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When Opting Out Is Not an Option

Henrietta Lacks did not give researchers permission to take her cancer cells and study them. After she died in 1951, her family was not asked permission as her immortalized cells were used in countless laboratories. This month, the National Institutes of Health finally took a step in righting that wrong, announcing that the Lacks family would help decide who can access Henrietta’s DNA.

Today, getting a patient’s permission, often in writing, is standard in experimental medical research. Well, not always. Currently, there are at least nine ongoing studies involving 62 U.S. cities and towns with a combined population of more than 45 million that do not involve getting permission. They take place during emergencies, such as when ambulances arrive at an accident where patients are too injured to give permission.

For example, imagine this scenario based on a recent study sponsored by the University of Washington. You are involved in a car accident. Paramedics find you bleeding severely. They give you fluids to keep your blood pressure up, but they intentionally give you a bag of fluid that is smaller than the standard. Then they monitor your medical outcome and compare it with patients who received the larger amount of fluids. During the emergency, neither you nor your family know about the study.

Vital research

Research on medical emergencies is vital in determining how to care for people with life-threatening injuries because we often do not have proof that standard methods are the best. People involved should be told that is how their records are being used.

In 1996, the Department of Health and Human Services and the Food and Drug Administration passed regulations allowing research about emergency treatment to occur without permission. For a study to qualify, patients need to have a life-threatening conditioncurrent standards of care must be unproven or performing poorly, and obtaining permission must not be feasible (such as an unconscious patient or a patient whose condition does not allow time for informed consent).

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Prostate Cancer: Not a Good Week

The general practice of oncology seems to come in waves of disease.  One week every breast cancer patient is in trouble, another sees multiple new cases of lymphoma or leukemia, the next it as if someone is giving away lung cancer (or perhaps cigarettes) and then three patients with pancreatic cancer end up in the ICU.  This week a portion of the 240,000 yearly USA cases of prostate cancer walked in our door. The rush of cases served as a reminder that when it comes to this illness, we have a long way to go.

First, Allen. He is 73 years old and has prostate cancer in one out of twelve biopsies. The cancer has a Gleason’s Score of 6 (a measure of aggressiveness of the cancer tissue: more then 7 is particularly bad), which means it is not fast growing.  We recommended that given the small amount of slow growing cancer, Allen should be watched without treatment (“Active Surveillance”).  What Allen found so difficult about this recommendation is that his son was diagnosed with prostate cancer just one month ago and his son, who is 49, has a Gleason’s 8 Prostate Cancer on both sides of the prostate, and is scheduled for robotic surgery.  More than having cancer, Allen is hurt by the feeling it should have been him.

Then there was Robert and Mike. Robert was in the office at 10:00am for evaluation of his newly diagnosed prostate cancer, PSA blood test 32 (high), Gleason’s 7, with evidence of invasion through the capsule of the prostate gland.  Fortunately, because prostate cancer likes to spread to bone, his bone scan is normal.  Despite Robert’s relatively young age (66), the surgeon recommends external beam radiation therapy (RT) instead of operating.  What is bizarre and makes my head spin, was that at1:00pm, in the same exam room, in the same chair, I saw Mike.  He has recurrence of prostate cancer, previously treated with surgery.  Now Mike needs RT.  Although Robert and Mike do not know that the other has cancer, they have worked together in the same small company for 28 years, and consider each other friends.
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Data Points: Why Delay of the Employer Mandate May Not Actually Mean That Much

Last month, the Obama Administration announced that it would delay enforcement of the employer mandate component of the Affordable Care Act (ACA) in part due to opposition from the business community.  Opponents of the ACA cited the delay as evidence that the law was collapsing under its own weight, while ACA proponents downplayed the importance of the employer mandate in realizing the primary objective of the law – extending affordable coverage to millions of uninsured Americans.

Will delaying the employer mandate lead to the ACA’s demise?

Using economic modeling, we have found that the primary goals of the ACA will not be impacted by the delay, but the delay may impact one of the law’s key revenue sources designed to offset the costs of the coverage provisions.

Under the ACA, only firms with 50 or more full-time employees can be assessed penalties for not offering coverage under the employer mandate; small businesses with fewer than 50 employees are exempt.  Furthermore, more than 95% of large firms already offer insurance, implying that only a small pool of firms would need to alter their current benefit offerings to comply with the employer mandate.  Our model estimates that less than 1% of firms, employing about 2% of the workforce, would be penalized for not offering insurance to their workers if the employer mandate is enforced.

In fact, only about 300,000 workers (approximately 0.2% of the workforce) would lose their employer’s health insurance as a result of the employer mandate delay, according to our economic analysis. And many of those losing coverage would be able to get affordable coverage through a spouse, the newly created health insurance exchanges, or Medicaid.  Hence, delaying the employer mandate will have only a nominal impact on the ability of workers and their dependents to obtain health coverage.

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What I Need

So, the question has been raised: why am I doing this?  Why re-invent the EMR wheel?  What is so different about what I am doing that makes it necessary to go through such a painful venture?  I ask myself this same question, actually.

Here’s my answer to that question:

What medical records offer:
High focus on capturing billing codes so physicians can be paid maximum for the minimum amount of work.

What I need:
No focus on billing codes, instead a focus on work-flow.

What medical records offer:
Complex documentation to satisfy the E/M coding rules put forth by CMS.This assures physicians are not at risk of fraud allegation should there be an audit.  It results in massive over-documentation and obfuscation of pertinent information.

What I need:
Documentation should only be for the sake of patient care. I need to know what went on and what the patient’s story is at any given time.

What medical records offer:
Focus on acute care and reminders centered around the patient in the office (which is the place where the majority of the care happens, since that is the only place it is reimbursed)

What I need:
Focus on chronic care, communication tools, and patient reminders for all patients, regardless of whether they are in the office or not. My goal is to keep them out of the office because they are healthy.

What medical records offer:
Patient access to information is fully at the physician’s discretion through the use of a “portal,” where patients are given access to limited to what the doctor actively sends them.

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Is Big Sugar the Next Liability Target?

Growing paranoia is the hallmark of the aging process for me.  Although I am a generally affable sort (I know, it doesn’t always seem that way from my writing), I am also a fairly suspicious person.  I am starting to think that all the food industry’s sweet talk about the innocence of sugar is really just icing on a toxic cake and that we’ve all been sold a bill of goods.  In particular, I wonder — and part of me hopes — that Big Sugar might soon replace Big Tobacco as the favorite target of our most underappreciated and misunderstood national resource…the plaintiff’s bar.  There is no question we eat way too much sugar and that the increase in consumption has coincided nicely with both our rise in obesity and decline in health status even though we are living longer.

Not that I think the Tobacco Settlement (TS) was great social policy.  You can read my full view here; but, to summarize, as an immigrant and a person of color, a part of me resents the TS because all it did is push the burden of fulfillment of the financial terms into the hearts and lungs of people in Africa, Asia, and Latin America.  The smug satisfaction of tobacco opponents in the US and their glib dismissal of the impact on predominantly poor people of color around the world is first order racism.

Any analogous move against Big Sugar (BS) could be quite interesting.  There is, of course, the delectable duality of “what did they know and when did they know it?”.  Recently published opinions and data have forced me to think harder about just what goes on in the labs of companies like Coca Cola, Pepsi, Kellogg’s, Nestle, Domino, Mars, Hershey’s, etc.  No doubt BS defenders will say that sugar is “all natural” (ahem, so is tobacco), and safe when used as intended…and, that is where things will start to go awry for them.

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samsungvotbimageDo you use mobile apps to track your health? Do you wish for the ‘one health app to rule them all’? Your wish might be granted soon, and Samsung believes it can beat Apple in this race.

 

Watch here to see if they are right:

This conversation around the future of digital health innovation is beginning at the Voice of The Body event on Wednesday, May 28th, 2014 at 10:30 AM.

Join the conversation on Twitter with @VoiceofTheBody using #VOTB

The Return of the Greater Common Good

Congress is in recess, but you’d hardly know it. This has been the most do-nothing, gridlocked Congress in decades. But the recess at least offers a pause in the ongoing partisan fighting that’s sure to resume in a few weeks.

It also offers an opportunity to step back and ask ourselves what’s really at stake.

A society — any society —- is defined as a set of mutual benefits and duties embodied most visibly in public institutions: public schools, public libraries, public transportation, public hospitals, public parks, public museums, public recreation, public universities, and so on.

Public institutions are supported by all taxpayers, and are available to all. If the tax system is progressive, those who are better off (and who, presumably, have benefitted from many of these same public institutions) help pay for everyone else.

“Privatize” means “Pay for it yourself.” The practical consequence of this in an economy whose wealth and income are now more concentrated than at any time in the past 90 years is to make high-quality public goods available to fewer and fewer.

In fact, much of what’s called “public” is increasingly a private good paid for by users — ever-higher tolls on public highways and public bridges, higher tuitions at so-called public universities, higher admission fees at public parks and public museums.

Much of the rest of what’s considered “public” has become so shoddy that those who can afford to do so find private alternatives. As public schools deteriorate, the upper-middle class and wealthy send their kids to private ones. As public pools and playgrounds decay, the better-off buy memberships in private tennis and swimming clubs. As public hospitals decline, the well-off pay premium rates for private care.

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The Most Effective Obamacare Delay is Defunding

There is nothing controversial about stopping Obamacare. A majority of Americans dislike the law and want it repealed. Obamacare is disastrous for individuals, businesses, and doctors alike. It is unaffordable and unworkable, and the Obama Administration has also made it unfair by giving its pet interest groups waivers and opt-outs.

Conservatives are also united behind full repeal of Obamacare, despite what you may hear from the media and liberal operatives. The debate right now is on how this goal is best achieved.

Debate is healthy for society, and also for a movement. Conservatives should not want to become the empty echo chamber that has become the liberal political/media/academic establishment.

With that in mind, let’s turn to the debate over how to save the country from Obamacare. Our view is that the most effective way to delay Obamacare is to cut off funding. Congress can halt Obamacare’s disastrous impact by defunding it entirely before the law’s health insurance exchanges take effect on October 1.

This approach would prevent further implementation of the law; it is the only tactic that fully achieves the objective that advocates of delay seek to accomplish.

Some conservatives believe they can achieve delay without defunding by postponing the individual mandate and employer mandate for one year while leaving firmly in place the massive federal spending on Obamacare’s new health care entitlements—$48 billion next year, and nearly $1.8 trillion over 10 years. Others, acknowledging that a delay of the mandate is insufficient, are now calling for Congress to delay the mandates and the new entitlements.

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An “F” for Quality

Huge numbers of older persons transition from hospitals to the nursing home.  Often, an older hospitalized patient needs skilled nursing care before they are ready to return home.  In other cases, a nursing home patient who needed hospitalization is returning to the nursing home.  Older patients and their families certainly hope that great communication between the hospital and nursing home would assure a seamless transition in care.

But a rather stunning study in the Journal of the American Geriatrics Society suggests the quality of communication between the hospital and the nursing home is horrendous.  The study was led by researchers from the University of Wisconsin, including nurse researcher, Dr. Barbara King and Geriatrician Dr. Amy Kind.

The authors conducted interviews and focus groups with 27 front line nurses in skilled nursing facilities.  These nurses noted that very difficult transitions were the norm.  Sadly, when asked to give the details of a good transition, none of the nurses were able to think of an example.

Most of the nurses felt that they were left clueless about what happened to the their patient in the hospital.  They lacked essential details about their patient’s clinical status.  The problem was not the lack of paper work that accompanied the patient.  In fact, nurses often received reams of paper work, often over 80 pages.  The problem is that the paper work was generally full of meaningless gibberish such as surgical flow sheets that told little about what was actually going on.

Often the transfer information had errors, conflicted with what the facility was told before the transfer, and lacked accurate information about medications.

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EveryMove Launches the EveryMove 100 Health Insurance Index

If you spend time with health insurance companies there is a lot of discussion about the impact that mobile and social will have on their business ranging from how they market to how they empower consumers to better manage their health.   These discussions are not just tactical.   They strike at the heart of the transformation that health insurance companies are making to stay competitive, relevant, and attractive for the consumer who is ever more confused, skeptical and apathetic but increasingly powerful.  Which health insurance companies are making the early investments in consumer engagement?  The EveryMove 100 Health Insurance Index™ launched today to dive into that conversation.

The EveryMove 100 is a list of the top 100 health insurance companies that are making significant strides in engaging with consumers to help them take better control of their health as a partner in health versus just a processor of medical claims.  The intent here is to extend the influence of the consumer as they wade into new territory as individually empowered decision makers, whether through state, federal or employer exchanges.  The Index evaluated over 50 data elements and over 300 health insurance companies to determine the ranking.

The five primary categories the Index evaluated included:

  1. Social media presence and interactions (breadth and depth of engagement)
  2. Mobile investments (mobile web and app ecosystem)
  3. Website statistics (popularity ranking, refreshed content)
  4. Customer support access (availability/ease of access)
  5. Current consumer satisfaction (what are current members saying)

As you can see this is not an index designed to pass judgment on the quality of the network, timeliness of paying claims, care management efficacy, or other operational metrics.  Plenty of other rankings will provide that insight and they are important.  The EveryMove 100 is about which health insurance companies are making the investments to win the hearts and minds of the consumer who is going to look for a health insurance partner that makes them feel connected, important, and part of the solution.

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