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Column: In the middle of a race to cure COVID, the medical file is ‘not kept secret as we think’

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Column: In the middle of a race to cure COVID, the medical file is 'not kept secret as we think'

To hear President Trump say, the COVID-19 vaccine will arrive soon.

“We think we will have a vaccine by the end of this year and we are trying very hard,” he said to Fox News last week.

While many health experts say that ambitious goals are unrealistic – most say vaccines for widespread use are unlikely until the earliest next year – Trump’s comments raise some interesting questions.

How will researchers recruit subjects for the COVID-19 vaccine or healing test? Will scientists wait for infected or interested people to contact them? Will they use other ways to find suitable research participants?

If the latter, it seems fair to wonder how confidential our medical records are. There is no faster way to recruit research subjects than by reading people’s health service files and seeing who qualifies.

Joel Engel, a resident of Westlake Village, suspected this happened to him a few days after he received two phone calls asking if he wanted to enroll in UCLA’s sleep study.

Engel, a writer, said he was treated at a UCLA facility about five years ago.

“Callers say they need people of a certain age in good health,” he told me. “I asked how they knew my age and condition. I can’t get a straight answer. “

Engel’s concern is that UCLA violates federal medical privacy law Health Insurance Portability and Accountability Act, which prohibits unauthorized access to people’s medical information.

“How else do they know to call me?” he wondered.

That’s a fair question.

And with the global pandemic raging, maybe all Americans should wonder if their medical records are as confidential as they thought.

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Are we all a fair game for research given the extraordinary circumstances?

Short answer: No. And yes.

“You can’t just fish around people’s medical records,” said Arthur Caplan, a professor of bioethics at New York University. “HIPAA forbids it.”

In addition, there are no provisions in the law that say a pandemic or other public health emergency creates exceptions that allow researchers to protect privacy protection.

“The public health crisis should not affect recruitment for sleep studies,” said Mildred Cho, associate director of the Center for Biomedical Ethics at Stanford University.

However, he and other medical privacy experts note that legal loopholes do exist.

Perhaps the most important exception to HIPAA in the age of coronavirus is what is known as the “preparation for research” provision.

This allows researchers to examine people’s medical records to ascertain whether there are enough potential candidates for the study.

This provision does not give the researcher the right to contact possible study participants. That will require advance permission from the patient.

“Usually the only people who are allowed to make direct patient contact for research are patient health care providers,” Cho said, which means that only your doctor can reach out in this regard.

But, once again, there are exceptions.

Nancy M.P. King, co-director of the Center for Bioethics, Health and Society at Wake Forest University, said the hospital’s institutional review board, which oversees ethical issues, can independently limit patient privacy rights if at all possible.

Such councils “have a set of protocols that investigators must follow, which can produce summons like your readers mentioned,” he told me.

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This clearly has implications for high-speed race and high stakes for the COVID-19 vaccine.

If researchers believe certain types of patients show the most promising promise for testing, such work can be greatly accelerated if scientists know who to contact.

Which brings us back to the question: How did they find you?

Engel said he was told about the sleep study he wanted being carried out by the Norman Cousins ​​Center for Psychoneuroimmunology at UCLA, which he had never dealt with.

He asked the woman who called his house. He contacted the director of the Norman Cousins ​​Center. No one can or will say how they got access to Engel’s information.

Phil Hampton, a UCLA Health spokesman, told me by email that the campus medical center conducted “clinical trials and other research involving patients.”

“Consistent with the laws governing patient privacy, when looking for patients to participate in research studies, our practice is to contact only patients from whom we have written consent,” he said.

I conveyed this to Engel, who replied that he “did not remember giving them written permission to use my medical records for anything other than medical care.”

Apparently there is a reason for that.

Acting on an allegation, I asked Hampton if there was a good print in the form of routine privacy that people signed when they were treated at a UCLA medical facility that allowed the use of their information for research purposes.

He replied: “I can confirm that the patient’s signature on the privacy practice form authorizes UCLA outreach for the purpose of asking about the patient’s interest in participating in an approved research study.”

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Bingo.

The practice seems to be widespread. Spokesmen for the Cedars-Sinai Medical Center and USC told me that their patients agreed with the same language when they checked in. They say this is the “standard” in many hospitals.

If so, this is another reminder of the importance of reading printed documents. You never know what’s lurking there.

Although we would like to consider our medical records locked up, this is far from the case.

“Our records are not kept as secret as we thought,” said Matthew Weinberg, a professor of medical ethics at the Philadelphia College of Osteopathic Medicine. “Many individuals and organizations have official access to our personal medical information.”

If this makes you unable to sleep well at night, don’t worry. UCLA is researching that.

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Portuguese historical films will premiere on 29 December.

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Portuguese historical films will premiere on 29 December.

Method Media Bermuda will present the documentary FABRIC: Portuguese History in Bermuda on Thursday, December 29 at the Underwater Research Institute of Bermuda.

A spokesperson said: “Method Media is proud to bring Bermuda Fabric: Portugal History to Bermuda for its 5th and 6th showing at the Bermuda Underwater Observatory. In November and December 2019, Cloth: A Portuguese Story in Bermuda had four sold-out screenings. Now that Bermuda has reopened after the pandemic, it’s time to bring the film back for at least two screenings.

“There are tickets Ptix.bm For $ 20 – sessions at 15:30 and 18:00. Both screenings will be followed by a short Q&A session.

Director and producer Milton Raboso says, “FABRIC is a definitive account of the Portuguese community in Bermuda and its 151 years of history, but it also places Bermuda, Acors and Portugal in the world history and the events that have fueled those 151 years.

“It took more than 10 years to implement FABRIC. The film was supported by the Minister of Culture, the Government of the Azores and private donors.

Bermuda Media Method [MMB] Created in 2011 by producer Milton Raposo. MMB has created content for a wide range of clients: Bermuda’s new hospital renovation, reinsurance, travel campaigns, international sports and more. MMB pays special attention to artistic, cultural and historical content.

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CRISTANO RONALDO CAN MAKE UP A GIANT IN CARIOCA AND PORTUGUESE TECHNICIAN SAYS ‘There will be room’

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CRISTANO RONALDO CAN MAKE UP A GIANT IN CARIOCA AND PORTUGUESE TECHNICIAN SAYS 'There will be room'

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Maestro de Braga is the first Portuguese in the National Symphony Orchestra of Cuba.

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Maestro de Braga is the first Portuguese in the National Symphony Orchestra of Cuba.

Maestro Filipe Cunha, Artistic Director of the Philharmonic Orchestra of Braga, has been invited to conduct the Cuban National Symphony Orchestra, as announced today.

According to a statement sent by O MINHO, “he will be the first Portuguese conductor to conduct this orchestra in its entire history.”

In addition to this orchestra, the maestro will also work with the Lyceo Mozarteum de la Habana Symphony Orchestra.

The concerts will take place on 4 and 12 March 2023 at the National Theater of Cuba in Havana.

In the words of the maestro, quoted in the statement, “these will be very beautiful concerts with difficult but very complex pieces” and therefore he feels “very motivated”.

From the very beginning, Rachmaninoff’s Piano Concerto No. 2 will be performed by an Italian pianist (Luigi Borzillo), whom the maestro wants to bring to Portugal later this year. In the same concert, Mendelshon’s First Symphony will be performed.

Then, at the second concert, in the company of the Mexican clarinetist Angel Zedillo, he will perform the Louis Sfora Concerto No. 2. In this concert, the maestro also conducts Tchaikovsky’s Fifth Symphony.

“This is an international recognition of my work. An invitation that I accept with humility and great responsibility. I was surprised to learn that I would be the first Portuguese member of the Cuban National Symphony Orchestra. This is a very great honor,” the maestro said in a statement.

“I take with me the name of the city of Braga and Portugal with all the responsibility that goes with it, and I hope to do a good job there, leaving a good image and putting on great concerts. These will be very special concerts because, in addition to performing pieces that I love, especially Rachmaninov and Tchaikovsky, I will be directing two wonderful soloists who are also my friends. It will be very beautiful,” concludes Filipe Cunha.

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