Infanticide As A Right: Killing Babies No Different From Abortion, "Experts" Say?

Holy Hippocrates...

This is nihilism at its finest. This is what happens when "education" turns into madness. Infanticide of newborns becomes a right:

The Telegraph
Feb. 29, 2012
http://www.telegraph.co.uk/health/healthnews/9113394/Killing-babies-no-different-from-abortion-experts-say.html

Parents should be allowed to have their newborn babies killed because they are “morally irrelevant” and ending their lives is no different to abortion, a group of medical ethicists linked to Oxford University has argued.

The article, published in the Journal of Medical Ethics, says newborn babies are not “actual persons” and do not have a “moral right to life”. The academics also argue that parents should be able to have their baby killed if it turns out to be disabled when it is born.

The journal’s editor, Prof Julian Savulescu, director of the Oxford Uehiro Centre for Practical Ethics, said the article's authors had received death threats since publishing the article. He said those who made abusive and threatening posts about the study were “fanatics opposed to the very values of a liberal society”.

The article, entitled “After-birth abortion: Why should the baby live?”, was written by two of Prof Savulescu’s former associates, Alberto Giubilini and Francesca Minerva.

They argued: “The moral status of an infant is equivalent to that of a fetus in the sense that both lack those properties that justify the attribution of a right to life to an individual.”

Rather than being “actual persons”, newborns were “potential persons”. They explained: “Both a fetus and a newborn certainly are human beings and potential persons, but neither is a ‘person’ in the sense of ‘subject of a moral right to life’.

My observations:

1. These medical ethicists should keep their "ethics" within their own families.

2. One wonders if the current non-consensual human subjects experimentation known as "health IT" is justified by the same "ethicists."

-- SS

Addendum March 1, 2012:

We've been here before.

From another blog: Tacitus, a.k.a Publius (or Gaius) Cornelius Tacitus (AD 56 – AD 117) was a senator and a historian of the Roman Empire. Tacitus criticized the "rebels" of the time for, among other things, their refusal to kill newly born babies: http://en.wikisource.org/wiki/The_Histories_%28Tacitus%29/Book_5 . See section 5.

Such a practice was apparently no big deal then.

This "ethics" proposed at Oxford represents a return to uncivilizedness.

-- SS

Semi-Retirement of a Salesman - Weldon to Retire as Johnson and Johnson CEO

The extremely well compensated CEO and Chairman of Johnson and Johnson, the huge and recently hugely troubled US based pharmaceutical and device company, is going to retire, at least as CEO.  Reporting on this event may shed a little more light on the sorts of leadership problems that now commonly afflict health care organizations.

The Credo

Johnson and Johnson was once one of the US' most respected companies.  Its credo, written in 1943 by Robert Wood Johnson, bravely begins:

We believe our first responsibility is to doctors, nurses and patients, to mothers and fathers, and all others who use our products and services. In meeting their needs, everything we do must be of high quality.

Dishonoring the Credo

Yet in the last few years the company has not honored this credo.

It seems to have lost the ability to manufacture high quality products. It has had to make 30 separate product recalls since 2009. The latest was Liquid Infant Tylenol. (The current WSJ Health Blog list of recalls can be found here.)

Johnson and Johnson also has an amazing recent record of ethical lapses and guilty pleas, including:
- Convictions in two different states in 2010 for misleading marketing of Risperdal
- A guilty plea for misbranding Topamax in 2010
- Guilty pleas to bribery in Europe in 2011 by J+J's DePuy subsidiary
- A guilty plea for marketing Risperdal for unapproved uses in 2011 (see this link for all of the above)
- Accusations that the company, which makes smoking cessation products, participated along with tobacco companies in efforts to lobby state legislators (see post here)
- A guilty plea to misbranding Natrecor by J+J subsidiary Scios (see post here)
-  Most recently, in 2012, testimony in a trial of allegations of unethical marketing of the drug Respirdal (risperidone) by the Janssen subsidiary revealed a systemic, deceptive stealth marketing campaign that fostered suppression of research whose results were unfavorable to the company, ghostwriting, the use of key opinion leaders as marketers in the guise of academics and professionals, and intimidation of whistleblowers.  After these revelations, the company abruptly settled the case (see post here).

Disconnect Between Leadership Performance and Rewards

Nonetheless, until very recently, the top leadership of the company continued to collect outrageous compensation, and to be regarded as a font of health care wisdom, even by the current US administration.

In 2010, the company gave CEO and Chairman William Weldon over $29 million in compensation, saying he "met expectations," (see this post).

In 2011, just days after the company pleaded guilty in the Risperdal marketing case (above), CEO and Chairman Weldon was invited to the White House to discuss health care (see this post.)

Just after his resignation was announced a few days ago, the Wall Street Journal reported that Weldon would get an increased bonus for 2011 ($3.1 million, up from $1.98 million in 2010), and an increased base salary ($1.97 million up from $1.92 million.)  His total compensation for 2011 was not yet revealed. 

Swapping One Salesman for Another

A single New York Times article suggested one reason why Weldon's reign was ultimately so unsuccessful, and perhaps why his successor may not do better.

Alex Gorsky, the newly named chief executive of Johnson & Johnson, shares a crucial biographical detail with William C. Weldon, the man he is succeeding. Both got their starts as pharmaceutical sales representatives, a notoriously grueling job that — because it demands stamina, charisma and a near devotion to making the sale — has become a crucible for future drug company executives in recent years.

Indeed, Mr Weldon's official biography indicates he "served in several sales, marketing and international management positions." The official biography of CEO-to-be, Alex Gorsky, stated he "began his Johnson & Johnson career as a sales representative with Janssen Pharmaceutica in 1988. Over the next 15 years, he advanced through positions of increasing responsibility in sales, marketing, and management." Previously, he earned "a Bachelor of Science degree from the U.S. Military Academy at West Point, N.Y., and spent six years in the U.S. Army, finishing his military career with the rank of Captain. Alex earned a Master of Business Administration degree from The Wharton School of the University of Pennsylvania in 1996."

Apparently neither current nor nominated CEO had any direct experience in patient care, nor in biomedical or clinical science, nor in chemistry, engineering or manufacturing. So both are generic managers, that is, health care leaders without any direct experience in health care, or in the science and technology underlying it.

"Making the Numbers" Versus the Credo

Moreover, they are both a particular type of generic manager, salespeople. As the Times reported:

Mr. Gorsky, who is 51, fits the mold of someone who once 'carried the bag' — industry slang for working as a sales representative. He is known as a polished speaker and an intense yet likable manager who is a quick study when it comes to learning new topics.

However, while sales people may be personable, they often have goals that have nothing to do with responsibilities "to doctors, nurses and patients, to mothers and fathers,...." As the Times article also noted,

But the ethos of the sales representative may not be what Johnson & Johnson needs right now, said Erik Gordon, who teaches business at the University of Michigan. 'That culture was very much the Weldon culture writ large — we will make our numbers for the analysts, period,' he said. 'And if that means we have to cut costs on things that affect quality, then by God, we’re going to make those numbers.'

So while Johnson and Johnson for years prided itself as a company that put the needs of patients and health professionals first, it hired leaders from the culture of sales where the impetus is to "make the numbers," to fulfill short term revenue goals, no matter what. This illustrates how generic management given perverse incentives in an era that honors greed and puts short-term economic goals ahead of all others had hollowed out health care.

We wish Mr Gorsky well, but worry that if he too focuses just on making the numbers, the result will be only mischief.

The Moral of the Story

Health care organizations need leaders that uphold the core values of health care, and focus on and are accountable for the mission, not on secondary responsibilities that conflict with these values and their mission, and not on self-enrichment. Leaders ought to be rewarded reasonably, but not lavishly, for doing what ultimately improves patient care, or when applicable, good education and good research. On the other hand, those who authorize, direct and implement bad behavior ought to suffer negative consequences sufficient to deter future bad behavior.


If we do not fix the severe problems affecting the leadership and governance of health care, and do not increase accountability, integrity and transparency of health care leadership and governance, we will be as much to blame as the leaders when the system collapses.

BLOGSCAN - Keeping the Echoes Alive

We frequently discuss the anechoic effect, how many of the cases and issues of interest to Health Care Renewal, which conversely may be troubling to the powers that be in health care, often fail to inspire as much discussion, or the echoes that they deserve, either in the "main-stream media," or in the medical and health care literature.  A new post on the 1BoringOldMan blog likened the anechoic effect to the "flooding" phenomenon seen in psychotherapy, basically how patients seek to change the subject when a particularly troubling issue comes up.  Furthermore, the semi-anonymous blogger, "Mickey," is hopping on our tiny bandwagon for those dedicated to keep these troubling topics from completely fading from public view. 

True or Not? Death By Deletion, Adventist Health System IT Whistleblower Patricia Moleski Speaks Out

Not sure what to make of this yet:

Whistleblower Patricia Moleski speaks out about health IT abuses - play at http://workmancompensationlawyers.net/12/23/death-by-deletion-adventist-health-system-it-whistleblower-patricia-moleski-speaks-out/

A former hospital IT worker claims very deliberate mass spoliation (e.g., deletion) of electronic medical record evidence to limit her (ex)-employer's liability for EHR-related medical malpractice on patients and injured workers who were entitled to workers compensation, as well as EHR defects.

She alleges that IT personnel are used as naïve accomplices to perform the spoliation acts. She grew suspicious when she was asked to delete nursing information about a patient who committed suicide by jumping out a hospital window after an EHR-related drug overdose.

The video is over an hour long and is worth listening to.

She made these claims to the FBI and alleged to have suffered retaliation including firing, and possible terroristic activities directed against her.

A Feb. 2010 letter to Gov. Crist, Sen. Grassley and many other government officials, a 9th Judicial Circuit court document for Orange County, FL (PDF), and other details - some scary - can be found via a google search on this person's name: https://www.google.com/search?q=Patricia%20Moleski .

A Feb. 2010 letter to Sen. Grassley, former Fla. Governor Crist, various other senators, news media, etc. alleging serious, systematic, purposeful HIT evidence tampering and erasure. Click to bring up full letter.

This could be the "Libby Zion" (or Bernard Madoff?) case of the health IT world if these allegations are true.

-- SS

Health IT Culture: Severe Overconfidence (Arrogance?) Shows In The Industry's Very Terminology For Their Deliverables

Health IT commentator Neil Versel notes in his piece "HIMSS12 notes" at his site Meaningful Health IT News that:

I am in 100 percent agreement with something Dr. Wendy Sue Swanson, a.k.a. Seattle Mama Doc, said during an engaging presentation Monday at the HIMSS/CHIME CIO Forum. She made the astute observation that there needs to be better distinction between expertise and merely experience when it comes to celebrities being held up as “experts” in healthcare and medicine. Let’s just say that Swanson, as a pediatrician, is no fan of some of the things Jenny McCarthy and Dr. Mehmet Oz have told wide audiences.

He posted a link to his piece in a social networking site we both visit. I commented:

To that, I add "healthcare IT" where it seems anyone who's done anything with a computer in some medical setting can get away with calling themselves a "medical informatics expert" or "health IT expert." As in ham radio levels of just a few years ago, we need distinctions between novice class, technician class, general class, advanced class, and extra class.

In his piece Neil also linked to what he correctly termed "scathing critique" of the venue for HIMSS 2012 at my HC Renewal post "HIMSS Annual Meeting in Las Vegas - Fitting for People Who Gamble With People's Lives to Make a Buck?"

I replied to him via the social networking site that:

"I like to point out ironies that seem to escape others, although I have heard from other colleagues that I was not alone in finding Las Vegas a somewhat peculiar place for a medical meeting about improving health! However, others' mileage may vary."

Neil noted that he likes pointing out ironies, too, and gave as an example as the meetings held at the Loews Hotel near Vanderbilt University Medical Center, being that Loews Hotels is a corporate cousin of Lorrilard Tobacco.

Finally, Neil comments:

Popular topics this year were the expected meaningful use and ICD-10, plus the buzzwords of the moment, business analytics and big data. I’d be happy I never hear the word “solution” as a synonym for “product” or “service” again. To me, that represents lazy marketing. Get yourself a thesaurus.

I agreed, and replied that:

"Solution", the common term in IT for anything an IT department or company provides, is a one-word example of a language usage akin to 'begging the question.'

This term, in one mere word, reflects a stunning arrogance within the IT culture.

I also noted that:

... there needs to be terminological consistency. If the IT vendors can call their wares "solutions", then doctors should call their treatments and drugs "cures." Come to my office for your cure; I am a curer; I write cures, not prescriptions.

I also noted that the term "meaningful use" phrase selected by the U.S. government/HHS for EHR adoption according to printed guidelines is another example of terminology that, ante hoc, assumes its semantics are correct.

How do we know the use is "meaningful" until such use is studied rigorously and outcomes, costs. etc. assessed?

Answer: we don't.

And this administration criticized the previous one for politicizing science ... George Orwell could not have selected better terms than "meaningful use", "certified EHR", and "solution" as examples of "Newspeak" in 1984.

-- SS

Working with WOAR to Educate Teens on Safety in Sexual Health

WHEP ELECTIVE: Women’s Health in the Community

For my Women’s Health in the Community elective, I reached out to the organization Women Organized Against Rape (WOAR). WOAR provides counseling services, advocacy for victims of sexual violence, and educational programs to stop sexual and domestic violence and bullying. As a future gynecologist, I am aware of the dangers of intimate partner violence and sexual assault, and I wanted to better educate myself on the topic.

Once I got in touch with Teresa White-Walston, Director of Educational Services, we discussed WOAR’s educational programs and how I could contribute. Teresa works closely with local schools, teaching teens about bullying, self-esteem and character building. She saw the need for sexual health education for her students, as many of them become involved in sexual activity before they are ready and, often, are misinformed by their peers on the topic.

I developed a lecture geared toward middle school girls where I covered basic female reproductive anatomy, facts about teen sexual activity, sexually transmitted illnesses (STI) risks and the realities of teen pregnancy. Researching, alone, for this presentation was an eye-opening experience! Here are some interesting facts that stood out to me (AND my students):


-43% of teenage girls and 42% of teenage boy have had sexual intercourse, but only 33% are currently sexually active (CDC Youth Risk Behavior Survey)


-15-24 year olds account for only 25% of the sexually active population in US, but are nearly 50% of all new STI’s diagnosed annually (CDC)


-In 2009, more than 400,000 girls aged 15-19 years old gave birth (CDC)


-50% of teen moms have a high school diploma by age 22, compared to 90% of teenage girls who don’t give birth (CDC)


As I gave my lecture to classrooms of curious 6th, 7th, and 8th graders, I could see that many of the things I taught were completely new to them. First of all, most of the girls had no idea what body parts they had or what their proper names are. Secondly, my students were surprised to see that only 33% of teens are sexually active. Based on the media and schoolyard gossip, they thought the number was closer to 80 or 90-percent! I’m glad I could show them otherwise. The information I gave the students about STI’s seemed to hit the kids from left field. Sure, they’ve heard of HIV and how bad it is. But they didn’t know about all of the other STI’s or how many people have them. I shocked many when I informed them that some sexually-transmitted infections are life-long and could have serious consequences like cancer and infertility. As for the pregnancy part of the lecture, it seemed like each of the students knew someone who got pregnant and gave birth before she was ready. I ended each lecture with a discussion on the magnitude of engaging in sexual activity, the importance of waiting until one is ready, and what a responsible teenager should do when she is.

I hope the information I gave these girls empowered them to stand up against peer pressure and wait until they are truly ready and fully educated to be sexually active, as there are many consequences to consider and protect against. I hope I prepared them with a good foundation on reproductive health and safety. In the end, it is each girl’s responsibility to protect herself, and I hope these girls rise to the challenge to take care of her health and future.


Teresa was terrific. In addition to teaching, she took the time to give me some training for crisis counseling. We discussed the issues surrounding sexual and domestic violence and how to empower victims. She even took me to the Philadelphia Sexual Assault Response Center, so that I could see where a rape victim is treated and what she must go through.


Unfortunately, my time with WOAR has come to an end. However, Teresa and the schools I visited would love to have more Drexel students come through and do similar work to what I had been doing. As medical students, we offer more medical information than Teresa and her volunteers can give to their students, and there is a great need for strong role models at these schools. Please consider working with WOAR either through a Women’s Health elective or as a volunteer. You will be able to reach out to many young girls who need your expertise, and you will probably learn a few things along the way as well. If you are interested, email WHEP at mnickens@drexelmed.edu. To learn more about WOAR, check out their website: www.woar.org.

Submitted by Jennifer Lee, Class of 2012

Three Facets of One Hospital: Coddling the Rich, Hounding the Poor, and Crooked Executives

Juxtaposing three news stories from the past few months raises disturbing questions about the priorities of the leaders of one of the US' more prestigious hospitals.

"Chefs, Butlers, Marble Baths: Hospitals Vie for the Affluent"

 This 21 January, 2012 article from the New York Times focused on the ritzy comforts now provided for wealthy (but perhaps not very sick) patients at the renowned New York Presbyterian/ Weill Cornell Hospital.  It opened,

The feverish patient had spent hours in a crowded emergency room. When she opened her eyes in her Manhattan hospital room last winter, she recalled later, she wondered if she could be hallucinating: 'This is like the Four Seasons — where am I?'

The bed linens were by Frette, Italian purveyors of high-thread-count sheets to popes and princes. The bathroom gleamed with polished marble. Huge windows displayed panoramic East River views. And in the hush of her $2,400 suite, a man in a black vest and tie proffered an elaborate menu and told her, 'I’ll be your butler.'

It was Greenberg 14 South, the elite wing on the new penthouse floor of NewYork-Presbyterian/Weill Cornell hospital. Pampering and décor to rival a grand hotel, if not a Downton Abbey, have long been the hallmark of such 'amenities units,' often hidden behind closed doors at New York’s premier hospitals. But the phenomenon is escalating here and around the country, health care design specialists say, part of an international competition for wealthy patients willing to pay extra, even as the federal government cuts back hospital reimbursement in pursuit of a more universal and affordable American medical system.

Additional amenities include:

A waterfall, a grand piano and the image of a giant orchid grace the soaring ninth floor atrium....

Also,

the visitors’ lounge seems to hang over the East River in a glass prow and Ciao Bella gelato is available on demand....

An architect who specializes in designing such luxury facilities for hospitals noted:

'These kinds of patients, they’re paying cash — they’re the best kind of patient to have,' she added. 'Theoretically, it trickles down.'

Note that the article also mentioned other hospitals which offered similar luxuries, including Johns Hopkins Hospital in Baltimore, Cedars-Sinai Medical Center in Los Angeles, and Mount Sinai Medical Center in New York.

On the other hand,....

Hounding the Poor for Payment While Getting Government Money for Indigent Care

On 12 February, the New York Times published an article about how New York Presbyterian/ Weill Cornell deals with patients with fewer resources than those discussed above:

For most of her life, Hope Rubel was a healthy woman with good medical insurance, an unblemished credit history and a solid career in graphic design. But on the day an ambulance rushed her to a Manhattan hospital emergency room shortly after her 48th birthday, she was jobless, uninsured and having a stroke.

Ms. Rubel’s medical problem was rare, a result of a benign tumor on her adrenal gland, but the financial consequences were not unusual. She depleted her savings to pay $17,000 for surgery to remove the tumor, and then watched, 'emotionally paralyzed,' she said, as $88,000 in additional hospital bills poured in. Eventually the hospital sued her for the money.

Yet that year the hospital, NewYork-Presbyterian/Weill Cornell, had already collected $50.2 million from the state’s so-called Indigent Care Pool to help care for people like Ms. Rubel who have no insurance and cannot pay their bills.

Note that the article also included other New York hospitals that allegedly used aggressive collection tactics on poor patients even though they too collected government money for indigent care. These included NYU Langone Medical Center and State University of New York Downstate Medical Center.

And one more...

Kickbacks for Hospital Executives

For some reason, the only media coverage of this story was not in New York, but by the Philadelphia Inquirer on 13 February, 2012.

The FBI said that ... [Michael Yaron] he received asbestos-removal and construction contracts at New York Presbyterian Hospital for two of his companies, Cambridge Environmental & Construction Corp. and Oxford Construction & Development Corp., because he paid about $2.3 million in kickbacks starting in 2000.

Neither Yaron, a resident of Meadowbrook, Montgomery County, nor his attorneys could be reached for comment yesterday. No one answered at Yaron Properties, his offices on Arch Street in Old City.

Bucks County native Moshe Buchnik, a president of two asbestos-abatement companies, was also convicted after the four-week trial. Santo Saglimbeni, a former vice president of facilities operations at the hospital, and Emilio 'Tony' Figueroa, a former director of facilities operations at the hospital, were also convicted. The FBI said the two former hospital employees steered contracts to Yaron and Buchnik in exchange for the kickbacks.

The Inquirer apparently covered the story because Yaron lives in Philadelphia. Thus it treated the convictions of a former vice president and former director of facilities operations at New York Presbyterian/ Weill Cornell Hospital as afterthoughts.

Summary

Thus, in the last six weeks, we have been treated to stories that showed how New York Presbyterian/ Weill Cornell Hospital has devoted substantial resources to create luxury suites for rich patients, presumably because they may pay cash; while simultaneously hounding poor patients who could not pay their large medical bills, even though the hospital was receiving government funds for indigent care; and until recently was employing some executives now shown to have abused their authority.

The themes of the three individual stories should be familiar.

The first story was a reminder that the very rich are different from you and me in how they interact with the health care system. In many ways, the rich and powerful - some might call them the one percent - are personally protected from various aspects of health care dysfunction. For example, here we have discussed how wealthy executives seem to be able to obtain health insurance with benefits unheard of by the more common folk, and here we discussed how the wealthy and influential may get preferential hospital treatment. Thus, even one percenters who are not otherwise involved in health care may not be inclined to lend their support to any efforts to really reform the system.

Aggressive bill collection practices by hospitals which are supposed to serve the poor are also old news. We first discussed such practices occurring in New York City in 2004 - yes, this blog is that old. We also discussed such practices in Baltimore in 2008. Such practices are an example of mission-hostile management.

Finally, we have commented many times about misbehavior by health care executives, and discussed examples of fraud, kickbacks, and health care corruption. It has been unusual, however, for individual executives to actually suffer negative consequences when they induce systemic misbehavior in their organizations. Instead, the results are often legal settlements that only lead to financial penalties on the organizations that are no more than costs of doing business.

However, the juxtaposition of stories that a hospital has been coddling the rich, and simultaneously hounding the poor while it was lead by at least a few criminal executives is unusual. One would think that they should lead to an in-depth look at the leadership and governance of the institution in question, perhaps even to some reform of same. (By the way, one area of interest to such an investigation should be the presence of several former and current leaders of some of the failed financial firms that lead us into the global financial crisis or great recession on the board of that hospital, as we discussed here and here.)

However, so far I seem to be only one to note the inter-relationships of these stories, and their implications, while obvious, therefore remain anechoic.

So I get to repeat.... Health care organizations need leadership that understands, and knowledgeably upholds the organizations' missions and patients and the public's health. The leaders should be subject to incentives that align with these responsibilities, and should not be given opportunities to personally profit from activities hostile to the mission.

Proposed new Consumer Privacy Bill of Rights: Is It Too Late For Healthcare?

From the White House:

http://www.whitehouse.gov/the-press-office/2012/02/23/fact-sheet-plan-protect-privacy-internet-age-adopting-consumer-privacy-b

The White House
Office of the Press Secretary
For Immediate Release
February 23, 2012

Plan to Protect Privacy in the Internet Age by Adopting a Consumer Privacy Bill of Rights

CONSUMER PRIVACY BILL OF RIGHTS

The Consumer Privacy Bill of Rights applies to personal data, which means any data, including aggregations of data, that is linkable to a specific individual. Personal data may include data that is linked to a specific computer or other device. The Administration supports Federal legislation that adopts the principles of the Consumer Privacy Bill of Rights. Even without legislation, the Administration will convene multi-stakeholder processes that use these rights as a template for codes of conduct that are enforceable by the Federal Trade Commission. These elements—the Consumer Privacy Bill of Rights, codes of conduct, and strong enforcement—will increase interoperability between the U.S. consumer data privacy framework and those of our international partners.

1. INDIVIDUAL CONTROL: Consumers have a right to exercise control over what personal data companies collect from them and how they use it. Companies should provide consumers appropriate control over the personal data that consumers share with others and over how companies collect, use, or disclose personal data. Companies should enable these choices by providing consumers with easily used and accessible mechanisms that reflect the scale, scope, and sensitivity of the personal data that they collect, use, or disclose, as well as the sensitivity of the uses they make of personal data. Companies should offer consumers clear and simple choices, presented at times and in ways that enable consumers to make meaningful decisions about personal data collection, use, and disclosure. Companies should offer consumers means to withdraw or limit consent that are as accessible and easily used as the methods for granting consent in the first place.
2. TRANSPARENCY: Consumers have a right to easily understandable and accessible information about privacy and security practices. At times and in places that are most useful to enabling consumers to gain a meaningful understanding of privacy risks and the ability to exercise Individual Control, companies should provide clear descriptions of what personal data they collect, why they need the data, how they will use it, when they will delete the data or de-identify it from consumers, and whether and for what purposes they may share personal data with third parties.
3. RESPECT FOR CONTEXT: Consumers have a right to expect that companies will collect, use, and disclose personal data in ways that are consistent with the context in which consumers provide the data. Companies should limit their use and disclosure of personal data to those purposes that are consistent with both the relationship that they have with consumers and the context in which consumers originally disclosed the data, unless required by law to do otherwise. If companies will use or disclose personal data for other purposes, they should provide heightened Transparency and Individual Control by disclosing these other purposes in a manner that is prominent and easily actionable by consumers at the time of data collection. If, subsequent to collection, companies decide to use or disclose personal data for purposes that are inconsistent with the context in which the data was disclosed, they must provide heightened measures of Transparency and Individual Choice. Finally, the age and familiarity with technology of consumers who engage with a company are important elements of context. Companies should fulfill the obligations under this principle in ways that are appropriate for the age and sophistication of consumers. In particular, the principles in the Consumer Privacy Bill of Rights may require greater protections for personal data obtained from children and teenagers than for adults.
4. SECURITY: Consumers have a right to secure and responsible handling of personal data. Companies should assess the privacy and security risks associated with their personal data practices and maintain reasonable safeguards to control risks such as loss; unauthorized access, use, destruction, or modification; and improper disclosure.
5. ACCESS AND ACCURACY: Consumers have a right to access and correct personal data in usable formats, in a manner that is appropriate to the sensitivity of the data and the risk of adverse consequences to consumers if the data is inaccurate. Companies should use reasonable measures to ensure they maintain accurate personal data. Companies also should provide consumers with reasonable access to personal data that they collect or maintain about them, as well as the appropriate means and opportunity to correct inaccurate data or request its deletion or use limitation. Companies that handle personal data should construe this principle in a manner consistent with freedom of expression and freedom of the press. In determining what measures they may use to maintain accuracy and to provide access, correction, deletion, or suppression capabilities to consumers, companies may also consider the scale, scope, and sensitivity of the personal data that they collect or maintain and the likelihood that its use may expose consumers to financial, physical, or other material harm.
6. FOCUSED COLLECTION: Consumers have a right to reasonable limits on the personal data that companies collect and retain. Companies should collect only as much personal data as they need to accomplish purposes specified under the Respect for Context principle. Companies should securely dispose of or de-identify personal data once they no longer need it, unless they are under a legal obligation to do otherwise.
7. ACCOUNTABILITY: Consumers have a right to have personal data handled by companies with appropriate measures in place to assure they adhere to the Consumer Privacy Bill of Rights. Companies should be accountable to enforcement authorities and consumers for adhering to these principles. Companies also should hold employees responsible for adhering to these principles. To achieve this end, companies should train their employees as appropriate to handle personal data consistently with these principles and regularly evaluate their performance in this regard. Where appropriate, companies should conduct full audits. Companies that disclose personal data to third parties should at a minimum ensure that the recipients are under enforceable contractual obligations to adhere to these principles, unless they are required by law to do otherwise.

For an example of some of the major problems with healthcare data, see my Oct. 2009 post "Health IT Vendors Trafficking in Patient Data?"

I like the proposals.

The question is, regarding electronic health data: are these Federal proposals too little, too late?

Complex systems such as massive computer networks (with myriad stakeholders seeking to 'game' the system, skirt the boundaries of the law, and make handsome profits) can become uncontrollable.

-- SS

It's Remarkable That EHRs Can't Do What Med Students Are Taught in PGY3-4 ... And Remarkable That Academics Don't Push This Information to the Public

The following article's full text from the journal Applied Clinical Informatics (ACI) is not freely available, but the abstract says all that needs to be said:

Clinical Summarization Capabilities of Commercially-available and Internally-developed Electronic Health Records (Vol. 3: Issue 1 2012)

A. Laxmisan (1), A. B. McCoy (2), A. Wright (3), D. F. Sittig (2)

(1) Houston VA Health Services Research and Development Center of Excellence, Michael E. DeBakey Veterans Affairs Medical Center and Section of Health Services Research, Department of Medicine, Baylor College of Medicine, Houston, TX; (2) School of Biomedical Informatics, The University of Texas Health Science Center at Houston (UTHealth), Houston, TX; (3) Brigham and Women’s Hospital, Harvard Medical School, Boston, MA

Summary

Objective: Clinical summarization, the process by which relevant patient information is electronically summarized and presented at the point of care, is of increasing importance given the increasing volume of clinical data in electronic health record systems (EHRs). There is a paucity of research on electronic clinical summarization, including the capabilities of currently available EHR systems.

Methods: We compared different aspects of general clinical summary screens used in twelve different EHR systems using a previously described conceptual model: AORTIS (Aggregation, Organization, Reduction, Interpretation and Synthesis).

Results: We found a wide variation in the EHRs’ summarization capabilities: all systems were capable of simple aggregation and organization of limited clinical content, but only one demonstrated an ability to synthesize information from the data. Conclusion: Improvement of the clinical summary screen functionality for currently available EHRs is necessary. Further research should identify strategies and methods for creating easy to use, well-designed clinical summary screens that aggregate, organize and reduce all pertinent patient information as well as provide clinical interpretations and synthesis as required.

Put more directly, EHRs were poor at presenting relevant clinical information in summary form at the point of care.

(They're even worse after care is finished; see my Feb. 2011 post "Electronic Medical Records: Two Weeks, Two Reams" on the piles of 'legible gibberish' put out as official medical records of entire hospital admissions.)

The implications are that these systems cause physicians to waste time, weed through inordinate amounts of data in seeking what's important to help patients - and prevent errors. Thus, they are highly likely to increase clinician cognitive burdens and quite possibly reduce the quality of care.

But don't just take my word for that.

The 2009 National Research Council report made similar observations about EHRs in research overseen by two of HIT's preeminent pioneers, Drs. Octo Barnett and William Stead. See "Current Approaches to Healthcare Information Technology are Insufficient" and the accompanying full NRC report here that states:

"Current efforts aimed at the nationwide deployment of health care information technology (IT) will not be sufficient to achieve medical leaders' vision of health care in the 21st century and may even set back the cause ... The report describes difficulties with data sharing and integration, deployment of new IT capabilities, and large-scale data management. Most importantly, current health care IT systems offer little cognitive support; clinicians spend a great deal of time sifting through large amounts of raw data (such as lab and other test results) and integrating it with their medical knowledge to form a whole picture of the patient. Many care providers told the committee that data entered into their IT systems was used mainly to comply with regulations or to defend against lawsuits, rather than to improve care. As a result, valuable time and energy is spent managing data as opposed to understanding the patient."

I find several aspects of the new ACI study and its findings remarkable:

First:

Clinical summarization is an essential skill for patient pickups (e.g., taking over the care of a hospitalized patient or performing a consult on them), patient handoffs (such as when put in care of a covering physician), and other related informational reasons.

It is a skill taught (at least when I attended medical school) in the third and fourth years, also known as PGY3 and PGY4 (postgraduate years 3 and 4).

I was tested on my ability to perform this task adequately, and the quality of my clinical summaries were also evaluated during internship and residency training as one of many criteria for successful completion.

The author's results, therefore, indicate that EHR designers and implementers cannot, or will not, incorporate the skills of clinical summarization required of PGY3-4 medical students and interns into their products, even after several decades of product manufacturing.

I find this astonishing.

Second:

While I applaud the authors of the new ACI study for performing such work, which in the current environment of hyper-enthusiastic cybernetic technophilia in medicine might cause negative industry pushback, I find another aspect of their work astonishing (perhaps 'disappointing' is a better term):

They only published their findings in ACI.

ACI is an excellent new journal, but as it is a relatively specialized journal in a specialized domain, its content will reach probably on the order of thousands of people in a substantive way.

This very blog has surpassed one million "hits", we estimate; my Drexel University site on HIT difficulties (including its predecessors) has probably surpassed the quarter million mark.

My point is that, at a time when the Institute of Medicine, NIST and others have advised further study of health IT to decide if HIT is safe and efficacious (because they don't really know) in order to decide if FDA or other governmental regulation is needed, research findings such as that of Archana Laxmisan, M.D, Dean Sittig PhD, and Adam Wright PhD, deserve far wider dissemination than in a highly specialized, relatively new informatics journal.

Let me further go on to say that physicians, by the nature of their MD degree, and non-physician informaticists such as Sittig and Wright, should feel ethically compelled to actively diffuse this type of finding about an experimental, suboptimal and potentially dangerous medical device (as per FDA CDRH's designation as such) more widely.

They should not leave it to bloggers such as myself to do that work for them.

This is not to single out these authors, this journal or this article; the phenomenon is common. Health IT research findings of potential great import sit in scientific journals that rarely if ever get seen by the lay citizenry, despite the importance to their being informed about the technology's actual and potential downsides.

How about the New York Times or Wall Street Journal? Even YouTube? These observations are not at all to impugn publication in ACI in any way, whose editor in chief I deeply respect for publishing articles that could be viewed as "negative" about HIT. Wider diffusion in non-academic print media and/or "New Media", however, would get messages such as in the clinical summarization deficiency study out in a way that would have far more social impact - and help protect patients.

In other words, the authors of informatics studies need to actively "get out more."

After all, the industry and government spare no effort in positive publicity, even making unabashed marketing claims not backed by the scientific literature, such as in the Feb. 24, 2012 HHS press release at this link:

“We know that broader adoption of electronic health records can save our health care system money, save time for doctors and hospitals, and save lives,” said [HHS] Secretary Sebelius."

Unlike the relationships between, say, hydrochlorothiazide diuretics and reductions in blood pressure, or sterile techniques in surgery lessening infection, I don't think that in 2012 we "know" that at all (link).

-- SS

Feb. 26, 2012 addendum:

Regarding my final point about the HHS statement, a reader who wishes to remain unnamed, familiar with efforts outside the US, offers the following interesting observations:

"This [HHS statement from Sebelius] is political spin to try to keep some momentum in a project that is obviously failing. What is more they KNOW it is failing and can read the IOM report and the negative US and UK reports on EHR's.

The White House is clearly desperate to calm voter and healthcare professional opinion and this is another naked attempt to project the inevitable crisis to beyond the end of this year...well at least early November.

I know that this is true because Sebelius' language is exactly the same as that used by the UK Dept. of Health just before NPfIT completely folded...

Also, implementation rates of HIT projects must also be carefully scrutinized as they reflect the percentage of hospitals where something, usually anything has been switched on rather than the proportion where a full EHR, PACS, CPOE etc. has been achieved. A good question to ask is how many units are now paperless?"

-- SS

NO HITTING!! February is Teen Dating and Violence Awareness and Prevention Month

A number of our terrific seniors are engaged in teen health activities this month, Sonia on teen attitudes on sources of sexual health information, Jen and Rita on interactive strategies to raise awareness and knowledge about core health education important for youth, Patti Jo on college health issues.

During our group discussion, Rita mentioned the unhealthy trend of Date Fighting and it's association with relationship violence. (e.g. a young man grabbing a girl's wrist and punching her in the arm). Many of you may have seen youth 'horsing around' - punching each other or grabbing someone. This may seem innocuous, but the rates of interpersonal violence tell us another story. The inability to address anger and frustration or have role models who show how to do so in a healthy fashion;  the role of trauma as an layer that confounds health all contribute to interpersonal violence. Clinicians play a pivotal role in talking with youth and highlighting that they have different options. 

Here's the AAP's policy statement about the role of the Pediatrician in Youth Violence

Prevention http://www.clemson.edu/olweus/aap.pdf and here's ACOG's Tool Kit for Teen Care Tool Kit for Teen Care ACOG 2009 

There was another article of interest that I came across - Attitudes Affecting Physical Dating Violence Perpetration and Victimization: Findings From Adolescents in a High-Risk Urban Community   Ali, Bina; Swahn, Monica; Hamburger, Merle. Violence and Victims26. 5 (2011): 669-83.  This article discussed factors in adolescent hitting and dating violence behavior across gender difference lines. Boys and girls hit, maybe for different reasons. The support of their friends associated with behavior, among other items was associated with interpersonal / dating violence. There are number of interesting risk factors they found. One that I found interesting was that they found the lack of self-efficacy and illicit drug use were unique important factors associated with physical dating violence perpetration for girls only.

Violence prevention is a health issue - as clinician's we need to develop our antennaes and help young women and men to heal from trauma and to be able to lead healthier lives.

That’s Not Cool.com, is a national public education campaign that uses digital examples of controlling, pressuring, and threatening behavior to raise awareness about and prevent teen dating abuse. OVW also funds the National Dating Abuse Helpline at 1-866-331-9474. Teens can also text “loveis” to 77054 to reach an advocate or chat on line by clicking on the icon found on loveisrespect.org.

Invisibility and Lesbian Health

One size does not fit all. Even when we evaluate trends within a given group, we need to deduce what are the individual traits of the person in front of us and what are the population trends that we need to be aware of when assessing support structures, risk and treatment options.


Littlest Pride J.Foster 2008

 Lesbian women, similarly do not fit any one socioeconomic class, ethnicity or educational status. They are young and old; majority and minority; affluent and poor. Although media images of Lesbians may portray stereotypic images of androgenous women (and some are), others are not. So, you can't just 'tell by looking at her.' Rather you need to create a safe clinical space to enable her to tell you about herself and who is important to her and her life.
Lesbian's health risks can differ from heterosexual women.
Would you ever ask a heterosexual woman when she 'came out' as heterosexual?
Sexual minorities have barriers to health. These include: discrimination, presumed heterosexism, lack of inclusivity in environment/language/forms. 

ENVIRONMENT
FORMS When a Lesbian woman sits in a waiting room, surrounded by images of happy (heterosexual) couples, the visual impact is not inclusive. When her first visit form gives her the option of "Single"; "Married"; "Divorced" "Widowed."What are her choices? She can leave it blank (and be treated as single, even if this is not accurate.) She can check off married as she has been in a monogamous relationship for 20 years. More likely than not, if she opts for the latter, the health care provider in their perusal of the form will say: "So what does your husband do?" So now - she comes out and risks a distancing response by the clinician or she is forced to create a story that colludes with presumed heterosexuality. Creating a condition that forces lack of authenticate communication is not the best start to a clinical relationship.

MORE THAN YOU So you may be saying that you are hip to inclusive language (who helps you? who all lives at home with you? Who do I need to include in your care and what connection are they to you?) But it is more than you. You may terrific, warm, sensitive and inclusive - but they have to get to you. So part of being a responsible clinician is being responsible for oversight of your environment. Snickers or disrespectful treatment of patients by staff have to be addressed and potentially in-service/staff trainings on quality care delivery need to include LGBT issues.
MISPERCEPTION OF RISKS BY PATIENTS AND CLINICIANS
PATIENT CENTERED Lesbian women may not be accurate in assessing their health risks. For example, despite statistics that most lesbian women (2/3-3/4) have had sexual intercourse with men (and therefore have similar risks to heterosexual women.) Many Lesbians feel that they have minimal risk for STIs and for screening studies. Thus, they don't come into care for regular preventive visits.

INVISIBILITY Clinicians might 'miss' risks if they don't know that the woman is a Lesbian. Unclear many other minorities with whom the visual at least generates a question, Lesbian women look like heterosexual women. Additionally, they may feel that it is none of our business (their sexuality) and not include it in their health information. Assessing a support structure is essential when dealing with health issues (who will take to the test? who else should be in the room to hear this in order to reinforce/ decode/support you?)  Thus understanding the context of a patient's world and who they are and identify as is important if our goal is excellent care for all.
SPECIFIC HEALTH CONDITIONS AT HIGHER RISK Health specific conditions of note include cancer, cardiovascular disease (as a result of suboptimal weight and smoking), delay in health screening, Breast cancer (both from higher risk factors and fewer screenings), depression, anxiety, smoking, heart disease, uterine cancer, obesity (and therefore obesity related cardiovascular disease), alcohol abuse  They may be at higher risk of unabated estrogen related cancers if they are nulliparous (uterine, breast, etc.)
SEXUAL HEALTH PRINCIPLES Remember that there are three important domains to consider when understanding sexual health: orientation, identity and behavior. Orientation: to whom do I gravitate to/ sexual attracted to; Identity: who do I say I identify as; Behavior: what exactly do I do and with whom. We've discussed how these three elements are not concordant (a patient - can have an orientation but not identify as such;can have an identity but not have concordant behavior; can have a behavior but not feel that this relates to identity) There is an arcane term of sexual preference which many people in the non-health arena inaccurately use interchangebly or substitute for orientation. Orientation of sexuality for all people (and creatures) has an neural basis, so it is the preferred medical description. Preference implies that behavior is rather capricious (e.g. I'd like strawberry ice cream, no, vanilla.) We are all socialized in a heterosexual environment. I have yet to meet a person who wants to have discrimination or barriers.

QUICK SAFE SEX TIPS: HPV is a STI (as well as Chlamydia) that is found among women who have sex with women. So first, we need to advise women to wash up (as is true actually with everyone!). Hand washing is important in safe sex. Cleaning sex toys or using condoms and/or dental dams is also important. Lastly, getting regular health maintanence visits to be promote wellness is important. There are a number of resources for Lesbians to identify high quality respectful clinicians. Some cities have Rainbow Health Pages; resources can also be found on the Internet. There are national groups that promote Lesbian Health like our friends at UCSF Lesbian Health & Research Center

Updating our discussion on health issues for women who are lesbians, here's some additional resources.
JAMA September article mentioned - across the U.S. in med schools the coverage is low and variable in nature.

The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding Institute of Medicine 2011 Report available here

and the previous Lesbian Health IOM Report available here 

Is Body Image Protected in Lesbian Relationships?  Romantic Relationships and Body Image - Lesbian women are not 'protected' by body image issues by being in a relationship and are influenced by their self-perception; their perception of their partner and their partner's actual opinion of their body (image) (Markey, Markey, & Birch, 2004; Markey & Markey, 2006) and Markey, P. M. & Markey, C. N. (2011). The complementarity of behavioral styles among lesbian couples. Manuscript under review


Other web resources:
Gay and Lesbian Medical Association: http://www.glma.org/

Gay Mens Health Crisis (GMHC): http://www.gmhc.org/
CDC Gay and Bisexual Mens Health: http://www.cdc.gov/msmhealth/http://www.cdc.gov/msmhealth/


Lesbian Health and Research Center (UCSF): http://www.lesbianhealthinfo.org/http://www.lesbianhealthinfo.org/


LGBT Aging Project http://www.lgbtagingproject.org/


Lesbian and Bisexual Women’s Health Fact sheets (DHHS): http://www.womenshealth.gov/


American Public Health Association LGBT Initiatives (APHA): http://www.apha.org/about/Public+Health+Links/LinksGayandLesbianHealth.htm


Gay and Lesbian Advocates and Defenders  http://www.glad.org/
  New England Legal Advocates (lists laws and topics by state)


Makadon H. Improving health care for the lesbian and gay communities. New England Journal of Medicine 2006, Vol. 354 (No. 9), pp. 895-7.
 Coker TR, Austin SB, Schuster MA. The health and health care of lesbian, gay, and bisexual adolescents. Annual Review of Public Health 2010. Vol. 31. pp 457-77.


Coren JS, Coren CM, Pagliaro N, Weiss LB. Assessing your office for care of lesbian, gay, bisexual, and transgender patients. Health Care Manager 2011. Vol 30 (No. 1), pp 66-70.


Dowshen N, Garafalo R. Optimizing primary care for LGBTQ youth. Contemporary Pediatrics, October 2009, pp. 58-65.


Kann L, Olsen EO, McManus T et al. Sexual Identity, Sex of Sexual Contact, Health-Risk Behaviors Among Students Grades 9-12 – Youth Risk Behavior Surveillance, Selected Sites, United States, 2001-2009. MMWR, June 10, 2011, Vol 60, No. 7.


Katz K. Health Hazards of “Don’t Ask, Don’t Tell”. New England Journal of Medicine 2010. Vol 363 (No. 12), pp 2380-1.

WHERE TO BEGIN? Figuring Out What You Don't Even Know That You Don't Know?

It is pretty easy to feel comfortable with what we know. It is equally comfortable (especially in an insatiably curious person) to be comfortable asking lots of questions about a topic that we are aware we don't know enough or have enough knowledge (aka a 'Wiki dip' to answer a question).

But how do we get an inroad to asking a question when we haven't yet thought about it? When we don't even know that we need to know about it?  It is a huge challenge. The only approach I have come up with thus far, is to intentionally expose yourself to diverse experiences - stream a video on a topic or area you know little about; read a book (or even a blog!) on a topic that you stumble upon; go visit an art exhibit on a style that doesn't grab you; visit countries and work on gaining a different perspective.

So here'a health literacy example, I came upon while delivery a community engagement workshop that highlights 'knowing.' In our Philadelphia Ujima Network, we have the honor of training lay health ambassadors. These women and men are the informal opinion leaders and experts on health in their community based groups(faith based, social service, educational, etc.) Our training sessions happen on Saturday mornings and we have highly interactive sessions to learn things like "Know Your Numbers and Your Health." In one of these sessions, we were discussing heart health risks and hypertension. As I spoke to the group, I became aware that 1) they knew many people with hypertension; 2) they had heard 'a lot' about it; 3) they were aware that it was a very prevalent condition (HTN). But here is where they didn't know what they didn't know.

Because of health outreach successes of others, almost every knew that high blood pressure was associated with the reading of 140/90. But here was the gap. What hadn't been conveyed effectively was that this number represented the 'admissions ticket' to a diagnosis of hypertension,  instead of the audiences' interpretation on this number. Most of the group believed that controlled blood pressure MEANT a bp of 140/90 (or 'near that, 150/100'!). When I clarified that the target BP control range (at least) was 120-134/70-84, many were shocked. "How can you have that blood pressure if you have High Blood Pressure?" one asked.  "By taking medications," I responded. It was new news to the group - something they didn't know (that they needed to know), that good control of BP had readings that were the same as someone who didn't have High Blood Pressure. We didn't even get to the lower numbers needed if you also had Diabetes.

It made me wonder, from a literacy perspective - do we confuse people by accepting the common phrase of High Blood Pressure instead of Hypertension? (e.g. If you have High Pressure (this condition), how can it be low  or normal?)

Every opportunity to teach, we open ourselves up to the gift of learning.

Stimulating questions of the unknown, reminds me of the saying that when you learn a little about a topic, it is not too dissimilar to lighting a match in a huge auditorium - you become aware how little you know and how much more you need to know.

Gaining experiences that engage us in the uncovering of what we don't know and haven't yet thought of asking about, increases the number of matches we hold!

RESOURCES:
Health Literacy •Ask Me Three click here
•Teach Back Technique in Removing barriers to safer care. Health literacy and patient safety. Help patients understand. Manual for clinicians. Weiss, B. AMA Foundation
•Institute of Medicine (2010) Safe Use Initiative and Health Literacy: A Workshop. National Academy Press. Washington, DC.

READ MORE: A very interesting blog to read more on Knowing and Not Knowing:  
Atherton J S (2011) Doceo; Knowing and not knowing [On-line: UK] retrieved 23 February 2012 from http://www.doceo.co.uk/tools/knowing.htm #ixzz1nFFYq2B6  Under Creative Commons License: Attribution Non-Commercial No Derivatives