What does autonomy mean?

Written in response to the following article:


When it comes to clinical-decision software, what does autonomy mean?

 

The current rage for building , selling, and using “bedside analytics” and Big Data technologies is all about financial gain for investors and corporations, it is not about the best interests of the public.
 
Whatever advances the Kaiser technology offers are all proprietary and hidden. Nothing is tested/vetted scientifically by other academic experts. I’ve written before about Mayo’s Bedside Analytics—it’s the exact same thing—all secret.
 
The privatization of the science of Medicine and the privatization of research in Medicine is an incredibly bad development for the people of the US. This is not the case in Europe or other Western nations. Only in the US does money trump science and the greater good.
 
In the past, US Medicine advanced via science: research data and results/conclusions were always openly shared, vetted, and tested by other researchers. Advances in knowledge were always shared for the greater good.
 
The practices of Medicine and Nursing in the US used to be “professions” with ethics that required physicians and nurses to put patients’ needs and interests first, ahead of their own personal interest. The underlying idea was that advances in Medicine belong in the public domain. Suppose Salk and Sabin had privatized their research and the resulting injected and oral polio vaccinations?  If profit had always been the motive of Medicine and Nursing, would these professions have ever gained the public’s trust?
 
Now the National Nurses United opposes the use of these technologies. BRAVO!!!!
 
Where is the comparable response from any medical professional organization? So far, there is none.
 
deb

 

Google’s Larry Page wants to ‘save 100,000 lives’ by analyzing your healthcare data

By Eerke Boiten, University of Kent | June 28, 2014

Talking up the power of big data is a real trend at the moment and Google founder Larry Page took it to new levels this week by proclaiming that 100,000 lives could be saved next year alone if we did more to open up healthcare information.

Google, likely the biggest data owner outside the NSA, is evidently carving a place for itself in the big data vs life and death debate but Page might have been a little more modest, given that Google’s massive Flu Trends programme ultimately proved unreliable. Big data isn’t some magic weapon that can solve all our problems and whether Page wants to admit it or not, it won’t save thousands of lives in the near future.

Big promises

Saving lives by analysing healthcare data has become a major human ambition, but to say this is a tricky task would be an enormous understatement.

In the UK, the government has just produced a consultation on introducing regulations for protecting this kind of information alongside care.data, a huge scheme aiming to make health records available to researchers and others who could work with it.

Given the ongoing care.data debacle, this is a broadly sensible document and a promising start for consultation. In particular, it identifies different levels of data. Data that could be used to identify an individual person should not be shared in the same way as other types of data.

But, like Page, the UK government is also presenting a false vision for big data. It has said review after review have found that a failure to share information between healthcare workers has led to child deaths. It’s an emotive admission but rather beside the point in the big data perspective.

It is indeed entirely credible that many tragic failures within the NHS might have been prevented by someone sharing the right information with the right person. Sharing is essential, but when the NHS talks about sharing, it means linking and sharing large medical databases between organisations. Surely no case review has ever claimed that the mere existence of a larger database of information would have got the right knowledge to the right person.

Medical data sharing may be a good thing in many ways, but unfortunately there is no clear case yet that it prevents child deaths and other tragedies. It is only big data, not magic. Preventing child deaths appears to be brought in as emotional blackmail, expected to trump the valid concerns over the NHS’ big data plans.

To view the full article, please visit Google’s Larry Page wants to ‘save 100,000 lives’ by analyzing your healthcare data

Your Doctor Knows You’re Killing Yourself. The Data Brokers Told Her.

Shannon Pettypiece and Jordan Robertson | Bloomberg News | Jun 26, 2014 11:35 AM CT

You may soon get a call from your doctor if you’ve let your gym membership lapse, made a habit of picking up candy bars at the check-out counter or begin shopping at plus-sized stores.

That’s because some hospitals are starting to use detailed consumer data to create profiles on current and potential patients to identify those most likely to get sick, so the hospitals can intervene before they do.

Information compiled by data brokers from public records and credit card transactions can reveal where a person shops, the food they buy, and whether they smoke. The largest hospital chain in the Carolinas is plugging data for 2 million people into algorithms designed to identify high-risk patients, while Pennsylvania’s biggest system uses household and demographic data. Patients and their advocates, meanwhile, say they’re concerned that big data’s expansion into medical care will hurt the doctor-patient relationship and threaten privacy.

Related:

“It is one thing to have a number I can call if I have a problem or question, it is another thing to get unsolicited phone calls. I don’t like that,” said Jorjanne Murry, an accountant in Charlotte, North Carolina, who has Type 1 diabetes. “I think it is intrusive.”

Acxiom Corp. (ACXM) and LexisNexis are two of the largest data brokers who collect such information on individuals. Acxiom says their data is supposed to be used only for marketing, not for medical purposes or to be included in medical records. LexisNexis said it doesn’t sell consumer information to health insurers for the purposes of identifying patients at risk.

To view the full article, please visit Your Doctor Knows You’re Killing Yourself. The Data Brokers Told Her.

Privacy could ‘crash’ big data if not done right

April 15, 2014 | By Ashley Gold | FierceHealthIT

Privacy has the potential to crash big data before there’s a chance to get it right, and finding the right balance is key to future success, experts argued at a Princeton University event earlier this month.

The event, titled “Big Data and Health: Implications for New Jersey’s Health Care System” featured four panels exploring health, privacy, cost and transparency in regard to how big data can improve care and patient outcomes, according to an article on the university’s website.

“Privacy will crash big data if we don’t get it right,” Joel Reidenberg, visiting professor of computer science at Princeton and a professor at Fordham University’s School of Law, said at the event.

To view the full article, please visit Privacy could ‘crash’ big data if not done right

 

Petition for OSTP to Conduct Public Comment Process on Big Data and the Future of Privacy

February 10, 2013

Patient Privacy Rights, joined by EPIC, ACLU, Center for Democracy & Technology, EFF and 24 other consumer privacy and public interest organizations asked the White House’s Office of Science and Technology Policy to issue a Request for Information in order to conduct a review that incorporates the concerns and opinions of those whose data may be collected in bulk as a result of their engagement with technology.

“We believe that the public policy considerations arising from big data and privacy are issues of national concerns that ‘require the attention at the highest levels of Government.’”

The Coalition for Patient Privacy believes that the “OSTP should consider a broad range of big data privacy issues, including but not limited to:
(1) What potential harms arise from big data collection and how are these risks currently addressed?
(2) What are the legal frameworks currently governing big data, and are they adequate?
(3) How could companies and government agencies be more transparent in the use of big data, for example, by publishing algorithms?
(4) What technical measures could promote the benefits of big data while minimizing the privacy risks?
(5) What experience have other countries had trying to address the challenges of big data?
(6) What future trends concerning big data could inform the current debate?”

For more information, see EPIC, Coalition Urge White House to Listen to Public on “Big Data and Privacy”

To view a copy of the letter, please visit Petition for OSTP to Conduct Public Comment Process on Big Data and the Future of Privacy

The Biggest Data Myths of 2013

The biggest myth about “Big Data” users of the entire nation’s health information is that personal health data was acquired legally and ethically.

Just ask anyone you know if they ever agreed to the hidden use and sale of sensitive personal information about their minds and bodies by corporations or “research” businesses for analytics, sales, research or any other use. The answer is “no.”

Americans have very strong individual rights to health information privacy, i.e., to control the use of their most sensitive personal information. If US citizens have any “right to privacy,” that right has always applied to sensitive personal health information. This was very clear for our paper medical records and is embodied in the Hippocratic Oath as the requirement to obtain informed consent before disclosing patient information (with rare exceptions).

The IPO filing by IMS Health Holdings at the SEC exposed the vast number of hidden health data sellers and buyers. Buying, aggregating, and selling the nation’s health data is an “unfair and deceptive” trade practice. (Read more of Dr. Peel’s comments on the IMS filing here.)

Does the public know or expect that IMS (and the 100’s of thousands of other hidden health data mining companies) buys and aggregates sensitive “prescription and promotional” records, “electronic medical records,” “claims data,” and “social media” to create “comprehensive,” “longitudinal” health records on “400 million” patients? Or that IMS buys “proprietary data sourced from over 100,000 data suppliers covering over 780,000 data feeds globally”? Again, the answer is “no.”

Given the massive hidden theft, sale, and misuse of the nation’s health information how can any physician, hospital, or health data holder represent that our personal health data is private, secure, or confidential?

deb

Company That Knows What Drugs Everyone Takes Going Public

Nearly every time you fill out a prescription, your pharmacy sells details of the transaction to outside companies which compile and analyze the information to resell to others. The data includes age and gender of the patient, the name, address and contact details of their doctor, and details about the prescription.

A 60-year-old company little known by the public, IMS Health, is leading the way in gathering this data. They say they have assembled “85% of the world’s prescriptions by sales revenue and approximately 400 million comprehensive, longitudinal, anonymous patient records.”

IMS Health sells data and reports to all the top 100 worldwide global pharmaceutical and biotechnology companies, as well as consulting firms, advertising agencies, government bodies and financial firms. In a January 2nd filing to the Security and Exchange Commission announcing an upcoming IPO, IMS said it processes data from more 45 billion healthcare transactions annually (more than six for each human on earth on average) and collects information from more than 780,000 different streams of data worldwide.

Deborah Peel, a Freudian psychoanalyst who founded Patient Privacy Rights in Austin, Texas, has long been concerned about corporate gathering of medical records.

“I’ve spent 35 years or more listening to how people have been harmed because their records went somewhere they didn’t expect,” she says. “It got to employers who either fired them or demoted them or used the information to destroy their reputation.”

“It’s just not right. I saw massive discrimination in the paper age. Exponential isn’t even a big enough word for how far and how much the data is going to be used in the information age,” she continued. “If personal health data ‘belongs’ to anyone, surely it belongs to the individual, not to any corporation that handles, stores, or transmits that information.”

To view the full article please visit: Company That Knows What Drugs Everyone Takes Going Public

Data Mining to Recruit Sick People

Companies Use Information From Data Brokers, Pharmacies, Social Networks

Some health-care companies are pulling back the curtain on medical privacy without ever accessing personal medical records, by probing readily available information from data brokers, pharmacies and social networks that offer indirect clues to an individual’s health.

Companies specializing in patient recruitment for clinical trials use hundreds of data points—from age and race to shopping habits—to identify the sick and target them with telemarketing calls and direct-mail pitches to participate in research.

“I think patients would be shocked to find out how little privacy protection they have outside of traditional health care,” says Nicolas P. Terry, professor and co-director at the Center for Law and Health at Indiana University’s law school. He adds, “Big Data essentially can operate in a HIPAA-free zone.”

FTC Commissioner Julie Brill says she is worried that the use of nonprotected consumer data can be used to deny employment or inadvertently reveal illnesses that people want kept secret. “As Big Data algorithms become more accurate and powerful, consumers need to know a lot more about the ways in which their data is used,” Ms. Brill says.

To view the full article, please visit: Data Mining to Recruit Sick People (article published December 17, 2013)

 

 

Can Big Data Make Healthcare Better, Cheaper?

December 12, 2013
Medical records are being digitized on a massive scale to bring down the costs of healthcare and, maybe, to produce better outcomes. It also means a loss of patient privacy. President Obama’s Affordable Care Act promotes the digitization of millions of medical records to measure outcomes and contain costs. Big Data may also help doctors better understand many diseases, who’s most likely to get them and what the best treatments might be. It also makes the most intimate kind of personal information available to the government, insurance and drug companies — even prospective employers. Should patients be able to say “yes” or “no?”

 

Host, Warren Olney of NPR affiliate KCRW, interviews Dr. Deborah Peel, to discuss the risks and the benefits of Big Data in the field of medicine. She is joined by fellow panelists Joel Dudley, Department of Genetics and Genomic Sciences, Mt. Sinai Medical School, Iya Khalil, Executive VP and Co-Founder, GNS Healthcare, and Nortin Hadler, Professor of Medicine and Microbiology/Immunology, University of North Carolina at Chapel Hill.
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