Nudging the dead: How behavioural psychology inspired Nova Scotia’s organ donation scheme

Curated on Posted on by Stefaan Verhulst

Joseph Brean at National Post: “Nova Scotia’s decision to presume people’s consent to donating their organs after death is not just a North American first. It is also the latest example of how deeply behavioural psychology has changed policy debates.

That is a rare achievement for science. Governments used to appeal to people’s sense of reason, religion, civic duty, or fear of consequences. Today, when they want to change how their citizens behave, they use psychological tricks to hack their minds.

Nudge politics, as it came to be known, has been an intellectual hit among wonks and technocrats ever since Daniel Kahneman won the Nobel Prize in 2002 for destroying the belief people make decisions based on good information and reasonable expectations. Not so, he showed. Not even close. Human decision-making is an organic process, all but immune to reason, but strangely susceptible to simple environmental cues, just waiting to be exploited by a clever policymaker….

Organ donation is a natural fit. Nova Scotia’s experiment aims to solve a policy problem by getting people to do what they always tend to do about government requests — nothing.

The cleverness is evident in the N.S. government’s own words, which play on the meaning of “opportunity”: “Every Nova Scotian will have the opportunity to be an organ and tissue donor unless they opt out.” The policy applies to kidneys, pancreas, heart, liver, lungs, small bowel, cornea, sclera, skin, bones, tendons and heart valves.

It is so clever it aims to make progress as people ignore it. The default position is a positive for the policy. It assumes poor pickup. You can opt out of organ donation if you want. Nova Scotia is simply taking the informed gamble that you probably won’t. That is the goal, and it will make for a revealing case study.

Organ donation is an important question, and chronically low donation rates can reasonably be called a crisis. But most people make their personal choice “thoughtlessly,” as Kahneman wrote in the 2011 book Thinking, Fast and Slow.

He referred to European statistics which showed vast differences in organ donation rights between neighbouring and culturally similar countries, such as Sweden and Denmark, or Germany and Austria. The key difference, he noted, was what he called “framing effects,” or how the question was asked….(More)”.

Protection of health-related data: new guidelines

Curated on Posted on by Stefaan Verhulst

Press Release: “The Council of Europe has issued a set of guidelines to its 47 member states urging them to ensure, in law and practice, that the processing of health-related data is done in full respect of human rights, notably the right to privacy and data protection.

With the development of new technological tools in the health sector the volume of health-related data processed has grown exponentially showing the need for guidance for health administrations and professionals.

In a Recommendation, applicable to both the public and private sectors, the Council of Europe´s Committee of Ministers, calls on governments to transmit these guidelines to health-care systems and to actors processing health-related data, in particular health-care professionals and data protection officers.

The recommendation contains a set of principles to protect health-related data incorporating the novelties introduced in the updated Council of Europe data protection convention, known as “Convention 108+”, opened for signature in October 2018.

The Committee of Ministers underlines that health-related data should be protected by appropriate security measures taking into account the latest technological developments, their sensitive nature and the assessment of potential risks. Protection measures should be incorporated by design to any information system which processes health-related data.

The recommendation contains guidance with regard to various issues including the legitimate basis for the data processing of health-care data – notably consent by the data subject -, data concerning unborn children, health-related genetic data, the sharing of health-related data by professionals and the storage of data.

The guidelines list a number of rights of data subjects, crucially the transparency of data processing. They also contain a number of principles that should be respected when data are processed for scientific research, when they are collected by mobile devices or when they are transferred across borders….(More)”.

Play and playfulness for public health and wellbeing

Curated on Posted on by Stefaan Verhulst

Book edited by Alison Tonkin and Julia Whitaker: “The role of play in human and animal development is well established, and its educational and therapeutic value is widely supported in the literature. This innovative book extends the play debate by assembling and examining the many pieces of the play puzzle from the perspective of public health. It tackles the dual aspects of art and science which inform both play theory and public health policy, and advocates for a ‘playful’ pursuit of public health, through the integration of evidence from parallel scientific and creative endeavors.

Drawing on international research evidence, the book addresses some of the major public health concerns of the 21st century – obesity, inactivity, loneliness and mental health – advocating for creative solutions to social disparities in health and wellbeing. From attachment at the start of life to detachment at life’s ending, in the home and in the workplace, and across virtual and physical environments, play is presented as vital to the creation of a new ‘culture of health’.

This book represents a valuable resource for students, academics, practitioners and policy-makers across a range of fields of interest including play, health, the creative arts and digital and environmental design….(More)”.

Beyond opinion classification: Extracting facts, opinions and experiences from health forums

Curated on Posted on by Stefaan Verhulst

Paper by Jorge Carrillo-de-Albornoz et al in PLOS-ONE: “Surveys indicate that patients, particularly those suffering from chronic conditions, strongly benefit from the information found in social networks and online forums. One challenge in accessing online health information is to differentiate between factual and more subjective information. In this work, we evaluate the feasibility of exploiting lexical, syntactic, semantic, network-based and emotional properties of texts to automatically classify patient-generated contents into three types: “experiences”, “facts” and “opinions”, using machine learning algorithms. In this context, our goal is to develop automatic methods that will make online health information more easily accessible and useful for patients, professionals and researchers….

We work with a set of 3000 posts to online health forums in breast cancer, morbus crohn and different allergies. Each sentence in a post is manually labeled as “experience”, “fact” or “opinion”. Using this data, we train a support vector machine algorithm to perform classification. The results are evaluated in a 10-fold cross validation procedure.

Overall, we find that it is possible to predict the type of information contained in a forum post with a very high accuracy (over 80 percent) using simple text representations such as word embeddings and bags of words. We also analyze more complex features such as those based on the network properties, the polarity of words and the verbal tense of the sentences and show that, when combined with the previous ones, they can boost the results….(More)”.

What you don’t know about your health data will make you sick

Curated on Posted on by Stefaan Verhulst

Jeanette Beebe at Fast Company: “Every time you shuffle through a line at the pharmacy, every time you try to get comfortable in those awkward doctor’s office chairs, every time you scroll through the web while you’re put on hold with a question about your medical bill, take a second to think about the person ahead of you and behind you.

Chances are, at least one of you is being monitored by a third party like data analytics giant Optum, which is owned by UnitedHealth Group, Inc. Since 1993, it’s captured medical data—lab results, diagnoses, prescriptions, and more—from 150 million Americans. That’s almost half of the U.S. population.

“They’re the ones that are tapping the data. They’re in there. I can’t remove them from my own health insurance contracts. So I’m stuck. It’s just part of the system,” says Joel Winston, an attorney who specializes in privacy and data protection law.

Healthcare providers can legally sell their data to a now-dizzyingly vast spread of companies, who can use it to make decisions, from designing new drugs to pricing your insurance rates to developing highly targeted advertising.

It’s written in the fine print: You don’t own your medical records. Well, except if you live in New Hampshire. It’s the only state that mandates its residents own their medical data. In 21 states, the law explicitly says that healthcare providers own these records, not patients. In the rest of the country, it’s up in the air.

Every time you visit a doctor or a pharmacy, your record grows. The details can be colorful: Using sources like Milliman’s IntelliScript and ExamOne’s ScriptCheck, a fuller picture of you emerges. Your interactions with the health are system, your medical payments, your prescription drug purchase history. And the market for the data is surging.

Its buyers and sharers—pharma giants, insurers, credit reporting agencies, and other data-hungry companies or “fourth parties” (like Facebook)—say that these massive health data sets can improve healthcare delivery and fuel advances in so-called “precision medicine.”

Still, this glut of health data has raised alarms among privacy advocates, who say many consumers are in the dark about how much of their health-related info is being gathered and mined….

Gardner predicted that traditional health data systems—electronic health records and electronic medical records—are less than ideal, given the “rigidity of the vendors and the products” and the way our data is owned and secured. Don’t count on them being around much longer, she said, “beyond the next few years.”

The future, Gardner suggested, is a system that runs on blockchain, which she defined for the committee as “basically a secure, visible, irrefutable ledger of transactions and ownership.” Still, a recent analysis of over 150 white papers revealed most healthcare blockchain projects “fall somewhere between half-baked and overly optimistic.”

As larger companies like IBM sign on, the technology may be edging closer to reality. Last year, Proof Work outlined a HIPAA-compliant system that manages patients’ medical histories over time, from acute care in the hospital to preventative checkups. The goal is to give these records to patients on their phones, and to create a “democratized ecosystem” to solve interoperability between patients, healthcare providers, insurance companies, and researchers. Similar proposals from blockchain-focused startups like Health Bank and Humanity.co would help patients store and share their health information securely—and sell it to researchers, too….(More)”.

Comparative Accuracy of Diagnosis by Collective Intelligence of Multiple Physicians vs Individual Physicians

Curated on Posted on by Stefaan Verhulst

Study by Michael L. Barnett et al in JAMA: “Is a collective intelligence approach of pooling multiple clinician and medical student diagnoses associated with improvement in diagnostic accuracy in online, structured clinical cases?

Findings  This cross-sectional study analyzing data from the Human Diagnosis Project found that, across a broad range of medical cases and common presenting symptoms, independent differential diagnoses of multiple physicians combined into a weighted list significantly outperformed diagnoses of individual physicians with groups as small as 2, and accuracy increased with larger groups up to 9 physicians. Groups of nonspecialists also significantly outperformed individual specialists solving cases matched to the individual specialist’s specialty….

Main Outcomes and Measures  The primary outcome was diagnostic accuracy, assessed as a correct diagnosis in the top 3 ranked diagnoses for an individual; for groups, the top 3 diagnoses were a collective differential generated using a weighted combination of user diagnoses with a variety of approaches. A version of the McNemar test was used to account for clustering across repeated solvers to compare diagnostic accuracy.

Conclusions and Relevance  A collective intelligence approach was associated with higher diagnostic accuracy compared with individuals, including individual specialists whose expertise matched the case diagnosis, across a range of medical cases. Given the few proven strategies to address misdiagnosis, this technique merits further study in clinical settings….(More)”.

So Many Nudges, So Little Time: Can Cost-effectiveness Tell Us When It Is Worthwhile to Try to Change Provider Behavior?

Curated on Posted on by Stefaan Verhulst

Paper by David Atkins: “Interest in behavioral economics has grown steadily within health care. Policy makers, payers, and providers now recognize that the decisions of patients and of their doctors frequently deviate from the strictly “rational” choices that classical economic theory would predict. For example, patients rarely adhere to the medication regimens or health behaviors that would optimize their health outcomes, and clinicians often make decisions that conflict with evidence-based recommendations or even the practices they profess to endorse. The groundbreaking work of psychologist Daniel Kahneman and his collaborator Amos Tversky raised attention to this field, which was accelerated by Kahneman’s 2002 Nobel Prize in economics and his popular 2011 book “Thinking Fast and Slow” which reached a much broader audience.

Behavioral economics examines cognitive, psychological, and cultural factors that may influence how we make decisions, resulting in behavior that another Nobel laureate, economist Richard Thaler, has termed “predictably irrational.” Principles from behavioral economics have been adopted to health care, including the role of heuristics (rules of thumb), the importance of framing, and the effects of specific cognitive biases (for example, overconfidence and status quo bias).

These principles have been incorporated into interventions that seek to use these insights to change health-related behaviors—these include nudges, where systems are redesigned to make the preferred choice the default choice (for example, making generic versions the default in electronic prescribing); incentive programs that reward patients for taking their medications on schedule or getting preventive interventions like immunizations; and specific interventions aimed at how clinicians respond to information or make decisions….(More)”.

Our data, our society, our health: a vision for inclusive and transparent health data science in the UK and Beyond

Curated on Posted on by Stefaan Verhulst

Paper by Elizabeth Ford et al in Learning Health Systems: “The last six years have seen sustained investment in health data science in the UK and beyond, which should result in a data science community that is inclusive of all stakeholders, working together to use data to benefit society through the improvement of public health and wellbeing.

However, opportunities made possible through the innovative use of data are still not being fully realised, resulting in research inefficiencies and avoidable health harms. In this paper we identify the most important barriers to achieving higher productivity in health data science. We then draw on previous research, domain expertise, and theory, to outline how to go about overcoming these barriers, applying our core values of inclusivity and transparency.

We believe a step-change can be achieved through meaningful stakeholder involvement at every stage of research planning, design and execution; team-based data science; as well as harnessing novel and secure data technologies. Applying these values to health data science will safeguard a social license for health data research, and ensure transparent and secure data usage for public benefit….(More)”.

When Patients Become Innovators

Curated on Posted on by Stefaan Verhulst

Article by Harold DeMonaco, Pedro Oliveira, Andrew Torrance, Christiana von Hippel, and Eric von Hippel: “Patients are increasingly able to conceive and develop sophisticated medical devices and services to meet their own needs — often without any help from companies that produce or sell medical products. This “free” patient-driven innovation process enables them to benefit from important advances that are not commercially available. Patient innovation also can provide benefits to companies that produce and sell medical devices and services. For them, patient do-it-yourself efforts can be free R&D that informs and amplifies in-house development efforts.

In this article, we will look at two examples of free innovation in the medical field — one for managing type 1 diabetes and the other for managing Crohn’s disease. We will set these cases within the context of the broader free innovation movement that has been gaining momentum in an array of industries1 and apply the general lessons of free innovation to the specific circumstances of medical innovation by patients….

What is striking about both of these cases is that neither commercial medical producers nor the clinical care system offered a solution that these patients urgently needed. Motivated patients stepped forward to develop solutions for themselves, entirely without commercial support.4

Free innovation in the medical field follows the general pattern seen in many other areas, including crafts, sporting goods, home and garden equipment, pet products, and apparel.5 Enabled by technology, social media, and a keen desire to find solutions aligned with their own needs, consumers of all kinds are designing new products for themselves….(More)”


Deep Medicine: How Artificial Intelligence Can Make Healthcare Human Again

Curated on Posted on by Stefaan Verhulst

Book by Eric Topol: “Medicine has become inhuman, to disastrous effect. The doctor-patient relationship–the heart of medicine–is broken: doctors are too distracted and overwhelmed to truly connect with their patients, and medical errors and misdiagnoses abound. In Deep Medicine, leading physician Eric Topol reveals how artificial intelligence can help. AI has the potential to transform everything doctors do, from notetaking and medical scans to diagnosis and treatment, greatly cutting down the cost of medicine and reducing human mortality. By freeing physicians from the tasks that interfere with human connection, AI will create space for the real healing that takes place between a doctor who can listen and a patient who needs to be heard. Innovative, provocative, and hopeful, Deep Medicine shows us how the awesome power of AI can make medicine better, for all the humans involved….(More)”.