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Genetic Testing – Should Your Insurer Know the Results?

April 27, 2012 2 comments
Genetic Testing is in Your Future

Genetic testing is the cornerstone of personalized medicine. It enables physicians to understand whether a patient’s DNA makes them more susceptible to certain diseases.

Currently patients with family history of various cancers are genetically screened for them. In the future, genome sequencing may become part of the screening that babies undergo after they’re born. This raises a number of ethical issues:

  • who owns your genetic information?
  • who has access to it?
  • where is it stored?

After a recent blog post, “Personalized Medicine in 3 – 5 Years?”  I received questions from readers on how results of genetic testing might affect their insurance coverage. They expressed concern that if insurance companies know their genetic weaknesses, they will raise rates or deny coverage.

The Law: Genetic Testing Nondiscrimination Act

The good news is that in the US, it is illegal for health insurance companies use genetic information to set rates or deny coverage. It is also illegal for employers to use genetic information in their employment, promotion or compensation practices. The law passed in 2008 and took effect in 2009. The name of the law is the Genetic Information Nondiscrimination Act or GINA.

Under GINA, health insurers can not ask any questions about genetic testing as part of the application process, at renewal or as part of any health screening or wellness program, if there is a penalty or benefit associated with those questions.

Importantly, this includes any discussion of family history. If your health insurer or your employer questions you about whether your father smoked, had a heart attack or if your mother had breast cancer, they violate GINA.

GINA applies only to health insurers and employers. It does not apply to long-term care coverage or life insurance. This is because of something insurers call “adverse selection“.

An example of adverse selection – someone learns they are likely to die at an early age, then buys large amounts of life insurance to assure surviving family members’ security. The insurer, unaware of the high risk plan member, cannot adjust its pricing to the risk profile. This hurts the rest of the policyholders in that insurance pool whose rates will rise to fund higher claim payments.

When Your Insurer Can See Your Results

Be careful; there are circumstances when a health insurer can ask that an individual undergo genetic testing and share in the results.

Sometimes the choice of proper treatment depends on a patient’s genetic makeup. In that case, to decide whether the treatment is medically necessary and whether the insurer will pay for the treatment, genetic testing is needed.

If the patient refuses to take the test before taking the treatment, the insurer can refuse to pay the claim. However, the insurance company can only see the information needed to decide the proper treatment and payment.

This is a very complex arena, and I don’t pretend that I am an expert.

The best advice is to discuss these issues in detail  before being tested. Understand your options for sharing and storing this information. Talk with your doctor, the testing company and finally, discuss with your family.

If your insurer is requiring the test for medical appropriateness, understand what information they will see and get a written statement from the insurer that the request is permitted under GINA and that it will not affect your rates or coverage.

For more detailed information go to this link at The Genetics and Public Policy Center, Johns Hopkins University.

What’s your opinion? Should genetic information be shared with insurance companies? Should your employer have access to this information? Post a comment and share.

photo credit: Cave of Knowledge

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Healthcare Social Media: Healing or Hurting?

April 20, 2012 10 comments

The Social Health Web

Social web sites are growing as a health care medium. They connect patients with each other and with care givers. Social media are a conduit for patients to share their health concerns and gain knowledge. But they may also be a rumor mill of misinformation.

So far the US healthcare system has been slow to adopt social media for the exchange of health information, leaving patients to find other sources.  Two recent studies show a growing gap between patients’ needs and hospitals’ delivery of a quality social health experience.

Hospitals Not Delivering

A new report by CSC shows US hospitals lag far behind hospitals in countries such as the Netherlands and the UK in the use of social media to deliver health information. According to the study, only 27% of urban hospitals and 10% of rural hospitals in the US deploy social media sites.

Yet according to a report by consulting firm PWC, patients use social sites like Facebook as an important source for health information. Of 1,024 consumers studied, 24% say they post health information on social media sites and 45% said they would use information from social media sites as justification for seeking a second opinion.

Health professionals should be alarmed by these findings. Facebook and Twitter take second guessing physicians’ medical recommendations to a new dimension.

Why anyone would use hundreds of Facebook friends as a sounding board for whether to have surgery is beyond me, but the evidence suggests that it’s happening with more frequency.  And with the ease and anonymity of internet publishing, anyone can present themselves as a medical expert.

Privacy Concerns Versus Information Sharing

Why don’t more hospitals use social media? Concerns about liability and patient privacy are the primary reason. Clearly, the freewheeling give and take of social media commentary interferes with the doctor-patient relationship.

But here’s the problem, patients will seek the information wherever they can find it. We humans are a curious sort. We pay no attention to our health until we get sick. Then we plumb the internet for any source we can find for as much information we can get.

Physicians often spend more time wading through patients’ questions about alternative treatments and self diagnoses than they do in actual treatment. The physician’s role as the sole source of medical information went out of fashion with Marcus Welby, M.D.

It’s a classic case of if you can’t lick ‘em, join ‘em. Why not be seen as the best source of medical information and clinical sharing? It’s unfortunate that aversion to risk prevents hospitals from using social media’s potential for healing by placing the patient at the center a continuum of care through social communities of physicians, case managers, family and friends.

What do you think? Are hospitals obligated to create social media sites and share health-related information with patient communities? Share your comments by clicking on “comments” at the top of the page.

Photo credit: Health in 30

Four Ways Personalized Medicine will Change Doctor-Patient Relationship

March 27, 2012 10 comments

A slight mutation in the matched nucleotides c...

Personalized Medicine Gains Traction

Since completion of the Human Genome Project  in 2003, the promise of personalized medicine (PM) caused many to consider its effect on bio-science, pharma and healthcare delivery.  Physicians contemplate a future in which patients enter their office equipped with symptoms and a list of the genetic variants they posses and questions about what they mean.

The problem hasn’t materialized because  the cost of discovering and developing drugs customized to the needs of a sub-genetic group have been prohibitive. Today however,  IT frameworks like Hadoop deploy massively powerful, inexpensive processing power. Now the huge genomic database becomes a more accessible resource to develop medications that are effective for targeted patient populations.

These new drugs offer improved cost-effectiveness over blockbuster drugs  for conditions like high cholesterol or hypertension.  Physicians will spend less time and money in trial and error to find which drugs work for which patients.

Disruption in Healthcare

In my last post, I raised the question, “Will Personalized Medicine have a disruptive influence on medical practice?” Those familiar with Christensen’s theory of disruptive innovation understand that market leaders focus resources on product development for advanced users who don’t care about cost. Often products contain features and benefits that don’t matter to most users. This leaves room for competitors to develop new technologies and business models to meet the needs of average consumers and “disrupt” the market leader’s business from the bottom up.

Healthcare is not like other businesses. The role of payers and policymakers as well as the interests of public health intervene and create barriers to natural market forces.  These factors slow the rate of disruption. Yet there will be fundamental change in the way physicians and patients interact as PM gains traction.

Four ways PM will disrupt healthcare delivery

#1 Predictive, not reactive:

  • Rather than waiting to treat symptoms of a disease that occur, physicians can predict which diseases a patient is susceptible to.
  • The physician develops a personalized health plan to prevent or detect these diseases early.
  • Patients will become a true partner in the delivery of healthcare, monitoring their progress and reporting results to their caregivers.
  • Home testing may replace testing in the doctor’s office.
  • Fewer office visits, less face time with the PCP is less expensive, but is it better medicine?

#2 More information on more treatment options:

  • Physicians  prepare to answer patients’ questions about new genetic tests and the treatments for their sub-group.
  • Continuous access to up to date, peer-reviewed medical information will increase dramatically.
  • As more options for care become available, will the patient’s trust in the sources of clinical information and outcomes begin to erode?

#3 New ethical and moral obligations: 

  • What is the physician’s role with patients on the moral and ethical questions surrounding access to genetic tests?
  • If one family member wants genetic testing and another doesn’t and a serious disease potential becomes known, what is the physician’s obligation to inform?

#4 Physician’s role in decision to test:

  • Should patients have their own testing done without supervision of a physician?
  • Should tests be offered for genetic disorders for which no treatment is available?
  • Who pays for development of testing and treatment for small sub-groups of patients?

What do you think? Will PM disrupt or enhance healthcare delivery?

Mission-Driven Social Media

February 28, 2012 2 comments

A few years ago I took a consulting assignment for an incoming college dean.  My job – write the school’s new communications plan.  In my first meeting I asked what the school’s mission was.  “Every college and university has basically the same mission,” she said.  I explained that a unique mission is key to a high quality communications program.

There was an effort among the senior faculty to write a mission statement but it became the product of consensus.  I’ve learned it takes a lot of hard work to create a mission statement, particularly if you’re not a founding father.

It was a missed opportunity to create something powerful.  Mission-driven communications integrate naturally; stories gain context.  They are the basis of great brands like IBM and Apple.

I remembered that time when I learned about a unique and powerful social media strategy at the Mayo Clinic, The Center for Social Media.  A video presentation by CEO John Noseworthy, M.D.  introduces the center as extending their founders’ mission, now over 100 years old.  Drs. William and Charles Mayo wrote, “The best interest of the patient is the only interest to be considered and in order that the sick have the benefit of advancing knowledge, union of forces is necessary.”

Dr. Noseworthy explains how that mission came to life in the early years of the Mayo clinic, “It drove the Mayo brothers to invent the concept of group medical practice at a time when the notion was considered a breach of physicians’ individual responsibility.” They used that concept to create other best practices and shared them with physicians around the world.

How does this tie in with social media? Social media are a great way to assure that the patient receives a continuum of coordinated care.

One early Mayo innovation was the unified patient medical record. “It’s goal is to build a network around the patient.” says Dr. Noseworthy. That is the opportunity for social media. Networks of physicians, support staff and other patients may improve outcomes when coordinated through the clinic.

Lee Aase is the director of the center.  In a “Conversations on Health Care” podcast, Mr. Aase details the many ways in which the center’s programs define excellence in patient centered care through social media.  In each case, the linkage to the Mayo Clinic mission is clear to see.

Visit the center’s website, see the video blogs from physicians, read the patient stories. There is nothing slick or artificial. An aura of authenticity surrounds this program.  This its true in part because of its connection to the clinic’s mission.  Other academic medical centers have similar programs and they are well executed.  But the visceral connection to the institution is often missing.  The whole is lesser than the sum.

Well done Mayo Clinic.

Photo credit: Salvatore Vuono
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