I learned everything I didn’t want to know about the health care system, but I eventually realized that the knowledge I acquired as an advocate is equally critical to health care practitioners if they are to provide quality health care, i.e., the right care the right way at the right time.  Adding the dimension of patient-centered care means care is delivered the way patients need and want it. 

Right now, we are still learning how to advocate for the right care the right way at the right time.  It looks like we’ll have to wait a while to get care the way we need and want it.   

As a parent and a physician, I had to be extra careful in the pediatric health care world.  If I came across as too demanding, I would have been dismissed as a neurotic or helicopter parent.  (I know a couple of physician-parents who were erroneously said to have Munchausen’s Syndrome by proxy.)  If I didn’t advocate, I risked danger.  In every situation, I had to find the fine line between objectivity and subjectivity, to assure myself that I truly was balanced in my approach. 

The problem is that even though most of us know what to advocate for, we are still dealing with human beings in the health care system.  They have pressures and barriers, they have egos, they have feelings – and they have the knowledge.  The art of advocacy is getting health care providers to do the following:

• Provide the best care so the patient achieves and maintains optimal health, and
• Empower patients with the knowledge needed to make informed decisions and self-manage their health and health care. 

The art of advocacy should empower health care providers to practice the art of medicine.

Parent advocates have another equally complex system to tackle: the education system.  After learning about all the various laws, e.g., American with Disabilities Act, Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act, parents have to learn about the culture of their child’s school as well as the county and state educational systems.  Then, parents have to advocate with human beings in the educational system to practice the art of education.

When our children grow up and enter adulthood, all the rules change and we are back at square one again.  The only consistency is that the systems are devoid of supports, and as parents, it is up to us to start over and learn from scratch on how to advocate for young adults with childhood-onset conditions and disabilities.

Related posts:

1. The Fate of Children & Young Adults with Chronic Medical Conditions & Disabilities.
2. Now You See Them…Now You Don’t: Health Care Transitions for Young Adults with Chronic Medical Conditions and Disabilities
3. Health Reform: Tinkering with the Health of Children with Pre-Existing Conditions.

If the staff places an identification bracelet on your wrist, take a look at it and verify that all of the information on the bracelet is correct. Although the staff should review the information on the bracelet before the procedure, this may not always happen. I knew of a healthcare professional that was having a minor diagnostic procedure performed, and after the procedure, she noticed that she was wearing the identification bracelet of a male patient.

Use the call light. If the staff instructs you to use the call light before getting out of bed, do it. You should not be concerned that you are bothering them. They want you to call for assistance so that you will not fall.

Speak up if you have questions or if you are unclear about the instructions you have been given. Also if the staff has not provided discharge instructions to you in writing, request that they do so.

If you are given a medication that you do not recognize, ask what it is and what it is for, and inform the nurse that the medication does not look like a medication you normally would take. If they respond with, “the doctor ordered this”, that is not an adequate answer to your questions.

No news is not good news. Don’t breath a sigh of relief because you have not heard from your physician’s office regarding the results of a test. Call the office for the results and you may want to request a paper copy of the results too. In a study published in the June 22, 2009 issue of Archives of Internal Medicine there was found to be more than a seven percent failure rate in communicating abnormal test results.

Use a hospital or surgery center that is accredited. Ask if the facility is accredited either by The Joint Commission or another recognized accrediting body.

Patient safety is all about you.

Related posts:

1. Savvy Health Advocate: How Math May Save Your Life and Help You Evaluate Recommended Treatments
2. Nurses, Lawsuits and Patient Safety
3. Thoughts on Being a Patient Advocate – How to Compose a Patient Advocate Agreement

This month’s health insurance issue: Linda is having surgery in the morning, but at 4 p.m. the afternoon before, she gets a call from her HMO requiring her to post a $400 advance deposit — or the surgery is off. What should she do?

The situation: Our client Linda was scheduled to have surgery using a surgical group that had negotiated fees with her HMO carrier. Besides being told to post $400 in advance, she was told she needed to sign a form stating she would pay whatever fees the carrier would not pay to the doctor.

This came despite the fact that the surgeon was in her HMO network and Linda had gotten the proper referral and authorization from the carrier. In fact, her policy dictates that when a provider has signed a contract with an insurance carrier, the patient is held harmless from all fees associated and cannot be asked for additional payments other than applicable copays, deductibles, and coinsurance. In this case, the policy had a $20 doctor copayment and 100% coverage, with no hospital copayment.

Linda called us in a panic, and we immediately phoned our contact at her HMO. Due to the late hour, our contact couldn’t do anything until the following morning, when she would have a representative from provider relations step in. And after a long discussion with the insurance company, Linda did not have to post the deposit and did have a successful surgery.

The solution: Don’t assume anything before having surgery. Get on the phone and make sure you are covered.

1. Contact the insurance provider and verify all benefits. Always get the name of the representative you talk to, as well as the department name and number. Try to speak with a supervisor. Also, note the date and time you had the discussion, since all calls are recorded and can be pulled to make sure accurate information was given.

2. Get all pre-authorization agreements in writing. Typically, the doctor’s office will call, but you should insist on getting it in writing, too, so you can be sure everyone involved in the surgery — the surgical center, hospital, anesthesiologist, doctors, etc. — is covered by your health insurance plan.

3. Understand your policy and be clear about the items that you may be required to pay for. Many hospitals, surgical centers, radiological providers, and labs will send you a bill in addition to submitting it to the insurance company. Remember:: Never pay a bill unless the insurance company has received it first and re-priced it (including applicable discounts) and until you have received evidence of benefits that match the bill.

The painful truth: Unfortunately, the system is broken. Insurance carriers, doctors, and patients will continue to eek out whatever they can from the health-care and insurance system until new policies are in place that make it clear exactly what the contract is that they are entering into. If anything is unclear in your agreement, a new one needs to be worked out that will include cost, payment, and what insurance covers.

If we were the Health Insurance Ambassadors: We would require that all doctors notify the patient about the exact cost of the surgery before the procedure. The patient would then have a full understanding of the costs associated with the surgery and the doctor would receive the appropriate payment.

In defense of doctors, we would also change how they take payments. Doctors do not ask for money upfront. They provide a service and hope that they will receive payment afterward. Perhaps they should swipe a credit card before the procedure or at the time of an office visit.

Originally posted on http://www.beinkandescent.com/articles/251/scott-golden-and-stephanie-cohen.

Related posts:

1. You Gotta Laugh: Life in the Trenches of the Health Insurance Business
2. Life in the Trenches of the Health Insurance Business: Calculating Coverage for Adult Children
3. Life in the Trenches of the Health Insurance Business

This amazing achievement is no accident. The ethos of nursing, since Nightingale, has gone well beyond the familiar “Do No Harm”. Ours has been an ethos of patient advocacy. We teach and enforce it with the same intensity of focus we give to medication administration. I think of it as a hybrid ethos, merging the principle-based ethics of Lawrence Kohlberg (read masculine) with the relationship-based ethics of Carol Gilligan (read feminine). Early on, as we became increasingly adept at articulating our “Code of Ethics”, the Hastings Center fretted with our fixation on patient advocacy.  We insisted and persisted. I am proud of that.

This persistence about patient advocacy shapes the daily lives of practicing nurses. It is achieved in health care settings where hierarchic structures are designed to protect the hegemonic power of physicians and health care administrators. It is perpetuated in civic discourse. It is rarely visible, often only made public in whistleblower lawsuits where a nurse was fired for being a patient advocate, i.e., challenging a practice or person that puts the patient at risk.  It is complex work, behind the scenes, often made exceedingly difficult and even career threatening.

When I was a very young nurse, a nurse leader advised me as follows: “If you haven’t been fired by the time you reach the age of 30, you probably have been co-opted”.  At the time I found this advice disturbing. Over time, through a number of experiences that pivoted on professional integrity and the cost of protecting it, I have learned the wisdom of her message. I agree with her.

The media exacerbate the challenge. It may surprise the sponsors of “Nurse Jackie” to discover that thousands of nurses every day take on the challenges she faces and do so without becoming addicted to drugs. Finally, a nurse that is a patient advocate, but apparently only able to do so while abusing drugs and having affairs. The distortion of nurses and nursing by the media is as troublesome as their willingness to render us invisible or their naïveté about who we are, what we do, and how we do it.

But indeed, we persist. We advocate for our patients with a fierceness unknown to most patients and families. We view it as a matter of ethics. As with other fields of endeavor, we have a normal curve distribution of effectiveness in our efforts, courage in our convictions, and success in our outcomes. Nonetheless, I will give here the advice I give to anyone facing an important health event.

Find the best nurse you can. Tell that nurse that you have selected them as your personal advocate. These advocates should be taken to appointments, charged with asking important questions, protective as needed. These advocates should be at bedsides before, during, and after surgeries and other important medical procedures. These advocates should be encouraged to question whatever needs questioning on the behalf of their patients. Most nurses understand this role: they have been doing it for family and friends their entire careers. It would also be nice if you would acknowledge the gift they give in doing this important work.

Patient advocacy, for nurses, is an issue of professional ethics. Count on it!

Related posts:

1. Patient Advocacy – When Disruption Creates Win Win Win
2. On the Meaning of Patient Advocacy
3. Memo to Obama and Daschle Regarding Ethics in Healthcare

Kelley Connors

This post was written by Kelley Connors, President, Founder, Real Women on Health!

Patient advocacy has a new meaning for me – for years I was only looking at one piece of the advocacy puzzle. Today, I see the whole picture from the patient as well as organizational standpoint.  One’s view certainly intensifies as your passion rises when your own family member or friend needs help navigating the healthcare system to receive the right care.

For years, I’ve been behind the scenes of educational campaigns that patients benefited from with pharmaceutical industry support; think Go Red for heart disease awareness among women, and Susan G Komen’s grassroots efforts to increase public awareness about the importance of self-breast exams and mammograms.  With women’s lifetime risk of breast cancer being one in eight and heart disease the leading cause of death among women, I’ve been hired as a PR specialist to develop advocacy campaigns for companies to help women gain the knowledge they need to effectively prevent and treat a myriad of women’s health conditions.

But, things change when it’s your dad who has chronic myelogenous leukemia (CML).  And, you start to dig in to find out as much as you can about the condition, how to pay for a drug that costs $8,000 a month, and how to coordinate care when oncologists – as valued as they are – may miss concomitant conditions that impact how a patient feels and responds to CML treatment.

Here’s what I’ve learned:

Being an advocate is about being curious, passionate and a seeker of information. For example, patient medical records are full of data that will help you close the gaps in care, should you or your family member need hospitalization.   Can you access your medical records quickly should you need to make a life or death decision?  The federal Health Insurance Portability and Accountability Act, which governs access to medical records, gives hospitals and doctors 30 days to respond to a request for medical records, although some state laws provide for a shorter time frame, and in urgent situations, such as a transfer to another hospital, it’s customary for hospitals to move more quickly.

Be prepared to make your request in writing and, to shorten the time frame, ask your physician’s office (the new physician in the case of patient transfer) to request them.

Remember, medical records are yours and they contain the doctor’s notes and instructions as well as diagnoses that often are communicated but likely not “heard” or “understood” by the patient or family.  

One way to get your medical records more quickly is to seek out providers who use electronic medical records so the records can be e-mailed to you. Some providers even have an electronic portal so you can read your records anytime you want on a secure Internet site.

In summary, it’s one thing to work in healthcare PR, creating the patient advocacy programs for large pharmaceutical companies but when its your family member who needs help, the word patient advocacy fills in with passion and purpose which is important but never enough.  You need to understand the system and how it’s broken to identify the gaps.

From a PR point of view, patient advocacy often helps pharmaceutical companies educate patients about a specific disease or treatment, but don’t forget their motives. That’s why is you ever need a patient advocate “on the ground”, it would be a good idea to check out Disruptive Women Trisha Torrey’s web site, AdvoConnections. (http://www.advoconnection.com/index.asp)

She is the ultimate patient advocate and has a wealth of personal experience, knowledge and connections to help you find and receive the best care possible for yourself or family member.  This is what I am learning is the meaning of patient advocacy.

Related posts:

1. The Ethics of Patient Advocacy
2. Patient Advocacy – When Disruption Creates Win Win Win
3. Savvy Health Advocate: Patient Safety Is All About You

So I decided to create a medication chart that allowed her to track her medications more easily and ensure she was taking them correctly. We then showed the chart to each of her physicians and pharmacist.  The result was a dramatic change in my mother’s medication regimen.  The chart enabled her physicians to view what they and all her other doctors were prescribing. They soon realized just how many medications she was on and that some medications were actually counteracting others.  Many prescriptions were changed or stopped and over time she went from taking 16 medications to nine.

Adverse events related to medications are the fourth leading cause of death in U.S. for patients over the age of 65.  This startling statistic led me into the patient-advocate role.  Since that time my own experiences have continued to reinforce my belief that individuals need to take control of their health and work to make sure all their healthcare providers, caregivers, and/or family members are working together as a team.

After being faced with several health scares in 2008, I decided to have an MRI breast scan for peace of mind.  I had learned that the scan was the best diagnostic and screening tool for women with large, dense breasts and a family history of breast cancer.  Since I had a mammogram six months earlier, which was normal, my physician did not think the MRI was necessary.  However, I decided to have one to be certain I was breast-cancer free.  To everyone’s surprise, the scan revealed three spots that biopsies confirmed to be multifocal breast cancer.  Since I knew my own body and had educated myself about available screenings, I may have saved my life because I was told a mammogram might have taken years to pick up the spots. This may not be the right course for every woman, but everyone should know that this tool exists.

I made the decision to undergo a double mastectomy and because it was caught early, I did not need chemotherapy or radiation.  However, I was prescribed Tamoxifen, which is a drug that can help prevent cancer from reoccurring. Like many medications, you must be careful about what other medications you are taking.  I discovered that the anti-depressant I was on counteracted the benefits of Tamoxifen.  Again, I acted as my own advocate.  Remember: Medications can save your life.  However, you must take them correctly and be very careful about what else you are taking, eating, or drinking in combination with your prescription.

Medical errors by physicians and hospitals are still prevalent and a staggering number of patients are misdiagnosed every year.  Compounding the problem is the fact that numerous prescriptions prescribed by various physicians are not being reviewed on a regular basis and patients self-medicate.

Patients should not just depend on a physician’s files of their medical information but take it upon themselves to create their own permanent medical records.  Before going into a medical appointment, everyone should be prepared with the following information:

• List of current medications and dosage
• List of ailments
• Medical history (if seeing a new physician)

A patient should also be prepared to explain to the doctor exactly what their problem is and offer an overall view of their health.  If a serious condition exists, perhaps they should bring someone else to the appointment.  In many cases a friend or loved one can interpret the information the doctor provides more objectively and be ready with questions that someone in an emotional state might have difficulty asking.

Ultimately, it is the responsibility of the individual to be their own advocate, know their own body, ask questions, and make sure everyone that is part of their healthcare “team” is communicating and basing decisions on the current, accurate medical information.

Related posts:

1. A healthcare and medication organizer that could help medication adherence
2. Savvy Health Advocate: How Math May Save Your Life and Help You Evaluate Recommended Treatments
3. Thoughts on Being a Patient Advocate – How to Compose a Patient Advocate Agreement

Now, just over a year later, I am humbled by the stories I hear from thousands of women who visit EmpowHER.com every day. Women are advocating for themselves, for loved ones and teaching other women how to do the same.

For example, one member of EmpowHER was suffering from irregular periods, heavy bleeding and severe depression. She had several procedures to remove polyps, but her depression remained and the bleeding came back. She had no idea what was wrong with her and doctors just recommended more procedures and anti-depressants. In her own words, she was on the brink of taking her own life. For her it was that bad. This woman discovered EmpowHER and, after watching the video where I tell my story, realized there was hope. Within 24 hours of sharing her story with the EmpowHER community, and us helping advocate for her; she was on a brighter path. Now she has a new doctor who has helped her manage her way to improved health. Her life is changed. Forever!

Then, there are times I see others who find advocacy in the most surprising ways, as in this abdominal case. An EmpowHER reader’s partner of 18 years had been having odd symptoms, but neither of them thought much of it. Then one day, after reading an article on EmpowHER about the symptoms of an aortic aneurysm, she realized that he was having the same exact symptoms described in the article. She talked to him about this and advocated that they needed to take action. He saw his doctor that same day and was rushed in an ambulance from that appointment to the hospital for immediate surgery. His doctor told him he had an aortic aneurysm and that he didn’t have time to waste. His doctor told him that his situation was dire, the aneurysm could have burst, and he would have died. The woman came back to EmpowHER and shared their story and credits EmpowHER for saving her partner’s life.

These are just a couple of the stories I hear about every day that reinforce our mission – to improve health and change lives. There are now countless simple and free ways you can get involved to do just that – improve your health and change your life, or that of your loved ones. Here are some ways you can start your own health advocacy journey today:

• Ask your own health question, and receive a guaranteed response within 24 hours
• Share your health story
• Join a group and find women like you

Related posts:

1. An Introduction to EmpowHER’s 1,000 Women Campaign
2. Signs and Symptoms
3. Learning to be Your Own Best Advocate

Since then I’ve met more than 10,000 advocates – some of them children – in 26 countries. In their work they help millions of patients and families address hundreds of diseases and the consequences patients face to get insurance, education, housing, employment and civil rights. In many cases, they or a loved one were in dire need of help they did not receive, so they vowed to help others. It was  a way to reclaim  power, to work through grief or to constructively use anger.

It’s impossible to be with advocates and not respect their dedication, courage and energy. That is especially the case for those working ‘closer to the ground’ where the real suffering of effected people is most palpable. I especially admire them when they venture into unfamiliar policy arenas to tell the stories they hope will create better solutions, particularly from governments. As Chair of the National Commission on Rare Diseases, their stories touched my heart and I still remember their faces.

Regardless of how well they succeed on behalf of any one patient , with one policy maker or in one disease situation however, there will always be more to do. I’ve seen advocates respond to this; having met their initial objective they band with others to help in new ways.

The past few years have not been kind to advocates. Though health reform gave them some important – but not sufficient – wins, their work is far from over. As I work with them now, these times feel tougher:

• Recession-era fund raising is more difficult and less successful,
• Clinical guidelines, built to address population health, ignore important individual differences, enlarging the scope of advocacy needs,
• Political opportunism is driving a wedge between advocates and companies, who have long had productive collaborative research, education and patient support programs

As I watch health care, not just in the US but globally, advocacy has have never been more important… or more challenging. It is for that reason I believe it’s time for the field to evolve – and be recognized – as a true profession within health care.

Full time employment does not make one a professional and home-spun approaches, learn-as-you-go communication and Tsunami-sized passion may have been enough to move mountains in the past, but those times are over. The world is more complex and whatever their cause, advocates face formidable competition for time, attention and resources.

Advocates could be better prepared if advocacy was a profession, and I believe it could evolve to that next level. This would be accomplished by creating a professional society. Yes, each advocate already has an association related to their cause and that group provides them with some of what they need, but a society for professional advocates would function as a trans-disease, trans-cause group providing more.

I would envision this as an organization of individual advocates from any sector in which advocates work – whether in non-profit associations, existing trade associations, for-profit companies or government. Over time, in much the same way that some societies certify the excellence of their members, this one would do likewise. It would:

• Develop ethical codes and professional standards of performance,
• Develop minimum standards for training,
• Provide venues to accomplish trans-disease, trans-cause common objectives,
• Provide tools for succession planning during generational turnover among the various advocacy groups, including job boards at national, state and local levels
• Publish journals reporting on best practices and advocacy professional development,
• Develop an academic base of support for skill-building education, continuing education and best-practice research and,
• Create its own government affairs capacity, not to address specific health or disease issues, but to be promote the value of a profession of advocacy overall at local, state, national and global levels and in efforts related to patient education and outreach, ombudsman and case work assistance and policy and political activism on behalf of patients. A professional society could do something that no advocacy group has been able to do well (so far) and that is to defend the good work of its members, for example, directly addressing the many claims of conflicts-of-interest from relationships with companies.

All of these efforts would improve the standing of advocates within their organizations and within policy debates and it’s about time that happened.

Related posts:

1. The Ethics of Patient Advocacy
2. The Society for Women’s Health Research: A Case Study of Advocacy for Women
3. The Art of Advocacy From the Perspective of (Physician) Parents of Children with Childhood Onset Health Conditions and Disabilities

Advocacy and Communication with the Public

In addition to providing the latest research on conditions that affect women differently from men, SWHR’s education and communications efforts also emphasize that women need to become advocates for themselves and their families. SWHR is founded on the belief that health can be improved through research efforts and this new knowledge must be communicated and translated into individual care, which requires an up-to-date, current exchange of information between health care providers and their patients. 

SWHR’s first major public educational effort was the “Woman Can Do” campaign, to educate and recruit more women about becoming involved in medical research. After the regulatory changes mandating women’s participation in research, SWHR was made aware of the facts that researchers had difficulty finding women to participate in research studies. In 2003 nearly 90 other organizations joined SWHR’s Alliance for Women in Clinical Research to educate women about medical research and ways they can participate. The campaign continues today and additional information can be found on the Women Can Do website .

To further help promote the importance of providing the public with valuable and accurate health research information. SWHR annually presents the “Excellence in Women’s Health Research Journalism Awards” to honor journalists who excel in this arena.

SWHR works to provide women, who make about three-fourths of the health care decisions in the United States, with advice that communication with healthcare providers is a two-way street and with the information that allows them to participate in decisions impacting themselves and their family members.  SWHR’s educational programs and written materials, as well as our web site, also serve as resources for practitioners involved in women’s health issues.

SWHR is committed to ensuring that women’s health remains a high priority on the national agenda, that sex differences become more widely recognized as vital to healthcare treatment options and to advocating for  increased funding for related research.  SWHR will continue to partner with the widest possible range of healthcare providers and policy makers to gather evidence-based knowledge and then communicate it to Congress, the scientific research community, as well as to healthcare providers and the public.

Related posts:

1. The Art of Advocacy From the Perspective of (Physician) Parents of Children with Childhood Onset Health Conditions and Disabilities
2. One more chance to catch Disruptive Women on Real Women on Health!
3. The Ethics of Patient Advocacy

You may want to think twice before your next visit to the doctor’s office. According to Dr. Barbara Starfield’s now-famous study, iatrogenic deaths (those resulting from treatment by physicians or surgeons) are the third leading cause of mortality in the United States, resulting in the loss of 225,000 lives per year. Of that total, nosocomial (hospital-acquired) infections kill 80,000, physician errors claim 27,000, and unnecessary surgery results in 12,000 deaths.  

But iatrogenic errors aren’t the only reason people should avoid hospitals, says physician and health care administrator Archelle Georgiou. She tells Big Think that relying on doctors may actually shorten your lifespan. Georgiou bases this idea on her studies of the earth’s so-called “blue zones,” isolated communities around the world whose inhabitants live longer and healthier lives than the greater populace.

In the Greek blue zone, the island of Ikaria, inhabitants are more than 4 times more likely to live to age 90 than Americans are—yet there is virtually no health care infrastructure. Georgiou tells us: “There are no hospitals or major surgery capabilities…. People needing emergency care are transported by helicopter to Samos (a neighboring island), and all elective surgery is done in Athens.”

A procedure like an arthroscopy or a hysterectomy that would take 3-5 days in the U.S. consumes 3-5 weeks for Ikarians, who must relocate to Athens for the procedure and convalescence. Therefore, “their threshold for elective surgery is significantly higher than ours,” Georgiou says. The result is that people depend on themselves rather than doctors for non-life threatening ailments. And, knowing that health care is so inconvenient, Ikarians take greater care not to get sick—they eat a healthy diet rich in vegetables and exercise daily.

Our greater access to health care (discounting, of course, the millions of uninsured Americans) might make us more likely to live unhealthfully. “U.S. culture is steeped with a ‘find it and fix it’ mentality,” Georgiou tells us. Rather than try to prevent illnesses, we rely on our doctor’s ability to fix what ails us. And the result is that “we spend significantly more on health care than any other nation but without the benefit of improved outcomes or longevity.” In the U.S., our life expectancy is only 78, yet we spend 2.5 times more money per capita than Japan, the country with the highest life expectancy (82.6 years). One-half to one-third of the $2.2 trillion per year America spends on health care is simply unnecessary, says former AMA chairman Raymond Scalettar.

Our reliance on doctors may be tied to our faith, Georgiou believes. According to the World Values Survey, the U.S. ranks high on the traditional versus secular-rational values scale (in between Ireland and Northern Ireland). “Our nation’s traditional values make us more religious, more deferential to authority, more paternalistic,” she says. In other words, the impulse that causes us to listen to our pastors is the same one that makes us heed our physicians. “As a result, Americans have abdicated personal responsibility and delegated the responsibility for their health to their doctor and to the health care system. We don’t ask questions, we just do what the doctor says.”

Takeaway

One in every twenty patients contract potentially fatal infections in hospitals. In 2002 there were nearly 38 million hospital visits in the U.S., placing the number of hospital-acquired infections around 1.9 million per year. Weaning ourselves off our health care addiction would not only help reduce this number but also help rein in the nation’s ballooning health care costs.

Why We Should Reject This

What is true on the tiny island of Ikaria, might not hold true in a country as big and diverse as the U.S. Dr. Steven Schroeder, a professor of health and health care at UCSF, says that poverty, rather than a over-reliance on doctors, is to blame for our poor showing in global health comparisons. Poor Americans are four times more likely to die an early death than the rich. It is safe to assume that many of these poor are among the 45 million uninsured in our country, meaning that their access to health care, like the Ikarians, is restricted to emergency room care (the most expensive kind of health care). To be sure, other behavioral aspects of their lives might be to blame for their lower life expectancy, but over-reliance on doctors is surely not the cause. 

And while it may be true that Americans generally should lead healthier lives, studies have shown that regularly visiting the doctor is a potent weapon against the second leading cause of death in the United States: cancer. Cancer screenings can catch the disease in its early stages, increasing a patient’s likelihood of long-term survival. And people who have routine check ups are more likely to undergo these screenings. According to the American Cancer Society, campaigns to increase usage of Pap testing and mammography have contributed to a 70% decrease in cervical cancer incidence rates since the introduction of the Pap test in the 1950s as well as a steady decline in breast cancer mortality rates since 1990. But more can still be done: the National Cancer Institute says that of the estimated 569,490 who will die of cancer in the U.S. in 2010, as much as 35% of these premature deaths could have been avoided through screening. 

More Resources

— “Is U.S. Health Really the Best in the World [PDF],” a 2000 study published by Barbara Starfield in the Journal of the American Medical Association

— “The Impact of Hospital-Acquired Bloodstream Infections [PDF],” a study published in the Emerging Infectious Disease Journal in 2001

Related posts:

1. Why Is It Taboo For Doctors To Discuss Death With Patients?
2. Life in the Trenches of Health Insurance Business: How to Make Sure Your Surgery will be Covered
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Next, the students listened to a financial expert who told them what they should do.  A second brain scan showed that the students’ brain activity had virtually ceased.  The lesson?  When we listen to experts, our brains shut down.      

When I heard about this study, I couldn’t resist applying the findings to how people make decisions about their health care.  Advertisements on television urge viewers, “Ask your doctor.”  In other words, don’t think for yourself.  Suspend your own thought process and do what someone advises you to do, even if it means you will be exposed to significant risks that are often glossed over.  

For optimal health, we can’t delegate the management of our health, or our health care, to someone else.  We need to own it.  This requires a shift from the notion of consent to informed choice. 

Here are 10 questions to help re-engage our brains in health care decisions.  Call it a Checklist Manifesto for Informed Choice:

1.           What is the procedure or test?
2.           What is the purpose of it? 
3.           What happens if I don’t have it or do “watchful waiting?”
4.           What are treatment options for the condition I have??  
5.           What are the risks and benefits of these options?
6.           What do the risks and benefits mean for me and my life?
7.           Do the risks exceed the benefits? 
8.           If surgery is being considered, how many of the surgeries has the doctor performed?
9.           Who will perform the surgery?  Will residents, or doctors-in-training, be involved?
10.           How many of these procedures have been done at the hospital where it will be performed?

There’s an added bonus to being fully informed.  Research shows that when people have their brains turned on and are engaged in making decisions about their health and health care, they use less intensive and costly approaches to treating their condition.  That can only be good for one’s health – and pocketbook.

No related posts.

I say “once upon a time” because today, that scenario is mostly a fantasy.  And sadly, today’s story doesn’t always end with happily-ever-after – for anyone.

Providers went to medical school to learn to heal and help. Instead they carry excessive patient loads amidst decreasing reimbursements, spend a small fortune on malpractice insurance, and reject some patients who don’t have the right kinds of payers, or who take up too much time with difficult diseases or comorbidities. They are frustrated with their inability to deliver the care they prefer to deliver, but they must protect themselves or they will lose their practices.

Since the passage of reform, insurers have been forced to realign their requirements and services so they can continue to suck money from employers, patients, providers and the government. They spend billions on lobbying efforts, and reduce their provider reimbursements – at the expense of patients who are continually denied the care they need. A million families go bankrupt each year because they erroneously believed their insurance would cover their care when they needed it.

Those patients, accustomed to provider paternalism and decent payment coverage, find themselves blindsided to this devolved system that no longer provides the care they need and deserve. They get sicker. They die from medical errors. They lose their homes. No one has ever even suggested, much less taught them how to stick up for themselves or take responsibility for their own medical decision-making.

Patient Advocates to the rescue! Patient advocates are the only participants in the healthcare equation who may deliver improved outcomes for everyone  – providers, payers and most of all –patients.

When an advocate accompanies a patient to an appointment, less time may be required because the advocate will facilitate communication and the process. In a hospital setting, a bedside advocate will double check drug dosing and insist on hand washing, keeping the patient safe and providers out of hot water.

Payers benefit from the efforts of patient advocates, too.  Advocates help patients understand when a generic drug makes sense, or question a diagnosis before the wrong treatment is dispensed or performed, and therefore must be reimbursed. A billing or claims advocate knows how to file paperwork correctly, or reduce a hospital bill, saving time and expense for payers and patients.

Of course, advocates provide the biggest benefits to us patients. We can rely on our advocates to be focused on our improved outcomes and well-being.  Just like – once upon a time — we relied on our doctors.

Talk about disruptive! Rare is the case that an extra person in any relationship can improve the outcomes for everyone involved. 

But this is no fantasy. Patient advocates are skilled and ready to help.  Including an advocate in the medical care delivery equation can help us refocus on the possibilities of the good care that providers wish to deliver, payers are willing to pay for, and patients deserve to get.

Related posts:

1. The Ethics of Patient Advocacy
2. On the Meaning of Patient Advocacy
3. Calling Patient Advocates–Share Your Story

Most likely you will know someone who has been diagnosed with cancer: family, friend or yourself. It can be a daunting task to understand recommended treatments and what those treatments may mean in terms of preventing a recurrence of cancer or a cure. For example, the media reports a 50% increase in survivorship. Pretty impressive and sounds like the latest miracle drug. However, when evaluating a treatment you should ask if the percentages you are being provided are the relative risk reduction or the absolute risk reduction percentages so that a fully informed decision can be made. In one study, 56.8% of patients chose the medication whose benefit was presented in relative terms and 14.7% chose the medication whose benefit was in absolute terms.*   The patients in this study thought that the true benefit was much greater than it actually was when relying on the relative risk.

Here is an example of relative versus absolute risk reduction:

100 women took ABC pill and 100 women took a placebo, which is not an actual medication. Of the 100 women who took ABC pill, 2 developed cancer and of the 100 women in the placebo group, 4 got cancer. It is reported that this clinical trial showed a 50% reduction in cancer and another report states that the same clinical trial showed a 2% decrease in cancer. Both percentages are accurate and that is because the data are being reported in two different ways.

The 50% reduction was reported using relative risk reduction. The 2% decrease was reported using absolute risk reduction. It is extremely important that you understand the difference between the two when making decisions about your care.

In the relative risk reduction report, 2 women who took the ABC pill out of 100 developed cancer and 4 women out of 100 who took the placebo got cancer. Two cancers in the ABC group are half as many as the four in the placebo group.

Thus the 50% increase in survivorship or calculate 2%/4% = 50%.

To calculate the absolute risk percentage, do the following calculation:

4% (placebo) – 2% (ABC pill) = 2% absolute difference.

Here are some other examples that should make the difference between absolute versus relative risk reduction even more clear.   

So when presented with options for chemotherapy or any treatment, make sure you ask your healthcare provider to give you the relative and the absolute risk reduction percentages. For the absolute risk reduction number, just ask your healthcare provider, “What is the actual number of patients out of 100 who benefited from the treatment?”

If your provider cannot answer that question, then ask that she or he find out for you. To be a savvy health advocate you must become statistically literate, and understanding the difference between relative risk versus absolute risk reduction moves you towards the head of the class.

To learn more about health statistics consider reading Know Your Chances: Understanding Health Statistics  by Steven Woloshin M.D.M.S.,Lisa M. Schwartz M.D.M.S., and H. Gilbert Welch M.D. M.P.H.

*Malenka DJ, Baron JA, Johansen S, Wahrenberger JW, Ross JM. The Framing Effect of Relative and Absolute Risk. J Gen Intern Med. 1993 Oct;8(10):543-8.

Related posts:

1. Savvy Health Advocate: Patient Safety Is All About You
2. Transitional Care: A Way to Save $18 Billion – and Improve Health Outcomes
3. Life in the Trenches of Health Insurance Business: How to Make Sure Your Surgery will be Covered

Our series on Patient Advocacy kicks off with today’s post.  Over the next week, we will hear from a variety of women about their personal journeys and professional experiences.  Early in September we will compile these posts, along with our August Man of the Month’s and blog talk radio interviews, into an e-book.  As always, we look forward to your comments.

By Stephanie Mensh. When my husband, Paul Berger suffered his stroke, we were both in our 30′s, established in our careers, and planning for the future. We wanted to continue our active lifestyle, which meant overcoming Paul’s disabilities and pulling services out of many different organizations, each with their own roadblocks. I became Paul’s advocate. Here are my tips for successful advocacy to get what your survivor needs from the system.

There are three types of advocacy: (1) personal advocacy by individuals, family members, friends or others to obtain benefits and services from public or private service providers; (2) legal advocacy by a lawyer to navigate legal processes; and (3) political or policy advocacy by lobbyists and concerned citizens to change government systems.

Personal Advocacy

Most caregivers learn to be personal advocates by “on-the-job” training, usually starting with hospital, medical, and therapy providers, then health insurance. Here are some tips to help you improve your personal advocacy:

• Make a written list of your needs and questions, and go after the most important first.
• Research as much as possible from insurance policies, medical brochures, treatment plans, and other sources.
• Talk to other caregivers and ask for advice, especially for the names and phone numbers and emails of people who were helpful to them.
• Call and ask for the person or department that specifically handles the services or questions you need answered. Ask for the exact spelling of that person’s name.
• Write down the date, time, person’s name, and topic discussed in any phone calls. Keep this in a file with your other materials and research.
• Be persistent. This may mean calling every day. This may also mean asking another family member or friend to call on your behalf.
• If you feel that your questions are not being answered, or you are not getting the appropriate services, find an outside professional, agency or organization that can intervene on your behalf.

Legal Advocacy

Sometimes the only way to get the services or resources you need is by taking legal action with the help of a lawyer.

Legal advocacy does not necessarily mean going to court. Most often, a lawyer can advocate for you through telephone calls and correspondence. Most legal actions relate to contract or financial problems, such as insurance companies paying claims, enforcing federal protections regarding employer’s sick leave/family leave  policies, or negotiating with creditors to prevent foreclosure or bankruptcy.  If you have been denied social security disability or other benefits, an attorney can file an appeal.

When Paul had his stroke, we decided to refinance the mortgage on our house. Our lawyer prepared a specific “power of attorney” so I could attend settlement alone, since Paul was too ill to leave the hospital.

Attorneys specialize in different areas.  Look for one who specializes in your particular problem. Ask your family lawyer to refer you to a specialist, or contact the local bar association, or local legal aid organization. The American Bar Association has online referral links: http://www.abanet.org/legalservices/findlegalhelp/home.cfm

Don’t wait for a family crisis.  It is never too early to have a will, a power of attorney for financial/business affairs, and a power for health matters, as well as a living will that will provide instructions on life support if you become critically ill. 

Political Advocacy

Finding services for stroke survivors can be challenging, especially once the “acute” phase – the immediate hospitalization – has passed, since the types and costs of available services vary so much from one area to another.  Speech and physical therapy are often limited, and vocational rehabilitation services and related case management may have waiting lists.

When you need services that are not provided in your area, you may need to change the system — by translating your personal advocacy skills and passion into political or policy advocacy.

You can start by writing letters or emails, and visiting your elected officials or their staff. Your local city, county and state officials want your vote in November — so do your US Congressman and Senators.  They want to hear your concerns and find ways to help. You can do this on your own, with your survivor/family member, and/or with other caregivers and survivors.

The first step is to learn about your elected officials — who they are, where their offices are located, how to contact them, and details of their policy interests. For example, learn what committees they serve on, and what bills they have drafted, supported, and voted for.  Most have web sites with this information, and their offices will answer questions and mail you additional material.  For the US Congress, http://www.gpoaccess.gov/ . 

My volunteer efforts led me to an appointed position on the local citizen advisory committee that oversees the county’s human services programs.  I have a voice to support programs for people with disabilities, which has become crucial during these times of state and local government cut-backs.

On the state and national level, Paul and I participate in the American Heart-American Stroke Association’s Lobby Day in Washington, DC, and continue our advocacy from home as part of the AHA/ASA’s  “You’re the Cure” grassroots network — an easy way to stay informed on state and national issues. To join, visit: http://www.americanheart.org

Related posts:

1. May is Stroke Awareness Month & Congress in High Gear on HHS Appropriations
2. Calling all Patient Advocates
3. October Man of the Month – Paul Berger

Reforming hospitals with IT investment in the McKinsey Quarterly talks about the American Reinvestment and Recovery Act’s (ARRA) $20+ billion worth of stimulus funding under the HITECH Act and estimates that 80% of existing hospital IT applications will be affected by the regulation. Hospitals will be spending about $120 billion to meet the adoption and meaningful use provisions of the Act. This equates to $80,000 to $100,000 per hospital bed. ARRA incentive payments will cover roughly 20% of this cash outlay, meaning that $60-80K won’t to covered.

But McKinsey says, “Hold on!” There are ways to recoup the spending gap between HITECH incentives and cash-out-of-the-hospitals-budget. McKinsey’s research calculates that optimizing labor, reducing adverse drug events and duplicate tests, and adopting revenue cycle management can help the average hospital save $25,000 to $44,000 per bed each year. That gets to the $40 billion in annual savings when multiplied across all hospital beds in the U.S.

In operational terms, the savings accrue through:

• Managing inpatient beds more efficiently using equipment-scheduling software
• Optimizing the use of clinical equipment
• Determining optimal staffing
• Reducing administrative waste
• Reducing adverse drug reactions through computerized-physician-order-entry (CPOE) which cost $8,000 to $15,000 per bed each year (up to $3 million for a 200 bed hospital)
• Managing the revenue cycle by billing unbilled services, equivalent to 0.4% of hospital services, or $4,000 per bed.

Jane’s Hot Points: The McKinsey team rightly points to three critical success factors for maximzing health IT investments that the most wired, effective hospital-adopters have learned: get critical buy-in among clinicians and hospital execs early in the HIT adoption process; ‘radically’ simplify health IT architecture; and, elegantly plan and execute.

It’s the implementation phase in health IT adoption that so often gets short-shrift. McKinsey notes that Canada’s hospital system devoted 30% of its entire budget to change management. That’s a big number, but it’s also where rubber meets road: a capital outlay of $N million is the easy part of HIT adoption. The follow-on implementation resources, both in terms of sheer dollar volume and labor/staffing, along with disruption of clinical workflow, is the hard part. But getting to meaningful use will require no small amount of implementation effort in the form of evangelism, education and training, and ongoing assistance and support.

Originally posted on The Health Care Blog on August 18th.

Related posts:

1. Transitional Care: A Way to Save $18 Billion – and Improve Health Outcomes
2. Blog Roundup: Health IT, Urgency, practicality, and costs of health care reform
3. Remote Health Monitoring: Using Communications Technology to Deliver Health Care Services

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3. Who will be most disruptive in 2009?

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This office was the shared space for Clinovations and Osmosis. The wonderful folks at Clinovations had suggested placing one of my paintings in their space to brighten up the blank white walls. Perhaps one of my paintings would support an even greater awareness of the need for patient-centered care. I thought, why stop with one painting why not many? Why not have an entire show and invite people from every facet of health care and beyond? I wanted to create a space for conversation and networking. I wanted people to get together and have some face time surrounded by art.

I envisioned a crowd of people thinking of ways to provide better care for patients everywhere. As I thought about this, I realized that this concept would be the focal piece of the show. Give Us Our Dammed Data is my first crowd-sourced painting, and it features quite a crowd. I wanted to paint a citizen army of patient advocate authors. I knew quite a few from Facebook and Twitter and had read their work. So I asked for suggestions from Dave DeBronkart, Trisha Torrey, Lisa Lindell and Helen Haskell. Between the five us we created a list of potential authors. Helen suggested I contact all of them and ask their permission to include them in the painting. With her help I found their addresses. I really enjoyed the give and take of emailing each author. I explained I wanted to paint them and their books.

And so another crowd gathered in Georgetown on Thursday night. They did not move or laugh. They did not drink wine or nibble the delicate appetizers. Instead, they stared down upon us with sorrowful smiles. In a room usually filled with laptop computers and hushed conversation hung a large painting picturing a crowd of authors. These authors’ books span 15 years, and all of them are telling a very similar tale.

17 authors with weapons in hand stare down upon the viewer. The three panel painting measures 60 inches by 144 inches. It is a very large painting, and yet it is crowded with many who have been hurt and many who have suffered. Every one of them is an author. Most of the authors in the painting took the hurt and outrage they felt about a dysfunctional medical system and channeled that into a book. That book is their shield and their pen is a spear.

These are people who have taken up arms in a battle they had never intended to fight. Note they are dressed only loose robes or hospital gowns. Their feet are bare. They dress as the supplicant or the pilgrim. They are on a mission. For some of the citizen soldiers it has been a very long path.

Journalist Michael Millenson’s Demanding Medical Excellence was published in 1997, and as you read it it is hard to comprehend it was written 13 years ago. It reads like it was written yesterday. So in the far left panel Michael’s back faces the viewer in the piece. The public has not been listening. He is turned toward a fellow advocate who will spread the word. He is speaking to Julia A. Hallisy who looks concerned. And so she should.

This is Julia A. Hallisy, whose daughter, Kate, fought a losing battle with cancer in her short life. In 1997, Julia was well aware of the failings in our health system as she desperately tried to get an oxygen machine so her ten-year-old would be able to breathe as cancer was attacking her brain.

On the right side of Michael stands Janet Lynn Mitchell. In her book Taking a Stand she recounts her battle to walk after enduring 10 knee surgeries. Her many surgeries were due to a mistake during her original surgery. This was covered up and parts of the medical record were altered and “lost.”

Below Janet sits Martine Ehrenclou, author of Critical Conditions. Martine spent over a year guiding both her mother and godmother through medical wilderness. She saw so many hazards and “never events.” She was determined to create a book to help others survive their hospital stay.

To Martine’s left sits Evelyn V. McKnight, author of A Never Event. Evelyn contracted hepatitis along with 857 other cancer patients due to reused contaminated syringes.

Beside Evelyn sits Elizabeth Cohen, Senior Medical Correspondent with CNN. She will soon publish The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. She has used her years as a patient and a patient advocate for her family members to help others. Informed by years of reporting medical tragedies as a reporter, she too felt she must write a book.

In the far right panel on the lower right side sits Sorrel King. Hers is one of the sadder stories in this piece. She alone stares out of the frame and seems to make eye contact with someone who must be quite small…. Sorrel lost her daughter Josie. Josie was only 18 months old. Josie was recovering from a bad burn when she died from severe dehydration and unfortunate dose of narcotics. Sorrel knows intimately the importance of patient and caregiver access to medical record. Being able to read the orders in a record can save a life.

Seated behind Sorrel to the left is Lisa Lindell. Lisa wrote 108 Days. In her book she tells a day-to-day account of her successful campaign to keep her husband alive. She was astounded when she read her husband’s medical record. The nurse’s notes specified that she had an “unreasonable” belief that her husband should live. Beside Lisa sits Patrick Malone a malpractice attorney and patient rights activist, who wrote The Life You Save. Patrick lists nine necessary steps to getting the most out of the current medical system. The number one step is: Get a copy of your medical record.

Behind Patrick to his left stands Jari Holland Buck. She wrote Hospital Stay Handbook. She would understand the frustration of Lisa Lindell, as she too, kept her husband alive during his hospital stay.

Beside Jari stands Margo Corbett, the author of The Savvy Patient Toolkit. She became inspired to advocate after she was told her husband may not survive the night. She used all of her talent and past job experiences to create a handy checklist for patient care.

To Margo’s Left stands Carolyn Oliver,MD, who wrote Cautious Care: A Guide to Patients. This was the first patient empowerment book I ever read. Fred Trotter gave me a copy after I asked an access question before the crowd at Connect 2009 in DC. I loved it its simple and clear instructions.

Next in line is Sanjaya Kumar, MD author of Fatal Care. Dr. Kumar is dedicated to the improvement of patient safety and real time collection of data.In the center panel to left stands John James. He lost his son Alex at the age of 19. John was astounded when he read Alex’s medical record. He saw so many mistakes and examples of miscommunication that led to Alex’s death.

To John’s right stands Sandra Gilbert author of Wrongful Death. Her husband died during routine surgery. Her story recounts her efforts to grieve while trying to find out what exactly had happened.

In the center stand the ones who lived. Dave Debronkart author of Laugh, Sing and Eat Like a Pig and Trisha Torrey author of You bet your life, The 10 Mistakes Every Patient Makes complete our 17. They had a very different experience. They got access to their medical records; they fought the system and won. The title of the piece is a play on the words Dave spoke: “Gimme my damned data.” His phrase described the anger and frustration of all of us who have suffered so in a system where a patient sees a record only as an afterthought. I decided to expand on his comment and add an actual dam.

So in the middle of this painting stands a version of Hoover Dam labeled Meaning Use, HITECH. The data may still be dammed, but now it has begun to flow and it is pouring right into a laptop computer. We may have to wait three days, but due to government action, we will get access to our records.

This has been a long post. I may have lost some of you in listing all of the advocate authors. I hope you are still reading for there are two others in this picture.

To the far left stands Clay Shirky author of Cognitive Surplus, and to the right is Melinda Blau, author of Consequential Strangers. They are feeding the pack mules.

Every army must have pack mules. They supply the troops; they carry the supplies and are sure-footed on the mountainous path. If you haven’t read the books I would recommend them to be read together. Melinda reminds us of the power of all the people in our life. It is the friend’s friend who often gets us the job or finds us the right doctor. Clay Shirky informs us of the inherent potential in a world where thousands of people log on and data crunch with no other goal than doing good for others. He sees the future of medicine when it combines with the data aggregation of sites such as Patients Like Me.

So this is the story of Give Us Our Dammed Data. It is a painting that had 17 advocate authors. I could have painted more. I could have covered every wall in the Clinovations office space with advocates who are fighting for us. I stopped with 17.

Why? There are 17 people in 73 Cents. There are 17 pills in another piece at this exhibit, Sutent in a Shadow Box.

And I took up my shield and sword on June 17th 2009. My shield is a canvas and my sword is a paintbrush. I am so glad my art can create a space where these authors can look upon us as the mighty army they are. I am in awe of the work they have done. I hope you will feel the same.

Related posts:

1. Why I Didn’t Sign the Declaration of Health Data Rights – Yet…
2. Calling Patient Advocates–Share Your Story
3. Patient Advocacy – When Disruption Creates Win Win Win

Well, sort of. . .

My family and I recently returned from a month long trip to Greece. Indeed, it was glorious, and it would be fun to write about the exquisite meals, the inspiring history, and the experience of “moving in” to Lahania, the small village (population: 50) where my father was born. But, that’s not what I’m writing about because, frankly,  I expected that we would have a wonderful vacation. What I wasn’t expecting is that I would get an insider’s view of the Greek economic crisis.

It started the moment we arrived. The plan for our first full day in Athens was to visit the New Acropolis Museum that opened to rave reviews in  2009. It cost $200 million and sits near the base of the Acropolis with a direct view of the Parthenon. BUT….we were promptly informed that the museum was closed. In fact, all of the historical sites were closed due to a 1-day national strike. Two and half million public and private sector workers in Greece were on strike in Athens and other major cities protesting the European Union-International Monetary Fund austerity measures.  This particular strike was scheduled on the same day that the Parliament was voting on a bill to increase the retirement age to 65 and decrease early pensions for workers. FYI…the Greek government has policies that promise early retirement (age 50 for women and 55 for men) to 700,000 people. Warning: Don’t get in between a Greek and their “syntaxi”—their retirement check.

No problem…we decided to spend the day in Varkiza, one of the lovely beaches just outside of the city.
Interestingly, despite the palpable anger and frustration (with their own government, not the EU or IMF), we didn’t see any picket lines or strikers. The beach, however, was packed with locals who were thrilled to have a day off. Little did we know that this was the 5th national strike since February with the sixth strike scheduled for July 25.

Over the course of the next four weeks, we had many conversations about the financial crisis, and there were two consistent themes regarding the root cause: overspending and fraud.

Overspending

There are many reports that suggest that the 2004 Olympic Games put the country into a downward spiral, and this issue came up frequently in our discussions. Costing $11 billion dollars, in addition to infrastructure costs, this was 50% over budget and clearly more than the country could afford.  In our conversations, however, the prevailing perspective was that it was the government’s fault.

Maybe so, but there is a long history of overspending, in the form of entitlements, that the country cannot afford to continue but, yet, the people don’t want to give up.   Did you know:

• As a way to stimulate population growth, women who have three or more more children are given a lifetime stipend. One family that we were with has four sons. All are adults, and the mother continues to receives 200 euros per month…forever.
• As a way to stimulate tourism, the government established incentives for entrepreneurs to build hotels and open restaurants. And, what a deal! The government gifted–yes, paid for…60% of the development costs for new projects. This helps explains why the islands are lined with large, luxurious hotels with a 57% average hotel occupancy rate.  
• All employees receive two  bonuses a year: a Christmas bonus equal to  one month of salary and an Easter bonus equal to two weeks of salary. So, employers are obligated to pay 13.5 months of wages for 12 months of work. Can anyone say pay for performance? Management discretion? Nah..

Fraud

The common enemy among those we spoke to is the 2004-2009 government led by Kostas Karamanlis. “They stole our money! Why should we suffer as a result of those criminals?”

Agree. Many articles describe Karamanlis’ reign as corrupt and scandalous with fraudulent financial practices. But, fraud is not limited to the government. Greece has a well-known, long history of tax evasion that costs the country $20.5 billion per year.

While I was well aware of the tax evasion,  I didn’t realize how much fraud is woven into the country’s culture. Defrauding “the system” is not considered unethical, it’s how they win. They don’t hide it. Rather they brag about it–because it’s the norm.  We heard several examples that simply made us cringe:

• In casual conversation, one gentleman was telling us about his fifteen day hospital stay; the doctor submitted a bill for thirty. One of long time friends, a US citizen, didn’t have insurance in Greece but needed Lovenox, an expensive medication to prevent blood clots. She had a doctor write the prescription for her mother, a Greek citizen, who was insured by the national plan.  An economist and health care broker estimated that 10% of health care costs are fraudulent. 
• Business going under? Set it on fire and start over. Arson drives about 20% of fire insurance claims.
• It was recently discovered that on top of the 2.6 million people getting a retirement check, there are an additional 160,000 people are on the pension rolls. Here’s the problem: they are dead and their families are still cashing the checks.

As a Greek, I deeply disappointed. As a US citizen, I am deeply concerned because it seems that the EU-IMF’s rescue loan will only have a sustainable impact if the country’s values are re-wired to include personal accountability and integrity. However, in my opinion, the prognosis is dim and, according to Alberto Alesina, a professor of political economy at Harvard, “…what matters is (the) family….there is less of a sense of duty towards the state.” (WSJ, 2/10/1010).  In other words, less money in the government’s pocket means more money in the family’s pocket. And, that’s what matters most. 

The Greeks’ unflappable commitment to their families is both their greatest strength and their greatest weakness. Extended families frequently live within steps of each other and eat two meals together…every day. Young adults enjoy spending time with their parents and live at home until they are married.  The elderly are included as an important member of the family, and placement of seniors in nursing homes is the exception rather than the rule. It is well known that family connectivity, meaningful conversation, and interacting with people who make us feel loved and appreciated is a key component of longevity.  The life expectancy in Greece is 79.8 years versus 78.2 years in the US.

So, what’s the bottom line? Take a trip to Greece. Eat a Mediterranean diet. Get up and dance on the tables. Drink ouzo. Take a nap. Watch very carefully how families interact.

Then,  come home to the good ‘ol USA and incorporate the good that you’ve learned into your life.

Create Health, 
Archelle

Orignally posted on Archelle on Health on August 11th.

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Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0

Richard Davies deBronkart Jr , known by many as e-Patient Dave, is a cancer patient and blogger who, in 2009, became a noted activist for health care transformation through participatory medicine and personal health data rights.  In 2010, he became a published author and Disruptive Women in Health Care’s August Man of the Month.

I was a middle-aged guy going through life, as involved with my own health care as I was with my car’s carburetor, which is to say, virtually not at all.  And then I found out I was almost dead.

That’s how my interview with Dave started. 

Dave was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in his lungs, bones, and muscle tissue, his prognosis was dire.  Now, almost four years later, e-Patient Dave has emerged as a patient advocate, with a self-described calling to connect, engage, and empower patients.

Dave had been proactive for years when it came to choosing providers he liked, so when it came to crunch time, he  was fortunate on several levels: he received excellent treatment at Boston’s Beth Israel Deaconess Medical Center; his physician, Dr. Danny Sands, who in addition to serving as Dave’s primary care doc since 2003, also serves as the Senior Medical Informatics Director at Cisco and as such is on the bleeding edge of online communications and health information technology; and, the Biologic Therapy program helped Dave participate in a clinical trial for the powerful High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.

Technology and Patient Advocacy:  An Author is Born

Dave observed that many patient advocates come to patient advocacy because they were injured, or had a negative experience with the health care system.  This was not the case for Dave.  He had a life altering experience; a near fatal disease that rather than kill him, turned his life in a different direction.

Before his diagnosis, Dave was a savvy online guy. “I’ve been online since 1989, heck I even met my wife online.  So it’s no surprise that I ended up with a cutting edge academic medical center and physician.”

While the health professionals, life saving medicines and medical technologies were key to his survival, so too was the Internet—it became another of Dave’s lifelines:

• Dave was able to communicate with his primary care physician by email and his hospital was committed to making information available electronically;
• Dave used the web to access information about his disease;
• He joined the Association of Cancer Online Resources, an expert patient community; and
• A participant in online communities before his illness, Dave quickly figured out that using online technology to update his friends and family not only provided an efficient means to communicate what was happening and how he was doing, but it connected him to a great number of people who cared about him, supported him, were there for him.  He started an online journal and support community on CaringBridge.

Many people suggested to Dave that he should write a book about his incredible journey.  But one man, Dave’s friend George Alexander, presented Dave with a tremendous gift:  he took Dave’s online journal and blogs, the essence of everything Dave had been through as well as the lessons learned, and through his Changing Outlook Press, worked with Dave to publish Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and What Healthcare Can Learn From It).  

The book, available on Amazon, pulls you in.  I couldn’t stop reading it.  Dave and I are Facebook friends, he follows Disruptive Women on Twitter, and I was very aware of his contributions to patient advocacy.  But it wasn’t until I sat down with the book and started at the beginning that I realized the phenomenal power of Dave and his work. 

The book is not only a page turning chronology of Dave’s story, but it contains very useful information: lessons in patient empowerment, thoughts on statistics and medical evidence, e-Patient white paper chapter summaries, and finding online support groups.  Not to mention it has introductory essays by two previous Disruptive Women in Health Care Men of the Month: Matthew Holt and Paul Levy.

E-Patients and Participatory Medicine:  An Advocate is Born

As Dave was no stranger to the online world and blogging prior to falling ill, he was invited by his primary care physician, (one year after his diagnosis) to join the annual retreat of the e-Patient Scholars Working Group, founded by the late Tom Ferguson MD (to whom Dave’s book is dedicated). “My mind just exploded.  That was January 2008, one year after my diagnosis.  I couldn’t stop reading everything on the epatients.net site – how e-patients can help us ‘heal’ health care – and I renamed my blog.  Good-bye Patient Dave, Hello e-Patient Dave.”

e-Patients: How They Can Help Us Heal Healthcare 

Since that time, e-Patient Dave has been very involved with the e-Patient and Participatory Medicine movement and is currently on the Board (a founding co-chair) of the Society for Participatory Medicine, a 501(c)3 public charity, which “aims to advance the understanding of physicians and other professionals in the importance of well-informed, empowered and engaged patients making informed decisions about their care and treatment.”  

As the Society’s website says:

Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

Today he’s applying his previous career experience, in marketing and public speaking, to evangelizing patient engagement. A keynote speaker who often leaves jaws dropping, he received an audience rating of 4.9 out of 5 at this year’s ICSI / IHI Colloquium. His busy fall schedule is at www.ePatientDave.com/schedule and videos of past talks can be seen at www.ePatientDave.com/speaking.

Dave reiterated to me that on-line access gets him access to information but doesn’t make him an oncologist.  But it does help him be an active participant in his care.

I asked him what advice he would like to share with other patients.  Here are some highlights:

• Empowerment is not just about using the Internet—speak up for what you want
• Trust Yourself – you can help far more than you might imagine—get engaged
• It’s absolutely vital for people to actively check and follow up with their health care professionals—to obtain lab results and other critical information

“Some day our medical system might be absolutely reliable to do everything right – until then, it behooves us all to be actively involved in our care….Patients can help—more than they realize.”

Related posts:

1. August Man of The Month – Dr. Steven Wartman
2. June 2010 Man of the Month: Paul F. Levy
3. March 2010 Man of the Month: Brian Rosenfeld, MD