Guest blog by Beth Boynton, RN, MS

Before trying to answer this question I need to differentiate between my use of the terms ‘consumer’ and ‘patient’.  I’d like to use the term ‘consumer’ to include all of us who may receive health care service and ‘patient’ to include those who are actively being treated at any given moment.  The need to make this distinction will become clearer as we consider the topic.

It seems obvious that collaboration between healthcare professionals, consumers, and patients is our best hope for fixing problems like making care safer, kinder, and more cost-effective. Yet in order for this to happen, healthcare professionals must try to understand what patients need and want in terms of their care so that we can provide the best care, patients should speak up as best they can to tell us, and consumers need to understand as much as they can about how our healthcare system works (or doesn’t work) so that efforts to change will be based on solid ground.  

While patient-centered care is an approach that is helping gear clinicians to listen to, respect, and empower patients, I wonder how we might reach out to consumers to invite them to learn more about the work that nurses, doctors, and other healthcare professionals do, how it affects us, and consider how they might be supportive. Empathy for healthcare providers seems important in the pursuit of collaborative care and the dismantling of the old ‘us and them’ paradigm.  

Yet, there is a big caveat to this and it presents a paradox that leads me to write and hopefully inspire discussion about it. When consumers are patients it is the job of healthcare professionals to take care of them.  Not the other way around.  There is an inherent dependency involved in the relationship and it does not seem right for nurses and doctors to expect patients and families to be empathic about their challenges when patients are sick and/or vulnerable.  On the other hand, not making room for empathy may interfere with truth finding and problem-solving that we could be working on together.  

For example, healthcare employers often tell nurses via customer service training that they should never tell patients that the organization is short-staffed.  Nurses are running around from urgent task to urgent task.  Patients and families have reasonable requests and sometimes urgent needs that go unattended for too long. Instead of providing more staff there are memos to discourage overtime and care providers are given critical evaluations for lack of time management skills. Workarounds are never openly advised, but there is not enough time or staff to do things properly. Shortcuts become taboo to talk about, common, and unsafe. It is frustrating, sometimes extremely frustrating and I don’t know any colleagues who feel good about making patients wait for pain medication, leaving work for the next shift, or forgetting to give a critical antibiotic.  

I have two thoughts about this conundrum.  One is that patients and consumers deserve to know the truth.  This way they are empowered to help or get their care elsewhere. In fact, I’ve often thought that organizations facing budget constraints should work with a consumer group to come up with a plan of how family members,  volunteers, and even administrative leaders might help during a nurse staffing shortage. Nurse Assistant training is only 6-8 weeks and could be a prerequisite for working in a hospital or nursing home.  That way there would always be help available and things that get delayed would not include patient care. Alternatively, hospitals and nursing homes could just be honest. “We welcome you and there is a bed, but you should probably bring someone with you to help the nurses and nurse assistants because we had someone call in sick for duty.”

The other thought is that at some point consumers should know how such conditions affect the people they are entrusting their care to and the health care systems they depend on. Burnout, substance abuse, and even suicide are tragic and interrelated problems that healthcare professionals face. And maybe empathizing with the frustrated nurse or doctor isn’t appropriate when being cared for, but maybe simple efforts such as getting to know neighborhood nurses and doctors on a deeper level would help. Conversations outside the clinical environment between consumers and healthcare professionals that help discover emotional or physical stressors may create doors for authentic and co-creative problem solving might help.  

I don’t have an exact answer to this question about empathy, but I do believe that we all deserve and maybe even need it. Honesty should be a priority and seeking answers will somehow help us to move forward toward a collaborative vision of healthcare that is safer and more compassionate. What thoughts do you have?

Beth Boynton RN, MS is a national speaker, consultant, and the author of “Confident Voices:  The Nurses’ Guide to Improving Communication and Creating Positive Workplaces”.  She specializes in communication, collaboration, & emotional intelligence for healthcare professionals and organizations and is trained in the Professor Watson Curriculum for Medical Improv through Northwestern University Feinberg School of Medicine. Her video, “Interruption Awareness:  A Nursing Minute for Patient Safety” and blog, “Confident Voices in Healthcare” have drawn audiences from all over the world.  She is currently writing a core text on communication for nursing students with F.A. Davis Publishing Co which is tentatively scheduled for publication in the Spring of 2015.  Her complete CV is online. 

 

 

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As an avid reader of physicians’ memoirs, I dove into Sandeep Jauhar’s, Doctored: The Disillusionment of an American Physician, prepared for an unveiling of our dysfunctional health care system. I half expected to fall into a story about a physician who pursues his passion for practicing medicine in the face of overwhelming odds and surfaces as the victor. That isn’t what Doctored is about. It’s value lies in the author’s ability to let readers see behind the curtain of a physician’s life and pursuit of a profession that isn’t what it once was. Although not hopeful for physicians and patients alike, Doctored is a moving and well-written memoir that showcases the author’s struggle to practice medicine while confronting a number of personal and ethical challenges.

Because I’ve interviewed so many physicians for my books, The Take-Charge Patient and Critical Conditions, I understood the author’s exasperation with the time-crunch with patients, low reimbursements from health insurance, frustrations with health insurance denials, and massive amounts of paperwork. I’ve heard the same from almost all of the doctors I’ve spoken to.

As a cardiologist at a teaching hospital outside of Queens, Sandeep Jauhar struggles to earn an income to support a wife and growing family. He deals with unscrupulous doctors who over-test for profit and in the name of defensive medicine. He is a physician trying to do the right thing by his patients but at the same time earn enough money to put food on the table. Unlike many of his cohorts who take it for granted that prescribing unnecessary tests for unsuspecting patients is the only way to increase their incomes, Jauhar questions his journey as a cardiologist, challenges the idea of using patients to bilk health insurance companies.

However, Jauhar does in fact join the peccant group of physicians who compromise their integrity to make more money. What saves him from being an unlikeable narrator is his conscience, his discomfort with selling out.

Jauhar casts a dark shadow on many physicians, calling our attention to ulterior motives to boost referrals, another word for kickbacks from other doctors. He writes, “Referrals are also a way for cash-strapped doctors to generate business.” Giving an example of three physicians who all agree to call one another when an issue with a patient arises that is outside the scope of their expertise, he offers a clear picture of the dirty referral process. “It’s hard not to view a referral as an overture from another physician, and it is equally hard not to return the favor.”

Ever wonder about your doctor’s referral to a specialist? Read this book and you’ll find out information to consider.  

Jauhar is certainly caught in a bind, not unlike many other doctors who go into medicine because they want to care for patients, only to discover they can’t manage financially unless they make other choices. In conflict with the business of medicine, Jauhar reveals the underbelly of the physician population. He takes on work for cardiologists who perform needless stress tests for young patients, echocardiograms, and more.

His family pressures him to socialize with other doctors in effort to snare referrals. Jauhar is judged for resisting the doctor parties that lead to financial rewards, for not wanting to use tried and true strategies for manipulating others for gain. Contrary to his integrity, he does it anyway.

Throughout Doctored we are privy to interesting patient stories to illustrate ethical challenges faced by Jauhar. There are morality tales in the cardiac wing of the hospital, in treating end-of life patients whose families want them to survive no matter what, in sending patients to specialist after specialist in effort to find an accurate diagnosis for what ails them.  

Jauhar’s doubts bleed into the competency of other physicians and their ability to accurately diagnose. His own father suffered with chronic headaches. After a slew of prescribed drugs, from muscle relaxers and antidepressants to prednisone, his father then submitted to a battery of tests requiring a hospital stay. Those tests turned up very little in the way of a diagnosis. His father was seen by an array of specialists but “no one could tell him what was wrong.” Even when his father’s doctor did show up to see him in the hospital, Jauhar writes, “she spent no more than a couple of minutes with my father then rushed off.”

All of us patients can relate to that.

Jauhar’s father eventually stopped the medications on his own and after two weeks the headaches disappeared. So much for modern medicine.

When Jauhar’s wife, Sonia, was pregnant with their second child, the chief of obstetrics at Cleveland Clinic performed a fetal ultrasound. They were told the baby was a girl. That opinion turned out to be wrong. They were having a boy, a fact conveyed by a Rastafarian man on a beach in Anguilla where Jauhar and his wife had vacationed previous to the ultrasound. The significance of this portrayal is greater than one might think. It sheds light on a deeper premise in the book—that even the best doctors can be wrong, and someone with no medical training can get it right.

Jauhar laments diagnostic workup of the past and explains that diagnosis used to be based on observation and physical exam of the patient. He points out that these tools appear to be obsolete today and states that doctors are so uncomfortable with uncertainty that they rely on tests and numbers. The obvious is overlooked, not just because of physician over-confidence but because of fear of missing something that might result in being sued for malpractice.

Using his own misdiagnosis of a patient as an example of how physicians mistakenly come to erroneous conclusions, Jauhar describes a patient, an intern, who sees him for chest pain. He shows us how easily misdiagnosis comes into play by his own diagnostic error. This patient did not have pericarditis as Jauhar thought, but a heart attack. Jauhar missed it, causing the patient to suffer through the night with extreme pain. After discovering his faulty diagnosis, he even acted in ways that some doctors might when first learning of their own misdiagnoses–he initially blamed everybody else.

Jauhar writes, “Most doctors are afraid to take responsibility for medical errors.” However, he does eventually do the right thing. This is where we align with him, feel empathy toward an imperfect human being. He admits his mistake to his patient and says, “I thought you had pericarditis. I was obviously wrong. I’m sorry.”

Assuming the patient would not want to be treated by him again, Jauhar asks if he’d been given a referral to another cardiologist. The patient insisted on sticking with him as his doctor. And the point is clear that it is the apology, the relationship between doctor and patient, which increases patient loyalty and reduces potential malice when a medical error occurs.

Most patients have been treated like objects at one point or another so many will relate to Jauhar’s description of patients dismissed by doctors who just don’t care. He recounts a conversation with a nurse about the assumption that most patients are unwilling to ask questions and divulge personal information to doctors, something they do with nurses. When asked why, the nurse responded with, “Because they have a relationship with me.”

Bingo.

Jauhar consistently alludes to the lack of time for the doctor-patient relationship, something that is still considered a cornerstone of quality care, even the heart of care. He draws the conclusion that it is the time pressure that contributes to medical errors and the lack of physician and patient satisfaction.

Doctored isn’t a comfortable read, but a compelling one. I found myself not wanting to continue reading at times, overwhelmed by the road blocks doctors and patients face today. There were times when I felt slimed by the horror stories about deceptive physicians, wondering just how much of the same I’d been subjected to as a patient with a chronic pain condition lasting 16 months when I received 10 misdiagnoses from 11 physicians.

Jauhar does offer a few solutions to overuse of health care and to dwindling time with patients. I won’t go into all of them, but I’m happy to report that better-informed patients are one of the more potent solutions that Jauhar recommends. “If patients are more involved in medical decision-making, there would be more restraints on doctors’ behavior, thus decreasing unnecessary testing.”

Not exactly the reason I was hoping for but active participation on the part of the patient is crucial to increasing quality of care and safety.

 

 

 

 

 

 

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There have been eight diagnosed cases of Ebola in the United States. A Liberian patient died because of the disease on October 8 in a Dallas, Texas hospital. Two hospital employees who cared for him have been infected with the Ebola virus. More than 8,900 people in Guinea, Liberia, Nigeria, Senegal and Sierra Leone have contracted Ebola since March, according to the World Health Organization (WHO.) More than 4,400 people have died because of the disease. 

The only way to contain the Ebola outbreak is to address it in West Africa. “We have to stop it (Ebola) at its source. That’s the only way to get control,” said the director of the CDC, Tom Frieden. “As long as there is a major epidemic in West Africa, the rest of the world is at risk.”

West Africa is facing the worst Ebola outbreak in history. The WHO reported on October 14, 2014, that the number of new Ebola cases in Guinea, Liberia and Sierra Leone could reach 10,000 a week by the end of this year. The CDC predicts that by January of 2015 there will be 1.4 million cases of Ebola in Sierra Leone and Liberia alone. The World Health Organization (WHO) has declared it an international public health emergency. 

What some might not be aware of, is the bigger picture. This outbreak becomes even more critical if the virus continues to spread in West Africa at its current pace. If it does, then much larger global outbreaks of the Ebola virus will become more likely. This could pose a significant risk to the U.S. and other countries in the coming months. Ebola needs to be stopped before it becomes a pandemic.

There is no widely available vaccine or treatment for Ebola. The WHO reported that more than 400 health workers have developed the disease in Guinea, Liberia, Nigeria, and Sierra Leone, and  200 have died. There are shortages of medical staff and protective medical equipment for health workers in West Africa.

In the absence of an available vaccine or cure, the only way to contain the outbreak is through isolation, reports Scientific American. “In order to halt the calamitous chain of transmission, at least 50 percent of all infectious Ebola patients in West Africa would need to be isolated and kept from infecting other individuals.”    

Aid organizations, partnering with the WHO, have deployed doctors, nurses, and medical supplies to the affected countries. They are providing health care services, educational programs and mental health support.  

Because there is a shortage of doctors and nurses in West Africa, medical personnel are volunteering to fight the Ebola virus there. There is a desperate need for more volunteers to staff hospitals and clinics, and to provide education to the people who live there.

In response to relief efforts to West Africa, Doctors without Borders/MSF reports, “critical gaps in all aspects of the response, including medical care, training of health staff, infection control, contract tracing, epidemiological surveillance, alert and referral systems, community education and mobilization.”

The United Nations (UN) officials called the Ebola crisis unparalleled in modern times.

Aid organizations need our help so they can train and deploy more volunteers to the affected areas in West Africa. Organizations such as Doctors Without Borders/MSF, The American Red Cross and UNICEF, among many others, are providing health care, education programs, emotional support, medical supplies, and more.

Doctors Without Borders/MSF has sent response teams, including many doctors, who are treating the sick. MSF currently has 3,058 staff working in affected countries. They operate six Ebola management centers and provide more than 502 hospital beds, and more.

The American Red Cross is leading disease prevention education and awareness efforts. They just opened a new clinic to fight Ebola in Sierra Leone. Thousands of International Federation of Red Cross volunteers have been trained and deployed to support the response. They are in the process of training more than 5,600 volunteers to reach a larger geographical area.

One aspect of this devastating crisis that many of us don’t know about, is the 3,700 children in Guinea, Liberia and Sierra Leone who have lost one or both parents to Ebola. According to UNICEF, these children are in urgent need of attention and support, especially because in some communities the fears about Ebola have driven families apart, leaving orphaned children abandoned. UNICEF helped the Liberian government train 400 additional mental health and social workers and have supplied 550 tons of supplies to the affected areas. 

Following is a list of non-governmental, charity organizations that are involved in relief efforts in the Ebola-affected countries. Even though our government has increased its efforts to help contain the Ebola crisis, President Obama emphasized the need for help from nonprofit organizations to effectively fight it.

This is where you and I come in. I donated to two organizations. Please consider giving your support.

This is by no means a complete list. I do not endorse any of these organizations. This list is provided for your convenience. 

Charity Organizations Providing Relief Efforts in West Africa to Fight Ebola

Africare  http://www.africare.org/how-you-can-help/africare-ebola-outbreak-relief/

AmeriCares http://www.americares.org/who-we-are/newsroom/news/ebola-outbreak-urgent-deliveries-medicines-protective-gear-west-africa.html

American Jewish World Service  https://secure.ajws.org/site/Donation2?df_id=7482&7482.donation=form1

Amref Health Africa  http://www.amrefusa.org/newsroom/news/responding-to-the-ebola-outbreak-in-west-africa/   

American Red Cross http://www.redcross.org/news/article/West-Africa-Ebola-Outbreak

Catholic Relief Services  https://secure.crs.org/site/Donation2;jsessionid=A05BB59D666073899A68B908C7752BEF.app262b?7200.donation=form1&df_id=7200&s_src=one   

Doctors Without Borders http://www.doctorswithoutborders.org/our-work/medical-issues/ebola   

Medical Teams International  http://www.medicalteams.org/where-we-work/africa

Med Sans Frontieres/Doctors Without Borders http://www.doctorswithoutborders.org/our-work/medical-issues/ebola

 

 

More Than Me http://www.morethanme.org

National Nurses United  http://www.nationalnursesunited.org/press/entry/nurses-arrange-donation-of-1000-hazmat-suits-to-fight-ebola/

Partners in Health http://www.pih.org/blog/partners-in-health-ebola-response?subsource=homepage_take_action      

Samaritan’s Purse http://www.samaritanspurse.org/disaster/ebola-crisis/

UNICEF  http://www.unicefusa.org/mission/survival/ebola    

Photo by John Moore, Getty Images

 

 

 

 

 

 

 

 

 

 

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The medical industry has suffered more security breaches than banks and the military combined, reports CNN, 90% of Hospitals and Clinics Lose Their Patients’ Data.

Just this year alone, 2.1 million patients’ medical records were stolen. That doesn’t include the major hacking into Community Health System’s computer network where 4.5 million of its stored social security numbers, names, addresses, and birth dates were lifted.

Community Health Systems operates 206 hospitals across the United States. Anyone who received treatment from a physician’s office tied to a network-owned hospital in the last five years has been affected.

This is not good news, that’s for sure. And it doesn’t look like it’s getting better any time soon. Hackers are becoming more sophisticated and they stand to gain a lot from hacking into your personal medical information. They make plenty of money by stealing medical records with social security numbers to commit identity fraud, open bank accounts, new credit cards, take out loans and ruin personal credit histories. Not to mention fraudulently billing health insurance companies, including Medicare, and harvesting prescription medications that can be sold for profit on the street.

Hackers are stealing patients’ medical records and private information from hospitals, universities, private clinics, health care organizations and health departments.

How does this happen?

62 percent of health care organizations are moving patients’ electronic medical records to cloud storage without proper security in place. Open WiFi is also a problem. Health care providers use WiFi networks to allow staff to share patient information more easily and these WiFi networks are not secure as they should be, according to a Huffington Post article, Why Your Medical Records Are No Longer Safe

The 4th Annual Benchmark study done by the Ponemon Institute reports that 90 percent of health care organizations had at least one data breach within the last two years. Billing and health insurance records are the most common type of patient data that is stolen. 

Kind of makes you think about your health insurance company and what is happening behind the scenes with your medical information, doesn’t it? How about medical billing practices from doctors’ offices, hospitals and medical clinics?

But there’s more.

The most common culprits for these data breaches are cloud storage for patient electronic medical records, patient data stored on unsecure databases, and patient registration on unsecure sites. Health organization employee negligence is considered one of the biggest security threats, according to the study, along with doctors and hospitals that do not encrypt patient data.

You’d think HIPAA laws would protect our medical information, especially with the onset of electronic medical records. HIPAA does not demand that hospitals and physicians use encryption.

Why not?

According to Semel Consulting’s article, HIPAA Doesn’t Require Data Encryption, it has been suggested that data encryption be a requirement for health care organizations but the medical industry has refused, claiming that it would be an unfair financial burden.

Really?

That leaves millions of patients’ private medical information/medical records vulnerable to potential hackers. Our medical records include our social security numbers, home address, and other personal information.

I don’t know about you, but I would like my medical records and personal information to be encrypted if they are stored on cloud. And that’s at the very least.

Tips to help avoid getting hacked

1. Avoid storing your own medical records or medical information on a cloud-based platform unless you are certain of the security. I still wouldn’t do it, not yet anyway. I keep hard copies of my medical records in files so I can withdraw a piece of information when I need it.

2. Avoid using health/medical apps that share your information. Read the fine print before you consider downloading an app to your smartphone or other digital device. 

3. Keep your list of medications, emergency and physician contact information in a place that is easily accessible. Consider placing the information on a Medical ID card and slip it into the slot next to your driver’s license in your wallet. I have a free, no obligation, Medical ID card on my website that you can print out. See here. 

4. You can also scan your pertinent records and keep them in a secure file on your digital device, with no connection to the internet. Consider creating a passcode in case you lose your device.

5. Each time a medical provider asks for your social security number, ask if it is necessary to provide it and if so, ask if the last four digits will suffice.

6. Ask your health insurer for a copy of your medical records (EOBs.)

7. Review your medical bills closely.

8. Visit the U.S. Department of Health & Human Services health information privacy site to view major security breaches.

This CNN Money article, Simple Tips to Avoid Getting Hacked,  offers a number of good tips to protect your privacy and online security.

 

 

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The Business Insider article, Senator Warns Fitbit is a Privacy Nightmare and Could be Tracking Your Movements, reports that Senator Chuck Schumer called for federal protections to prevent companies like Fitbit from collecting, sharing and selling consumer data to health insurers, employers and others. Fitbit, like Nike+FuelBand and Jawbone, sells wearable trackers that monitor sleep, health functions and physical activity.

Senator Schumer accused FitBit and Smartphone apps of sharing users’ information and location, infringing on consumers’ privacy without their consent. A privacy nightmare is right. But in a very recent addendum to the article, FitBit responded with a denial of selling consumers’ data to third parties. They share it though, and it says so right there in the fine print.

I know. I purchased a FitBit Flex a week ago and when I read the fine print about my data being collected and shared without my permission, I returned it to the store. I didn’t want my personal behaviors shared with companies, data brokers, and others. There’s something unseemly and downright scary about that.

Which brings up the issue of healthcare data mining and how that could and may have already affected us all as patients. You may not know it but with the onset of electronic medical records, health/fitness apps and more, your data might be collected without your knowledge. According to Bloomberg’s article, Your Doctor Knows You’re Killing Yourself, some hospitals and health insurance companies are using detailed patient data to create profiles to identify those who are at high risk for getting sick and how much it would cost to treat them. Their intention, according to the article, is to intervene before a health crisis occurs.

Why are they doing this? Under Obamacare, hospitals have a big incentive to keep patients healthy because the law changes how they are paid in terms of penalties and incentives. With your health information, they can protect their financial bottom line by intervening if you are at risk.

Just like retailers have been doing for years, your credit card purchases might be tracked to see if you buy cigarettes, cancel your gym membership, fill your prescriptions, and more.

Does anyone see this is as a direct violation of privacy?

Carolinas Healthcare System, which runs more than 900 medical care centers, has begun collecting data on more than 2 million people to identify high risk patients so that doctors can intervene before they get sick. They purchased the information from data brokers who scan public records and credit card purchases.

What this could mean for you and me are surprise phone calls, letters or other forms of communication about our behaviors that affect health. Probably more.

According to Bloomberg’s article, Hospitals Are Mining Patients’ Credit Card Data to Predict Who Will Get Sick, University of Pittsburgh Medical Center’s insurance provider, purchased data on more than 2 million of its members to make predictions about which patients are more likely to to get sick, go to the ER or an urgent care center.

If patients’ health and fitness data is being collected and sold, what’s next? Health insurance companies can no longer deny coverage, but might there be incentives and penalties for patients based on their behaviors that support their health or put it at risk?

What happened to patient autonomy? Isn’t that an essential tenet of patient-centered care?  

We accept certain social media data mining. You see it every time an ad pops up after you have searched or clicked on a similar item. You’re being tracked. But somehow I thought, or naively believed, that my health information was private, confidential. HIPAA privacy laws say so. Are medical facilities and health insurers taking a sledgehammer to HIPPA by collecting patients’ data?

Personally, I value my privacy. It’s one thing if I don’t read the fine print on an app or fitness tracker and my data is shared. But if my data is collected without my knowledge and I am contacted by my physician or health insurance plan in the name of proactive or preventive healthcare, I don’t think I’d like that. It would definitely make me feel cagey, fearful of being watched somehow.  

The physician-patient relationship is crucial for quality of care, patient safety and patient satisfaction. If data becomes a major driver, then how do patients maintain a level of honesty with their providers?

Granted, we don’t have much privacy anymore, but there must be some level of confidentiality and privacy or we will, in Orwellian terms, become a society where individuals are monitored at the expense of the welfare of a free society.

 

 

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