wikis were using MediaWiki software as-is, three were hosted by online wiki farms, and seven were purpose-built. Except for one MediaWiki-based site, only purpose-built platforms managed detailed user disclosures. ….The 25 medical wikis we studied present various limitations in their format, management, and collaborative features. Professional medical wikis may be improved by using clinical cases, developing more detailed transparency and editorial policies, and involving postgraduate and continuing medical education learners….(More)”
Text service to save young lives in East Africa
Springwise: “In the developing world, the most effective healthcare solutions are often the most simple. A few years ago we featured FrontlineSMS:Medic, a service allowing medical workers in poor rural villages to communicate patient information with hospitals using free, two-way texts. Now, a Kenyan service called Totohealth is also aiming to use SMS as a lifesaving tool.
Totohealth is a social enterprise, directed at new parents and expecting mothers, that is aiming to use SMS messaging to greatly reduce the child and mother mortality rate, and minimise developmental defects in infants. The company works with hospitals and maternity centres to give vital information to patients, twice a week. These personalised texts are designed to dispel myths, offer advice and ensure that appointments and vaccinations are met. The texts can be translated into a variety of languages. The messages and their replies are then kept in a patient database which the health service can use.
The service is free for users, and is funded by the small fees paid by hospitals and NGOs to get their messages out. Pilots began last year in Nairobi and since then Totohealth has worked with over 6,000 mothers and fathers across nine hospitals, sending more than 133,000 texts in the process. Executive Director Felix Kimaru plans to expand to those areas of Kenya with the highest rate of mortality in children under five, before growing into Somalia and elsewhere in East Africa.
According to Kimaru, “preventive health in 3rd world countries is still far from being realized”, with many people believing that the health of citizens is in the hands of government and NGOs. Along with a swathe of other ‘mHealth’ platforms, Kimaru is aiming to change that, by empowering new parents with the information needed to take their own health in their hands….”
Can Selfies Save Nutrition Science?
Trevor Butterworth at Stats.org: “You may have never heard of the Energy Balance Working Group, but this collection of 45 experts on nutrition, exercise, biochemistry, and other related disciplines have collectively thrown a “House-like” wrench into the research literature on everything from obesity to cancer and heart disease. Gregory House, the fictional and fantastically brilliant physician played by Hugh Laurie in the eponymous TV show frequently found his patients wanting in the court of self-reported truth: “I’ve found that when you want to know the truth about someone that someone is probably the last person you should ask.”
This is more or less what the Energy Balance Working Group have concluded in an “expert report” recently published in the International Journal of Obesity. If you want to know the truth about how much someone eats and exercises that someone is probably the last person you should ask….The problem is that self-reporting is a cheap and convenient source of data for research, while more accurate alternatives are either expensive and challenging or, as yet, more promise than reality (see sidebar)….
“There are at least two categories of solutions on the horizon. In one category, there are wearable monitoring devices that can collect objective, real-time data. Examples in the works or in use include photographic food diaries, records of chewing and swallowing behavior, and evaluating the time and intensity of movement using accelerometers and GPS, among others. It is important to note that there are still challenges converting these measurements into reliable estimates of energy intake and expenditure, but work is ongoing… David Allison, Distinguished Professor, Quetelet Endowed Professor of Public Health, University of Alabam”…(More)“
Ebola: Call for more sharing of scientific data
at the BBC: “The devastation left by the Ebola virus in west Africa raises many questions for science, policy and international development. One issue that has yet to receive widespread media attention is the handling of genetic data on the virus. By studying its code, scientists can trace how Ebola leapt across borders, and how, like all viruses, it is constantly evolving and changing.
Yet, researchers have been privately complaining for months about the scarcity of genetic information about the virus that is entering the public domain….
At the heart of the issue is the scientific process. The main way scientists are rewarded for their work is through the quality and number of research papers they publish.
Data is only revealed for scrutiny by the wider scientific community when the research is published, which can be a lengthy process….
Dr Emma Thomson of the MRC-University of Glasgow centre for virus research says all journals publishing papers on Ebola must insist all data is released, as a collaborative approach could save lives.
“At the time of publication is really important – these days most people do it but not always and journals often insist (but not always),” she told me.
“A lot of Ebola sequencing has happened but the data hasn’t always been uploaded.
“It’s an international emergency so people need to get the data out there to allow it to be analysed in different ways by different labs.”
In the old days of the public private race to decode the first human genome, the mood was one of making data accessible to all for the good of science and society.
Genetic science and public attitudes have moved on, but in the case of Ebola, some are saying it may be time for a re think.
As Prof Paul Hunter, Professor of health protection at the University of East Anglia, put it: “It would be tragic if, during a crisis like this, data was not being adequately shared with the public health community.
“The rapid sharing of data could help enable more rapid control of the outbreak.”…(More)”
The Precision Medicine Initiative: Data-Driven Treatments as Unique as Your Own Body
White House Press Release: “…the Precision Medicine Initiative will pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.
Most medical treatments have been designed for the “average patient.” As a result of this “one-size-fits-all-approach,” treatments can be very successful for some patients but not for others. This is changing with the emergence of precision medicine, an innovative approach to disease prevention and treatment that takes into account individual differences in people’s genes, environments, and lifestyles. Precision medicine gives clinicians tools to better understand the complex mechanisms underlying a patient’s health, disease, or condition, and to better predict which treatments will be most effective….
Objectives of the Precision Medicine Initiative:
- More and better treatments for cancer: NCI will accelerate the design and testing of effective, tailored treatments for cancer by expanding genetically based clinical cancer trials, exploring fundamental aspects of cancer biology, and establishing a national “cancer knowledge network” that will generate and share new knowledge to fuel scientific discovery and guide treatment decisions.
- Creation of a voluntary national research cohort: NIH, in collaboration with other agencies and stakeholders, will launch a national, patient-powered research cohort of one million or more Americans who volunteer to participate in research. Participants will be involved in the design of the Initiative and will have the opportunity to contribute diverse sources of data—including medical records; profiles of the patient’s genes, metabolites (chemical makeup), and microorganisms in and on the body; environmental and lifestyle data; patient-generated information; and personal device and sensor data. Privacy will be rigorously protected. This ambitious project will leverage existing research and clinical networks and build on innovative research models that enable patients to be active participants and partners. The cohort will be broadly accessible to qualified researchers and will have the potential to inspire scientists from multiple disciplines to join the effort and apply their creative thinking to generate new insights. The ONC will develop interoperability standards and requirements to ensure secure data exchange with patients’ consent, to empower patients and clinicians and advance individual, community, and population health.
- Commitment to protecting privacy: To ensure from the start that this Initiative adheres to rigorous privacy protections, the White House will launch a multi-stakeholder process with HHS and other Federal agencies to solicit input from patient groups, bioethicists, privacy, and civil liberties advocates, technologists, and other experts in order to identify and address any legal and technical issues related to the privacy and security of data in the context of precision medicine.
- Regulatory modernization: The Initiative will include reviewing the current regulatory landscape to determine whether changes are needed to support the development of this new research and care model, including its critical privacy and participant protection framework. As part of this effort, the FDA will develop a new approach for evaluating Next Generation Sequencing technologies — tests that rapidly sequence large segments of a person’s DNA, or even their entire genome. The new approach will facilitate the generation of knowledge about which genetic changes are important to patient care and foster innovation in genetic sequencing technology, while ensuring that the tests are accurate and reliable.
- Public-private partnerships: The Obama Administration will forge strong partnerships with existing research cohorts, patient groups, and the private sector to develop the infrastructure that will be needed to expand cancer genomics, and to launch a voluntary million-person cohort. The Administration will call on academic medical centers, researchers, foundations, privacy experts, medical ethicists, and medical product innovators to lay the foundation for this effort, including developing new approaches to patient participation and empowerment. The Administration will carefully consider and develop an approach to precision medicine, including appropriate regulatory frameworks, that ensures consumers have access to their own health data – and to the applications and services that can safely and accurately analyze it – so that in addition to treating disease, we can empower individuals and families to invest in and manage their health.”
(More).
With a Few Bits of Data, Researchers Identify ‘Anonymous’ People
Natasha Singer in the New York Times: “Even when real names and other personal information are stripped from big data sets, it is often possible to use just a few pieces of the information to identify a specific person, according to a study to be published Friday in the journal Science.
In the study, titled “Unique in the Shopping Mall: On the Reidentifiability of Credit Card Metadata,” a group of data scientists analyzed credit card transactions made by 1.1 million people in 10,000 stores over a three-month period. The data set contained details including the date of each transaction, amount charged and name of the store.
Although the information had been “anonymized” by removing personal details like names and account numbers, the uniqueness of people’s behavior made it easy to single them out.
In fact, knowing just four random pieces of information was enough to reidentify 90 percent of the shoppers as unique individuals and to uncover their records, researchers calculated. And that uniqueness of behavior — or “unicity,” as the researchers termed it — combined with publicly available information, like Instagram or Twitter posts, could make it possible to reidentify people’s records by name.
“The message is that we ought to rethink and reformulate the way we think about data protection,” said Yves-Alexandre de Montjoye, a graduate student in computational privacy at the M.I.T. Media Lab who was the lead author of the study. “The old model of anonymity doesn’t seem to be the right model when we are talking about large-scale metadata.”
The analysis of large data sets containing details on people’s behavior holds great potential to improve public health, city planning and education.
But the study calls into question the standard methods many companies, hospitals and government agencies currently use to anonymize their records. It may also give ammunition to some technologists and privacy advocates who have challenged the consumer-tracking processes used by advertising software and analytics companies to tailor ads to so-called anonymous users online….(More).”
The new scientific revolution: Reproducibility at last
in the Washington Post:”…Reproducibility is a core scientific principle. A result that can’t be reproduced is not necessarily erroneous: Perhaps there were simply variables in the experiment that no one detected or accounted for. Still, science sets high standards for itself, and if experimental results can’t be reproduced, it’s hard to know what to make of them.
“The whole point of science, the way we know something, is not that I trust Isaac Newton because I think he was a great guy. The whole point is that I can do it myself,” said Brian Nosek, the founder of a start-up in Charlottesville, Va., called the Center for Open Science. “Show me the data, show me the process, show me the method, and then if I want to, I can reproduce it.”
The reproducibility issue is closely associated with a Greek researcher, John Ioannidis, who published a paper in 2005 with the startling title “Why Most Published Research Findings Are False.”
Ioannidis, now at Stanford, has started a program to help researchers improve the reliability of their experiments. He said the surge of interest in reproducibility was in part a reflection of the explosive growth of science around the world. The Internet is a factor, too: It’s easier for researchers to see what everyone else is doing….
Errors can potentially emerge from a practice called “data dredging”: When an initial hypothesis doesn’t pan out, the researcher will scan the data for something that looks like a story. The researcher will see a bump in the data and think it’s significant, but the next researcher to come along won’t see it — because the bump was a statistical fluke….
So far about 7,000 people are using that service, and the center has received commitments for $14 million in grants, with partners that include the National Science Foundation and the National Institutes of Health, Nosek said.
Another COS initiative will help researchers register their experiments in advance, telling the world exactly what they plan to do, what questions they will ask. This would avoid the data-dredging maneuver in which researchers who are disappointed go on a deep dive for something publishable.
Nosek and other reformers talk about “publication bias.” Positive results get reported, negative results ignored. Someone reading a journal article may never know about all the similar experiments that came to naught….(More).”
Study: Complaining on Twitter correlates with heart disease risks
Sam Machkovech at ArsTechnica: “Tweets prove better regional heart disease predictor than many classic factors. This week, a study was released by researchers at the University of Pennsylvania that found a surprising correlation when studying two kinds of maps: those that mapped the county-level frequency of cardiac disease, and those that mapped the emotional state of an area’s Twitter posts.
In all, researchers sifted through over 826 million tweets, made available by Twitter’s research-friendly “garden hose” server access, then narrowed those down to roughly 146 million tweets that had been posted with geolocation data from over 1,300 counties (each county needed to have at least 50,000 tweets to sift through to qualify). The team then measured an individual county’s expected “health” level based on frequency of certain phrases, using dictionaries that had been put through scrutiny over their application to emotional states. Negative statements about health, jobs, and attractiveness—along with a bump in curse words—would put a county in the “risk” camp, while words like “opportunities,” “overcome,” and “weekend” added more points to a county’s “protective” rating.
Not only did this measure correlate strongly with age-adjusted heart disease rate data, it turned out to be a more efficient predictor of higher or lower disease likelihood than “ten classical predictors” combined, including education, obesity, and smoking. Twitter beat that data by a rate of 42 percent to 36 percent….Psychological Science, 2014. DOI: 10.1177/0956797614557867 (About DOIs)….(More)”
Survive and Thrive: How Big Data Is Transforming Health Care
Jackie Roche at Pacific Standard: “When you step on a scale, take your temperature, or check your blood pressure, you’re using data from your body to measure your health. Advances in fitness trackers have made health quantification more accessible to casual users. But for researchers, health care providers, and people with chronic conditions, advances in tracking technology, data analysis, and automation offer significant improvements in medical treatment and quality of life.
This three-part series explores health quantification through the eyes of Rutgers University Ph.D student Maria Qadri, who has both professional and personal experience in the matter. Qadri’s research aims to help people with traumatic brain injury and Parkinson’s Disease better manage their illness, and, as a Type 1 diabetic, glucose monitoring is a major part of her own life. Below, we take a look at how number crunching and personal data factors into Qadri’s research and life….(More).”
