protest sign at supreme court

Misinformed Consent: How the Supreme Court Bolsters Paternalistic Medicine

The Supreme Court this week struck down California’s Reproductive FACT Act in National Institute of Family and Life Advocates v. Becerra, which required Crisis Pregnancy Centers (CPC) to inform their prospects that they are not medical providers and post a sign informing them that the state provides free or low cost access to prenatal and preventative medicine, including abortion.

The law was passed in reaction to what California saw as deceptive and harmful tactics employed by the CPCs in order to mislead women seeking abortions to come to them instead. These clinics are often funded by the state and federal government. While many of these centers offer some medical services, importantly, they are not healthcare providers and usually do not have a doctor on the premises. This means that not only are the women who go to them at risk of receiving faulty care, the CPCs do not face the same consequences a doctor would for misleading their patients.

Read More

supervised injection site

NIMBYism continues to factor into supervised injection site policies

As a major tool in harm reduction policy connected to opioid and substance misuse, more than 30 states have implemented syringe exchange programs, or SEPs.

Surmounting or, in many cases, bypassing the considerable legal and political obstacles has proved a challenge for states, whether they succeeded in enacting SEPs or not. While, given the opioid crisis, SEPs are more important than ever, they do have limitations.

Read More

The Intersection of Human Trafficking and Immigration

57,000.

That is the appalling number of individuals estimated to be involved in human trafficking in the United States, and it is more than likely a relatively conservative estimate.

Even more appalling is that there are approximately 50 million people who are victims of human trafficking worldwide. This is an industry driven by sex, with 80 percent of trafficked individuals engaged in sex trafficking of some form.

Woman account for about 80 percent of individuals involved in sex-trafficking, with some estimates stating that a quarter of these cases involve minor children. The average age for females at the time of entry into sex-trafficking is thought to be between 17–19 years old.

Victims of both sex and labor trafficking include United States citizens, but also many foreign nationals, mostly from Mexico, Central and South America, as well as the Caribbean. Now more than ever, these victims of a horrific crime are at significant risk, not just from their traffickers but from something else that can cause significant harm: the fear of deportation.

Read More

doctor and patient talk

The non-capture capture of “patient voice.” Isn’t it ironic?

Register here for this weeks’s event, “Putting Patients at the Center of Research: Opportunities and Challenges for Ethical and Regulatory Oversight”

In a previous life I was a headline writer, so I have to give props for the title of this Friday’s Petrie-Flom panel: “Patients and Conflict of Interest: How Can We Keep the Patient’s Voice from Being ‘Captured’?

That is, how do you avoid “capturing” the patient voice when “capturing” the patient voice is the whole point of Patient Centered Outcomes Research? And yet this is a central challenge to bringing expertise unique to the receiving end of medicine and research into all levels of the process.

Read More

Adverse Health Event Reporting in Minnesota a Valuable Tool

By John Tingle

doctors performing surgery
Medical errors are a common cause of death globally. (thinkpanama/flickr)

“Medical errors are the third leading cause of death in the United States,” says a new report by the World Health Organization. And in the United Kingdom, “recent estimations show that on average, one incident of patient harm is reported every 35 seconds.”

Patient safety remains an issue of concern for all countries across the globe. But by observing what other countries do and report about patient safety we can avoid the costly mistake of trying to reinvent the wheel when information is already available about important trends.

The Minnesota Department of Health (MDH) have recently published their 14th Annual Public Report on Adverse Health Events in Minnesota. The report contains a lot of detailed patient safety information, analysis, and trends which will be of use to health carers and patient safety policy developers everywhere.

Read More

Compulsory Genetic Testing for Refugees: No Thanks

By Gali Katznelson

lab worker testing dna
DNA tests are not perfect and they can be vulnerable to manipulation. The UNHCR says genetic testing is an invasion of privacy. (Photo by andjic/Thinkstock)

Recent reports claim that Attorney General Jeff Sessions is considering using genetic testing to confirm the relationships of children who enter the country with adults to determine if they share a genetic relationship.

The website the Daily Caller reported that Sessions suggested in a radio interview that the government might undertake genetic testing of refugees and migrants in an effort to prevent fraud and human trafficking.

This proposal is problematic, not only because DNA testing is unreliable and vulnerable to hacking, it is also an invasion of privacy and flies in the face of guidelines from the United Nations’ refugee agency.

Read More

Investigating Conflicts of Interest in Patient-Centered Outcomes Research

By I. Glenn Cohen

The Patient Centered Outcomes Research Institute (PCORI) was established under the Affordable Care Act. Its goal is to fund and encourage Patient-Centered Outcomes Research (PCOR), understood as evaluating questions and outcomes that are meaningful not just to researchers, but to patients and caregivers as well.

One key way of achieving this is to involve patients as personnel in research projects as advisors, consultants, or team members involved in any aspect of research, from topic development through study design, implementation, interpretation, and dissemination.

But where do these patients come from? How representative are they of the patients who will ultimately participate in the study?

Read More

What is Patient-Centered Outcomes Research? What Ethical Issues Arise in its Conduct?

By Joel Weissman

Register here for this weeks’s event, “Putting Patients at the Center of Research: Opportunities and Challenges for Ethical and Regulatory Oversight”

Today it is not unusual for patients to expect to be engaged in making decisions about their own health care, in consultation with their doctors. This is commonly referred to as patient-centered care, and recognizes that patients are the best source of information about their needs and preferences.

A relatively newer concept is patient involvement in research on healthcare.

Traditionally, healthcare research has focused on critical events like death or complications, or physiological data from laboratory tests. But patients may be equally (and sometimes more) concerned about harder-to-measure results like quality of life, time spent at home with their families, or the ability to return to work.

Patient-centered outcomes research (PCOR) recognizes that to better understand these kinds of issues, scientists should consult patients about the design and conduct of research. Therefore, PCOR is quickly becoming the standard.

Read More

The Health Imperative: Reunite Migrant Children with their Parents

By Gali Katznelson

Japanese family awaits evacuation 1942
A Japanese family awaits an evacuation bus to an internment camp in 1942. Children who spent time in the camps have high incidence of trauma and health problems, studies have shown. Photo via US National Archives.

Former first lady Laura Bush published an op-ed in the Washington Post where she reminded us that today’s mass detention centers for children whose parents are accused of illegally crossing the border is a public health crisis — one we have seen before.

Read More

Prescription Monitoring Programs: HIPAA, Cybersecurity and Privacy

By Stephen P. Wood

Privacy, especially as it relates to healthcare and protecting sensitive medical information, is an important issue. The Health Insurance Portability and Accountability Act, better know as HIPAA, is a legislative action that helps to safeguard personal medical information. This protection is afforded to individuals by the Privacy Rule, which dictates who can access an individual’s medical records, and the Security Rule, which ensures that electronic medical records are protected.

Access to someone’s healthcare records by a medical provider typically requires a direct health care-related relationship with the patient in question. For example, if you have a regular doctor, that doctor can access your medical records. Similarly, if you call your doctor’s office off-hours, the covering doctor, whom may have no prior relationship with you, may similarly access these records. The same holds true if you go to the emergency department or see a specialist. No provider should be accessing protected information however, without a medical need.

Read More