Facebook Should ‘First Do No Harm’ When Collecting Health Data

Following the Cambridge Analytica scandal, it was reported that Facebook planned to partner with medical organizations to obtain health records on thousands of users. The plans were put on hold when news of the scandal broke. But Facebook doesn’t need medical records to derive health data from its users. It can use artificial intelligence tools, such as machine learning, to infer sensitive medical information from its users’ behavior. I call this process mining for emergent medical data (EMD), and companies use it to sort consumers into health-related categories and serve them targeted advertisements. I will explain how mining for EMD is analogous to the process of medical diagnosis performed by physicians, and companies that engage in this activity may be practicing medicine without a license.

Last week, Facebook CEO Mark Zuckerberg testified before Congress about his company’s data collection practices. Many lawmakers that questioned him understood that Facebook collects consumer data and uses it to drive targeted ads. However, few Members of Congress seemed to understand that the value of data often lies not in the information itself, but in the inferences that can be drawn from it. There are numerous examples that illustrate how health information is inferred from the behavior of social media users: Last year Facebook announced its reliance on artificial intelligence to predict which users are at high risk for suicide; a leaked document revealed that Facebook identified teens feeling “anxious” and “hopeless;” and data scientists used Facebook messages and “likes” to predict whether users had substance use disorders. In 2016, researchers analyzed Instagram posts to predict whether users were depressed. In each of these examples, user data was analyzed to sort people into health-related categories.

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The Danger of Speaking for the Dying Patient with “Intellectual Disabilities”

After suffering from Alzheimer’s disease for more than two decades, my grandma quietly passed away at a nursing home in California several years ago. This may sound like a story too common to tell in the United States. However, my grandma never wanted to go to a nursing home in the first place. As someone who spent the majority of her life in China, she only immigrated to the United States to reunite with her family after my grandpa passed. When her conditions first developed, her own children (my extended family who lived with her) considered her a burden and liability, and sent her away against her will – a stark violation of Confucian filial piety cherished in my culture. After being admitted to a public nursing home with very few Mandarin speaking staff and patients, her condition deteriorated rapidly, partly as a result of language barriers and general isolation from family and friends. She soon lost most of her basic functioning and remained in a borderline vegetative state for the last few years of her life.

I could not help but think about my grandma when I read a recently published piece in New York Times. In “A Harder Death for People with Intellectual Disabilities,” Tim Lahey, M.D., argues that current laws make it too difficult for the “loved ones” and legal guardians of patients with “intellectual disabilities” to make end-of-life decisions on behalf of patients who cannot speak for themselves. Based on his own experience with patients in intensive care units, he criticizes the burdensome legal procedures required in some states to allow legal guardians to “decline life-sustaining therapies” and medical providers to “avoid giving unwanted care that isn’t likely to heal” these patients. From his point of view, questions a judge may ask such as “how sure is the guardian or family member of the patient’s wishes?” and “what’s the doctors’ best estimate at a prognosis?” are slowing down the “prompt, patient-centered, bedside care that all of us deserve.” Continue reading

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare.  Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

A number of policy initiatives have sought to increase the use of decision aids as an effective way to further shared decision making and person-centered care. Washington is the first – and so far only – state to recognize and act on this opportunity by establishing a process to certify decision aids across the health continuum, including during serious illness when people are the most vulnerable. The program will examine the Washington experience and also explore policy barriers for replication of the Washington model at the state and national levels.

This event is free and open to the public, but seating is limited and registration is required. Register now!

This event is part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 130 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity and improve public and private policies in advanced illness care.

Learn more about the event here!

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare.  Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

A number of policy initiatives have sought to increase the use of decision aids as an effective way to further shared decision making and person-centered care. Washington is the first – and so far only – state to recognize and act on this opportunity by establishing a process to certify decision aids across the health continuum, including during serious illness when people are the most vulnerable. The program will examine the Washington experience and also explore policy barriers for replication of the Washington model at the state and national levels.

This event is free and open to the public, but seating is limited and registration is required. Register now!

This event is part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 130 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity and improve public and private policies in advanced illness care.

Learn more about the event here!

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics
June 1, 2018 8:00 AM – 5:00 PM
Wasserstein Hall, Milstein East ABC (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1987).

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2018 annual conference, entitled: “Beyond Disadvantage: Disability, Law, and Bioethics.” This year’s conference is organized in collaboration with the Harvard Law School Project on Disability.

Conference Description

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

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The Abortion Information Wars

by Clíodhna Ní Chéileachair

The Supreme Court is currently considering National Institute of Family and Life Advocates (NIFLA) v. Becerra, a challenge by abortion opponents to a California law that requires unlicensed centers in the state to inform potential patients about whether the center is medically licensed or not, and that requires clinics offering pregnancy-based care to give accurate information about the availability of low cost, or free government contraceptive and abortion care. The law is an attempt to target clinics which purport to offer comprehensive pre-natal care and pregnancy counselling, while in actuality pursuing an agenda that typically discourages women from availing of abortion care through biased counselling, false descriptions of the risks of abortions and descriptions of foetal development that are inaccurate. The number of these clinics nationwide is estimated at 4,000 – far outstripping the number of actual abortion clinics in the US – and are frequently taxpayer funded. NIFLA claims that the law targets the organisation’s free speech rights and unfairly targets the political beliefs of clinic owners and operators.

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The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare.  Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

Continue reading

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics
June 1, 2018 8:00 AM – 5:00 PM
Wasserstein Hall, Milstein East ABC (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1987).

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2018 annual conference, entitled: “Beyond Disadvantage: Disability, Law, and Bioethics.” This year’s conference is organized in collaboration with the Harvard Law School Project on Disability.

Conference Description

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

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Institutional Conscience, Individual Conscience

The debate over compulsory coverage for contraception rages on, with Notre Dame changing their policy on coverage for birth control again under Trump executive order allowing them to do so. The university had initially claimed that a requirement mandating them to provide contraceptive coverage was a burden on its exercise of religion, and discontinued coverage last October, before quickly reversing course after a protracted outcry from students, faculty and staff. Over 17,000 people are currently covered by the institution’s insurance plan. The university’s current position is to cut coverage for birth control that the university considers to be inconsistent with Catholic teachings; continuing coverage for ‘simple contraception’ while discontinuing coverage for contraception that ‘kills a fertilized egg’.  

The Affordable Care Act required that insurers cover the cost of contraception without any out-of-pocket costs by the claimant, with exemptions for houses of worships and closely-held for-profits, with the proviso that organisations that wished to avail of the exemption must notify the federal government, who would then contract directly with the insurer to provide unimpeded access to birth control for employees and their dependents. Under Trump administration rules, the exemption has been expanded to include non-profit organizations and for-profit companies, including public corporations, and a separate HHS rule allows similar moral objections for most institutions.

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The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare.  Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

A number of policy initiatives have sought to increase the use of decision aids as an effective way to further shared decision making and person-centered care. Washington is the first – and so far only – state to recognize and act on this opportunity by establishing a process to certify decision aids across the health continuum, including during serious illness when people are the most vulnerable. The program will examine the Washington experience and also explore policy barriers for replication of the Washington model at the state and national levels.

This event is free and open to the public, but seating is limited and registration is required. Register now!

This event is part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 130 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity and improve public and private policies in advanced illness care.

Learn more about the event here!

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare. Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

A number of policy initiatives have sought to increase the use of decision aids as an effective way to further shared decision making and person-centered care. Washington is the first – and so far only – state to recognize and act on this opportunity by establishing a process to certify decision aids across the health continuum, including during serious illness when people are the most vulnerable. The program will examine the Washington experience and also explore policy barriers for replication of the Washington model at the state and national levels.

This event is free and open to the public, but seating is limited and registration is required. Register now!

This event is part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 130 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity and improve public and private policies in advanced illness care.

Learn more about the event here!

Culture, Medicine, and Psychiatry

By Yusuf Lenfest

Professor Robert Sapolsky, a professor of biology and neurology at Stanford University, rightly identifies depression as a particularly crippling disease insofar as it affects one’s very response mechanisms and modes of coping, namely, experiences of gratitude, joy, pleasure—at bottom, some of the key emotions of resistance and healing. In discussing depression, he provides an overview of the biological and chemical elements, touching on the role of neurotransmitters (epinephrine, dopamine, serotonin) in depression, and a summary of the psychological elements (and their relation to the biological); as such, his description focuses primarily on physical and biological explanations. However, to examine depression or any psychological illness in purely physical and biological terms misses a crucial element, namely: human culture, lived experience, and the different modes or methods of social thought. Culture plays a primary role in defining many mental disorders such as schizophrenia and psychosis, and even the symptoms, intensities, or typologies of depression, according to Arthur Kleinman in his seminal Writing at the Margin: Discourse Between Anthropology and Medicine.

Despite these findings, Western biomedicine by and large continues to analyze mental health in clinical and biological terms. This is not insignificant given the statistics:

  • Approximately 1 in 5 adults in the U.S.- 43.8 million or 18.5% – experiences mental illness in a given year.
  •  Approximately 1 in 5 youth aged 13–18 (21.4%) experiences a severe mental disorder at some point during their life. For children aged 8–15, the estimate is 13%.
  • Only 41% of adults in the U.S. with a mental health condition received mental health services in the past year. Among adults with a serious mental illness, 62.9% received mental health services in the past year.
  • Just over half (50.6%) of children aged 8-15 received mental health services in the previous year. (National Alliance on Mental Health)

Current trends in medicine suggest that the medical community broadly speaking is ill-equipped to adequately tackle this rising trend, especially with regard to the treatment of diverse patients from various cultures, religions, and social circumstances. To best address the problem, the medical community – both on the level of policy and practice -ought to take steps to understand and treat mental illness more holistically.

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2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics
June 1, 2018 8:00 AM – 5:00 PM
Wasserstein Hall, Milstein East ABC (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1987).

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2018 annual conference, entitled: “Beyond Disadvantage: Disability, Law, and Bioethics.” This year’s conference is organized in collaboration with the Harvard Law School Project on Disability.

Conference Description

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

Continue reading

Illness, Disability, and Dignity

By Yusuf Lenfest

Medicine is meant to heal our ailments and treat our illnesses. Our deep knowledge of the body and the numerous mechanisms that contribute or correlate to good health is considered a triumph of the medical sciences. We can now perform transplants with relative ease, offer prosthetics to those who require them, and even cure some forms of blindness. But so much of modern medicine today is built around quantitative data—family histories, success and morbidity rates, pathologization, statistical analyses—without much conscious consideration of how one understands, copes, or derives meaning from their experience. True, such data is gathered for the purposes of more accurate diagnoses and as the first defense against an illness or medical condition; but physicians are taught to concentrate on the cure, and while few would dispute that that is certainly a good thing, we also ought to keep in mind that excessive focus on a default measure of “normal” does not necessarily allow us to express the diverse ways of being in the world nor adequately account for the ways in which people embrace their conditions.

Some autistic individuals, for example, believe that autism should be accepted as a difference and not as a disorder. That the autism spectrum is precisely that—a spectrum—is important: on the one hand, statistical analysis may reveal that these individuals are in the minority versus the average population, only 1%; but on the other hand, to take a different perspective, it means merely that the characteristics of these individuals manifest in a way that is atypical with how the institution and culture of medicine classifies them. Lest we forget, medicine is part of the dynamic structure of society and social norms—in the background and the foreground—of knowledge-making, and it is imbedded in place and society, as part of the structures existing in institutions. It is not possible to consider theoretical or epistemological claims apart from practical knowledge and applied sciences. Continue reading

Why Are So Many American Women Dying in Childbirth?

By Clíodhna Ní Chéileachair

In November Serena Williams, indisputably one of the greatest – if not the greatest – tennis player in history gave birth to her daughter by emergency Caesarean section. After the surgery, Williams reported to an attending nurse that she was experiencing shortness of breath and immediately assumed she was experiencing pulmonary embolism. The star athlete has a history of blood clots and had discontinued blood thinners before the surgical delivery. Contrary to William’s requests for a CT scan and blood thinners, medical staff assumed that pain medication had made her confused. A later CT scan confirmed Williams’ self-diagnosis. Stripping out the fact of Williams’ identity turns this near-miss into a terrifyingly common story in US maternal care, albeit one with a happier ending than many. The global trend in maternal death rates – the rate of women dying in childbirth and post-childbirth – has rapidly decreased over the past 15 years. At the same time, the US, despite recording one of the highest per capita income levels in the world, has one of the highest maternal mortality rates in the developed world.

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Medical Abortions and the Internet

by Clíodhna Ní Chéileachair

Early last summer, Facebook removed Women on Web’s page for ‘promoting drug use’. The Amsterdam-based organization connects women with doctors who prescribe the pills necessary for medical abortions and provides information on taking abortion pills, on contraception and on accessing abortion services in states where access to safe abortions is restricted or illegal. This followed an earlier interaction in which Facebook removed a photo of the organization’s founder, Rebecca Romperts, superimposed with instructions on the use of the pills. Facebook later apologized and reinstated the Facebook page, claiming that the removal was an error, and that the page served Facebook’s function of allowing individuals to organize and campaign for the issues that matter most to them.

Leaving aside the question of whether it was indeed an error, WoW have never existed without controversy. In February of last year, their sister organization Women on Waves made headlines when their boat was detained by the Guatemalan authorities while campaigning in Guatemalan waters. Women on Waves provides medical abortions to women once they are in international waters and thus operating under Dutch law, which allows abortions up to 21 weeks. Both organizations will provide access to abortion services up to 9 weeks, using a combination of medicines – misoprostol and mifepristone – which together induce abortion. The WHO estimates that the drug combination is used by 26 million women globally per year and is recommended as an abortifacient up to 9 weeks of pregnancy. Women on Waves are one of many organizations that aim to allow women to access abortion services that are either explicitly illegal, or practically unavailable in their home countries. There are risks associated with taking the drug combination, but these are minimal, and far riskier is the danger of leaving women with access to illegal abortions which is often the reality of full abortion bans. In Guatemala, 65,000 women have illegal abortions every year, with a third of that number admitted to hospitals from complications associated with the backstreet procedure. A medical abortion before 10 weeks is safer than childbirth, and as safe as a natural miscarriage. Both drugs have been on the WHO’s list of essential medicines since 2005. Studies show a high level of effectiveness in self-sourced and administered abortion pills, such as the service offered by Women On Web, and outcomes generally compare favorably with in-clinic administration. Underscoring the importance of safe access to the drug combination, use of the pills is often studied as a self-administration method alongside getting punched in the stomach, taking herbs or homeopathic medicines, deliberately taking a high dose of hormonal pills, alcohol and illegal drugs.

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Will the Sun Shine All Over Canada? Making Transparent the Financial Relationships of the Medical Industry (Part 2: Towards Effective Transparency)

By Jean-Christophe Bélisle-Pipon

As detailed in Part 1, Ontario government just enacted the Health Sector Payment Transparency Act, a Canadian first in terms of transparency. The act requires that “transfers of value” (or payments), related to medical products (drugs and medical devices), between a payor and a recipient be reported to the Health Ministry. The Act gives the Ministry unprecedented powers to require, analyze, and publish such data online.

A Transformational Act?

Will this act radically transform the practices and the public knowledge that we have about the financial relations of the medical industry? The effective implementation of the regulations will tell us. However, the fact that Innovative Medicines Canada (formerly known as Rx&D, IMC is the organization representing the interests of the pharmaceutical industry in Canada, like PhRMA in the US) has concerns about the Act is a rather positive sign that this legislation might result into pro-social changes. IMC is invoking both ideological concerns (industry’s interactions with HCPs imply cooperation rather than influence) and logistical concerns (“if the threshold for payments is low, a sales representative could easily lose a receipt and forget to report it”), as well as its  own commitment to limiting undue influences. Continue reading

Will the Sun Shine All Over Canada? Making the Financial Relationships of the Medical Industry Transparent (Part 1: Theoretical Transparency)

By Jean-Christophe Bélisle-Pipon

While Canada is often viewed positively for its public, comprehensive, universal, and accessible health care system, not all is rosy. Canada often lags behind other countries in terms of pharmaceutical policies. Sometimes, this is advantageous (e.g., delaying the approval of a product to wait for more clinical data or real-world efficiency, so to better assess risk-benefit and determining the maximum selling price), but more often simply a problem: until recently, transparency in Canada was more a buzzword than a strong and assumed government stance.

However, a few days ago in Ontario, the omnibus Strengthening Quality and Accountability for Patients Act received royal assent, thus enacting the Health Sector Payment Transparency Act. This clearly marked the beginning of shedding light on the financial relationships and payments to health care providers and organizations made by the medical industry (pharmaceutical and medical device companies), the explicit goal being to strengthen patient trust in the health care system (including research and education activities) by allowing patients to assess whether their health care providers are subject to influence by industry and to foster more informed choice. While the United States enacted the Physician Payments Sunshine Act (PPSA) in 2010, which requires payment disclosure, this is a first in Canada.

The main provisions of the Act Continue reading

Morality, Maturity, and Abortion Access in the US

by Clíodhna Ní Chéileachair

In the complex web of restrictions on abortion access, parental consent laws and judicial bypass mechanisms play a small, but hugely significant part. States are entitled to enact parental consent and notification laws in relation to abortion care for minors, as long as they allow minors to ‘bypass’ this requirement judicially, an attempt to account for the myriad circumstances in which it will be impossible, difficult or dangerous for teens to tell their parents about their pregnancy and their wish to end it. Finding different justifications in different contexts, some laws appeal to the perceived immaturity of the individual in arriving at a decision without adult intervention; other legal schemes emphasize the critical importance of respecting the family unit, and by extension, the ability of parents to determine the medical treatment their child will receive. The exact stats, state by state, are available here.

The patchwork regime which governs the US rules on abortion access, administered by local courts presiding over the individual applications of pregnant teenagers, is a highly dysfunctional one, where standards of judgment can be entirely capricious. Judges are, after all, not medical professionals, nor are they therapists, health experts or developmental psychologists. The standard criteria pronounced upon by a judge at a bypass hearing is whether the minor is ‘mature enough, and well enough informed to make her abortion decision, in consultation with her physician, independent of her parents knowledge’ or that ‘even if she is not able to make this decision independently, the desired abortion would be in her best interests’. The gateway for unchecked judicial discretion is gaping. Markers of maturity are wholly subjective determinations, as are the metrics to determine whether a minor is sufficiently informed, or where her best interests lie. After all, for a staunchly anti-abortion judge, it is entirely possible that no-one could be informed about the process of abortion and yet rationally seek it, or that it could never be in an individual’s best interests to receive abortion care as a minor. The controlling law doesn’t foreclose on these possibilities.

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Ireland’s Abortion Referendum and Medical Care in Pregnancy

By Clíodhna Ní Chéileachair

This week, Ireland made international headlines as the governing political party announced a date-range for a referendum on the Eighth Amendment to the Irish Constitution, the provision which recognizes a fetal right to life, and places it on an equal footing to the right to life of the woman carrying the fetus. The move wasn’t a surprise to Irish voters – the referendum had been promised by Taoiseach Leo Varadkar since his election last June, and comes after decades of protest and organization by a multitude of activist groups, protesting what they view as an archaic, unworkable and agency-destroying constitutional provision that has led to the exporting of abortion care for Irish woman to the UK and Netherlands, and the deaths of women in Ireland. The implications of the Eighth Amendment for access to abortion care are obvious enough – it is illegal in almost all cases. Less prominent has been the pronounced effect that this constitutional ban on abortion has had for medical treatment and care in pregnancy, where the doctor involved is, constitutionally speaking, treating two patients with equal rights to life.

The only scenario in which an abortion in Ireland is legally permissible is in cases where the woman’s life is at risk from the continuance of the pregnancy. In all other cases, including cases where the fetus is non-viable, where the pregnancy is a result of rape or incest, or where the fetus will risk the health of the woman, but not her life, abortion is illegal. Criminal punishment for illegally procuring an abortion runs to a prison term of 14 years, which includes doctors who provide illegal treatment. Women who can afford it travel to the United Kingdom to avail of abortion services there, but doctors in Ireland cannot legally refer their patients to clinics in the UK, even in cases where continuing the pregnancy risks the health of the woman. It is unknown how many women have ended a pregnancy with illegal, imported abortion pills.

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