Wednesday, September 2, 2015

Big Data, Health Law, & Bioethics (conference & RFP)

Petrie-Flom Center 2016 Annual Conference:
Big Data, Health Law, & Bioethics
May 6 and possibly May 7, 2016
Wasserstein Hall, Milstein East ABC, Harvard Law School, Cambridge, MA

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for their 2016 annual conference, entitled: “Big Data, Health Law, and Bioethics.”  This year’s conference is organized in collaboration with the Berkman Center for Internet and Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.

Conference Description

“Big Data” is a phrase that has been used pervasively by the media and the lay public in the last several years. While many definitions are possible, the common denominator seems to include the “three V’s” – Volume (vast amounts of data), Variety (significant heterogeneity in the type of data available in the set), and Velocity (speed at which a data scientist or user can access and analyze the data).

Defined as such, health care has become one of the key emerging use cases for big data. For example, Fitbit and Apple’s ResearchKit can provide researchers access to vast stores of biometric data on users from which to test hypotheses on nutrition, fitness, disease progression, treatment success, and the like. The Centers for Medicare & Medicaid Services (CMS) have vast stores of billing data that can be mined to promote high value care and prevent fraud; the same is true of private health insurers.  And hospitals have attempted to reduce re-admission rates by targeting patients that predictive algorithms indicate are at highest risk based on analysis of available data collected from existing patient records.
Underlying these and many other potential uses, however, are a series of legal and ethical challenges relating to, among other things, privacy, discrimination, intellectual property, tort, and informed consent, as well as research and clinical ethics.

This conference, and anticipated edited volume, will aim to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.

Call for Abstracts

We welcome submissions on both broad conceptual questions and more specific policy issues.  Potential topics include:

  • Research ethics and regulation relating to the generation and use of big data in health care settings
  • Hospital and physician use of big data to assist treatment decisions, including the creation and deployment of predictive analytics engines for health care
  • Big data and computer decision aids for treatment (including physician liability and manufacturer liability)
  • Health big data and re-identification risk
  • Big data and health insurance (including protections against discrimination)
  • Forensic use of genomic and other biometric big data
  • Big data commercialization, ownership, and intellectual property in the health care context
  • Big data, data sharing, and citizen science for health research
  • HIPAA and other privacy protections for health big data
  • Legal considerations with data security for big data in health care settings
  • Ethical and legal use and creation of big data databases by government providers or payers of health care (CMS, the VA, etc.)
  • Mobile health uses of big data and FDA regulation
  • Big data and the regulation of personalized medicine
  • Big data, genetics, and biospecimen banking
  • Comparative law perspectives on big data and health care: what can the U.S. learn?
  • Regulating health big data across international borders and multiple legal regimes
  • How ethics and regulatory training (especially for care providers) should adapt to increased use of big data in health care and health research
  • Big data uses in public health research and practice 

Please note that this list is not meant to be exhaustive; we hope to receive abstracts related to the conference’s general theme even if a particular topic was not specifically listed here.  However, proposals that lack a clear linkage to all three aspects of the conference – health care, big data, and either law or medical ethics will not be considered.  Moreover, our main focus is on the setting of the United States, although we remain interested in comparative approaches and ways in which a lack of international harmonization may cause problems.  Papers that focus on ethics should include substantial discussion of policy implications.  Relatedly, law will be treated broadly to include governmental policy decisions more generally. Abstracts should explicitly address why big data is crucial to the project rather than merely being a form of an issue that exists with small data.  Successful abstracts will propose or outline an argument/position, rather than merely stating a topic.

In an effort to encourage interdisciplinary and international dialogue, we welcome submissions from legal scholars and lawyers, of course, but also from bioethicists, philosophers, scholars of computer and other information sciences, sociology, government officials and staff, international scholars and regulators discussing how their systems have handled these issues in ways that the US may learn from, and others who have a meaningful contribution to make on this topic.  We welcome submissions from advocacy organizations, think tanks, and others outside academia, but emphasize that this is a scholarly conference, and abstracts/papers will be held to academic standards of argumentation and support.

How to Participate

If you are interested in participating, please send a 1-page abstract of the paper you would plan to present to petrie-flom@law.harvard.edu as soon as possible, but not later than December 1, 2015.   If your abstract is selected, your final paper will be due on April 4, 2016, and you will be assigned a presentation slot for the conference.  Please note that all presenters must provide a full final draft in order to participate and that presenters are expected to attend the conference for its full duration. Depending on how many abstracts are selected, the conference may run for part of a second day; therefore, please hold both May 6 and May 7, 2016 open.  We will pay travel expenses for presenters who must travel to Cambridge; co-authored papers must name a single presenter.

In the past, we have successfully turned several of our conferences into edited volumes (e.g., with Oxford, MIT, Columbia, and Johns Hopkins University presses). If such a volume arises out of this conference, our expectation is that conference presenters will publish their papers with us as part of the edited volume.  Those who do not wish their work to appear in a potential edited volume should so indicate on the abstract. We will accept conference papers of all lengths and styles (e.g., law review, medical, philosophy, or policy journal, etc.), but presentations will be limited to about 15 minutes and chapters in conference volumes are generally limited to about 5,000 words, including references.  Previous conference participants have been able to publish their submissions in different formats in multiple venues, for example both as a short book chapter and a longer law review article.  However, the version that will be used for our edited volume should not have been published previously or be planned to publish separately.

Registration

The conference is free and open to the public, but seating is limited. Registration will open in January 2016. For more information, check out the conference website!

Questions

Please contact Holly Fernandez Lynch, Executive Director, Petrie-Flom Center: hlynch@law.harvard.edu, 617-384-5475.

SY Tan on Medical Futility (video)

Prof S.Y. Tan (St. Francis International Center for Healthcare Ethics) gave a lecture on medical futility at KTPH in Singapore.  This is a pretty basic and accessible overview of the issues.  



Gramp - Just before [EOL in Art 114]


Tuesday, September 1, 2015

New Amended Texas Advance Directives Act Starts Today

The dispute resolution provisions in the 1999 Texas Advance Directives Act have not been amended since 2003.  But the 2015 amendment (H.B. 3074) take effect today.  

TADA now exempts clinically assisted nutrition and hydration from the scope of life-sustaining treatment subject to Tex. Health & Safety Code 166.046.

Texas Gov. Greg Abbott signed more than 1,200 bills into law this session

Read more here: http://www.star-telegram.com/news/state/texas/article32752407.html#storylink=cpy

Eighth Annual Pediatric Bioethics Conference (Nov. 6, 2015)

I am delighted to be a part of the Eighth Annual Pediatric Bioethics Conference.


Gramp - 1954 vs 1974 [EOL in Art 113]

This is from the back cover of Dan and Mark Jury's 1976 book Gramp.


Monday, August 31, 2015

Kevorkian "Fever" [EOL in Art 112]


Revisiting CPR Survival Rates Depicted on Popular TV Shows

Jaclyn Portanova and colleagues at the USC Davis School of Gerontology have just published  "It Isn’t Like This on TV: Revisiting CPR Survival Rates Depicted on Popular TV Shows" in Resuscitation.  Compared to Diem & Lantos' similar 1996 study, accuracy rates of television CPR depictions appear to not be improving. 

The authors found that Grey's Anatomy and House portrayed CPR as more effective than actual rates. Overall, the shows portrayed an immediate survival rate nearly twice that of actual survival rates. Inaccurate TV portrayal of CPR survival rates may misinform viewers and influence care decisions made during serious illness and at end of life.


"Public perceptions of cardiopulmonary resuscitation (CPR) can be influenced by the media. Nearly two decades ago, a study found that the rates of survival following CPR were far higher in popular TV shows than actual rates."


"In recent years, major strides toward enhanced education and communication around life sustaining interventions have been made. This study aimed to reassess the accuracy of CPR portrayed by popular medical TV shows."


"Three trained research assistants independently coded two leading medical dramas airing between 2010 and 2011, Grey's Anatomy and House. CPR was depicted 46 times in the 91 episodes, with a survival rate of 69.6%. Among those immediately surviving following CPR, the majority (71.9%) survived to hospital discharge and 15.6% died before discharge. Advance directive discussions only occurred for two patients, and preferences regarding code status (8.7%), intubation (6.5%) and feeding (4.3%) rarely occurred."


Here is one nice counterexample: