Debbie D’Elia holds an attachment for the abdominal feeding tube needed by her husband Dante (right). Dante has been in and out of four health care facilities since he had complications following gall bladder surgery in January 2009. Photo by Tina Peterson

by Tina Peterson
 

Georgette D’Elia feels nervous in hospitals. Many people do, but she has a good reason for it. Her 89-year-old father Dante D’Elia has been in and out of four different health care facilities in the region over the past year and a half. The care he has received has ranged so widely in quality that Georgette and her mother, Debbie, are often afraid to leave him alone at night in a hospital bed.

The D’Elias live in Altoona, but they now come to Mount Nittany Medical Center because they said Dante always receives very good care there. Like many consumers, they found health care providers they trust through trial and error.

“This is the only place we feel safe to bring him,” Georgette said.

Dante had gall bladder surgery at a hospital in Altoona in January 2009. Georgette said a doctor there forgot to prescribe post-operative antibiotics, and Dante developed an infection that became an abscess. Complications with his feeding tube followed, and he spent the next 16 months going in and out of various hospitals in Altoona and Johnstown.

Debbie and Georgette described care that ranged in quality from unprofessional to incompetent to neglectful. They said they were especially horrified at the treatment he received at a long-term acute care hospital in Johnstown, where they said he was dehydrated and near death after 11 days there.

After her father’s experience at that hospital, Georgette began to research health care facilities in the area. She found an article published in The New York Times in February that included disturbing statistics about Select Medical Corporation, which owns that facility and others around the country. According to the article, in 2007 and 2008 “Select’s hospitals were cited at a rate almost four times that of regular hospitals for serious violations of Medicare ules.”

Debbie said she learned about others’ bad experiences at the facility through chance conversations with strangers. She and Georgette agree they’ll never let Dante be transferred to that hospital again.

 

How do you know?

The D’Elia family’s experience is an extreme case, but it illustrates the uncertainty and fear many people face when navigating the health care system. How does a man needing prostate surgery find the best doctor? How does a woman needing a hysterectomy find the best hospital? How does a patient learn about all treatment options in the region, or find out who performs the latest, state-of-the-art procedures?

Looking up information about a physician on the Internet is much more difficult than, say, looking up a movie or a vacation destination. Many consumer ratings websites exist for doctors but the information available on them is patchy at best. For example, the user-driven review site Angieslist.com does not yet have enough charter subscribers in central Pennsylvania to offer reviews of physicians in the area. Websites offering searchable data on hospitals, however, are more widely available (see sidebar).

Comprehensive databases on doctors do exist, but they’re not available to the public. The National Practitioner Data Bank provides information for state medical licensing officials and health care facilities to monitor and discipline physicians engaging in unprofessional conduct. It’s also meant to prevent incompetent health care practitioners from moving from state to state without disclosure of malpractice payments or other spots on their records. But a patient concerned about the qualifications of his doctor can’t gain access to it.

Even if the data were accessible, research suggests that people don’t use the Internet very often to learn about health care providers. More than 50 percent of Americans rely on friends and relatives for advice about choosing a primary care physician, according to a 2008 poll by the Center for Studying Health System Change. Only 10.8 percent look to online physician ratings sites for information.

The picture looks a little different when it comes to choosing a specialist. In those cases, 68 percent of people rely on recommendations given by their primary care physician, and only about 20 percent seek advice from friends.

In all cases, only 2 percent of people polled by the center said they had ever changed physicians based on ratings they read online. When it comes to finding doctors, it seems word of mouth is still king.

 

Accidents happen?

Bellefonte resident Mary Vollero is one of many who followed the advice of her primary physician to see a particular specialist. In her first office visit, the specialist interpreted a recent test result and gave Vollero a surprising and unwelcome diagnosis.

“He was proposing this procedure that was pretty dramatic, and I was kind of shocked and upset,” Vollero said.

A few days later the doctor’s office called and said he had read the chart wrong. “I don’t even think they said they were sorry,” she added.

Before she received the news, Vollero had already decided to seek a second opinion from the other specialist her family physician recommended. This time, she learned that no procedure was necessary.

Vollero has been reluctant to call the first doctor on his error, partly because she has friends who have had positive experiences with him.

“Is it just a fluke that an accident happened, that he read it wrong?” she wondered aloud. Ordinarily, she said, she would take action in such a situation. But she wonders if it wasn’t just an honest mistake, and she hasn’t yet decided whether she will pursue the matter.

After the experience, Vollero said, she talked with several of her friends and found out that many people in her social network feel they have had unnecessary procedures, perhaps because they weren’t aware of their options.

Her attitude and behavior as a health care consumer has changed, she said.

“I feel a lot more cautious, and like I need to be informed.”

 

How do doctors know?

It may come as a surprise to patients that many doctors rely on low-tech word-of-mouth networks of knowledge for their referral decisions. Kristen Grine, D.O., a family medicine physician with the Penn State Hershey Medical Group in State College, said that for specialist referrals, she relies mostly on her personal experiences with doctors.

Grine said she’s familiar with many practices in town because she grew up in the area. She said she also learned a great deal about other doctors in the area during her residency, when she worked in several different practices.

“You learn the ropes because you’re at the hospital elbow-to-elbow with these specialists,” she said.

She also pays attention to what her patients say. If someone comes in to see her and raves about a particular physician, Grine said she’ll be more likely to send other patients to see him or her.

If she doesn’t have any experience with physicians in a particular specialty, she said, she does online research using many of the same websites and search engines her patients might use. The only difference, she said, is that she can frequently get access to a particular doctor’s e-mail address and contact him or her directly with questions.

Two local physicians said communication among doctors in the region used to be quite different. Bellefonte residents Gay and James Dunne are retired dermatologists who had a private practice in State College for 30 years, and who now volunteer for Centre Volunteers in Medicine. In the 1970s they belonged to Centre County Medical Society, a professional association for local doctors.

“It was a very good means of communications between physicians,” Gay said.

The organization became less active by the early 1990s, and the Dunnes observed that its decline coincided with the rise of the big health care groups in the region. Gay said she thinks this change has had an unfortunate impact on communication among physicians.

Now, she said, “they behave more like employees instead of independently thinking people.”

 

Networks and coverage

The inner dynamics of big health care groups in the region can influence what options are available to patients. This influence is often more apparent to physicians who make referral decisions. Paul Simpson, M.D., is a physician with a private practice in Clinton County. In the past, when he worked in an office of one of the big providers in the area, he said it was often easier to refer patients to specialists within that system because he knew they would accept the same health insurance.

Simpson said doctors also tend to make referrals within their own system because they’re more familiar with those doctors, and because communication between doctors’ offices is less prone to error when they’re both in the same system.

The inner workings of insurance companies also impact patients, sometimes in ways that are not known until weeks after a doctor’s visit. Simpson said he has seen many cases in which an unexpected change in a patient’s insurance ends up making him or her responsible for paying costs out-of-pocket. Nearly every time he refers a patient, he said, he has to call their insurance company and double-check to see if the other physician is within their network. Sometimes there is uncertainty as to whether a visit to the other physician would be covered.

“It resulted in a lot of people being stuck with the medical bill,” Simpson said.

Based on his own experiences as a physician practicing in several different cities over the years, Simpson believes much of this switching of networks is a deliberate practice on the part of the insurance companies. He said he thinks that a lot of the complexity in the health care system is designed to maximize their profits.

“Their bottom line depends on being able to avoid paying money for healthcare,” he said, so they make the process so confusing that it’s unclear what is covered and what is not.

 

Paying attention

Not everyone shares Simpson’s opinion that the health care system is so dysfunctional. Several years ago, John Dickison underwent 20 surgeries in 16 months after a serious motorcycle accident. His medical team included orthopedic specialists, a plastic surgeon and a specialist in infectious diseases. He said he was very happy with the care he received and that he feels lucky to have insurance, without which he estimates his treatment would have cost him well over $1 million.

“I couldn’t have afforded anything. Heck, my artificial leg cost more than our house,” he said.

Dickison acknowledges that insurance companies can be unwieldy, but he said he believes patients need to be actively involved and take responsibility for tracking their own care. It’s vitally important, he said, to keep good records of everything, from policy numbers to medications and when to take them.

He said he learned the hard way how important it is to keep track of a medication schedule. One morning in the hospital, he said, he noticed that he hadn’t been given his usual medications and he alerted a nurse. The hospital’s new computerized system had not automatically renewed the prescriptions he was on, he said, including some intravenous antibiotics. By the time the error had been flagged and his antibiotics were started up again after a day or two, the infections his body was fighting had given him a fever of 104 degrees.

That experience was the only blemish on a course of treatments that Dickison said he was very pleased with overall. Mistakes can happen, he acknowledged, but when care involves multiple medications and treatments, the patient needs to help too.

“It's incumbent on the patient - or the patient's caretakers - to be on top of that stuff,” Dickison said.

The positive impact of patients’ active involvement on their own care is supported by recent research, according to the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality.

 

Shots in the dark

The best way to keep track of medical records, prescriptions and treatments, most health care providers agree, is to cultivate a relationship with one physician over time. But Ann Glaser learned that sometimes a person needs a fresh perspective.

Glaser had seen the same optometrist for 15 years, who recommended that she see a neurologist and an ophthalmologist when she began having double vision. Each specialist gave her a different diagnosis, both of which turned out to be incorrect.

“No one had put a real constellation of symptoms together,” she said.

Glaser went to see a new optometrist, who immediately asked her if she had been losing weight recently. She said she had, and this doctor whom she had never seen before was able to make the correct diagnosis of thyroid disease.

She added that several of the local doctors she has seen didn’t seem to be very good at diagnostics. For example, a gastroenterologist in the region did not test her for gluten allergies. But it was the first test a gastroenterologist in Philadelphia ran on her when she went there.

 

Connecting the dots

It’s always easier to see connections when one has access to all the information. This is the basic idea driving the adoption by many health care providers of electronic health records, or digitized medical histories that can be shared among doctors’ offices and hospitals, and kept constantly up-to-date by physicians. A push toward electronic health records was included in recent federal legislation including the health care bill.

Opinions vary widely among physicians about the effectiveness of such systems, and some consumer rights groups argue that digitizing and sharing personal information may threaten patients’ privacy.

Some health care systems dedicate staff members to help patients connect the dots for care and treatment. For example, nurses in Geisinger’s Proven Health Navigator (PHN) program help patients manage chronic conditions, monitor early warning signs of problems, and help them get appropriate treatment early enough to avoid an emergency room visit.

“What we try to do is prevent health issues before they occur,” said Patricia Urosevich, National Media manager for Geisinger.

Urosevich said the PHN program is a marriage between Geisinger Health Plan and Geisinger Health System.

But Gay Dunne said she is not convinced that partnerships between insurance companies and health care providers always function with the best interests of the patient in mind.

“It’s almost a conflict of interest, in my opinion,” she said.

Dunne said she thinks patients need to be their own advocate, and that requires a lot of information. She said patients should do research to find out what they can, take initiative to have conversations with their primary care physicians, and not depend on the system to make decisions that will benefit them the most.

“People will not be taken care of by the health care system,” she said. “They need to take care of themselves.” Georgette D’Elia feels nervous in hospitals. Many people do, but she has a good reason for it. Her 89-year-old father Dante D’Elia has been in and out of four different health care facilities in the region over the past year and a half. The care he has received has ranged so widely in quality that Georgette and her mother, Debbie, are often afraid to leave him alone at night in a hospital bed.

The D’Elias live in Altoona, but they now come to Mount Nittany Medical Center because they said Dante always receives very good care there. Like many consumers, they found health care providers they trust through trial and error.

“This is the only place we feel safe to bring him,” Georgette said.

Dante had gall bladder surgery at a hospital in Altoona in January 2009. Georgette said a doctor there forgot to prescribe post-operative antibiotics, and Dante developed an infection that became an abscess. Complications with his feeding tube followed, and he spent the next 16 months going in and out of various hospitals in Altoona and Johnstown.

Debbie and Georgette described care that ranged in quality from unprofessional to incompetent to neglectful. They said they were especially horrified at the treatment he received at a long-term acute care hospital in Johnstown, where they said he was dehydrated and near death after 11 days there.

After her father’s experience at that hospital, Georgette began to research health care facilities in the area. She found an article published in The New York Times in February that included disturbing statistics about Select Medical Corporation, which owns that facility and others around the country. According to the article, in 2007 and 2008 “Select’s hospitals were cited at a rate almost four times that of regular hospitals for serious violations of Medicare ules.”

Debbie said she learned about others’ bad experiences at the facility through chance conversations with strangers. She and Georgette agree they’ll never let Dante be transferred to that hospital again.

 

How do you know?

The D’Elia family’s experience is an extreme case, but it illustrates the uncertainty and fear many people face when navigating the health care system. How does a man needing prostate surgery find the best doctor? How does a woman needing a hysterectomy find the best hospital? How does a patient learn about all treatment options in the region, or find out who performs the latest, state-of-the-art procedures?

Looking up information about a physician on the Internet is much more difficult than, say, looking up a movie or a vacation destination. Many consumer ratings websites exist for doctors but the information available on them is patchy at best. For example, the user-driven review site Angieslist.com does not yet have enough charter subscribers in central Pennsylvania to offer reviews of physicians in the area. Websites offering searchable data on hospitals, however, are more widely available (see sidebar).

Comprehensive databases on doctors do exist, but they’re not available to the public. The National Practitioner Data Bank provides information for state medical licensing officials and health care facilities to monitor and discipline physicians engaging in unprofessional conduct. It’s also meant to prevent incompetent health care practitioners from moving from state to state without disclosure of malpractice payments or other spots on their records. But a patient concerned about the qualifications of his doctor can’t gain access to it.

Even if the data were accessible, research suggests that people don’t use the Internet very often to learn about health care providers. More than 50 percent of Americans rely on friends and relatives for advice about choosing a primary care physician, according to a 2008 poll by the Center for Studying Health System Change. Only 10.8 percent look to online physician ratings sites for information.

The picture looks a little different when it comes to choosing a specialist. In those cases, 68 percent of people rely on recommendations given by their primary care physician, and only about 20 percent seek advice from friends.

In all cases, only 2 percent of people polled by the center said they had ever changed physicians based on ratings they read online. When it comes to finding doctors, it seems word of mouth is still king.

 

Accidents happen?

Bellefonte resident Mary Vollero is one of many who followed the advice of her primary physician to see a particular specialist. In her first office visit, the specialist interpreted a recent test result and gave Vollero a surprising and unwelcome diagnosis.

“He was proposing this procedure that was pretty dramatic, and I was kind of shocked and upset,” Vollero said.

A few days later the doctor’s office called and said he had read the chart wrong. “I don’t even think they said they were sorry,” she added.

Before she received the news, Vollero had already decided to seek a second opinion from the other specialist her family physician recommended. This time, she learned that no procedure was necessary.

Vollero has been reluctant to call the first doctor on his error, partly because she has friends who have had positive experiences with him.

“Is it just a fluke that an accident happened, that he read it wrong?” she wondered aloud. Ordinarily, she said, she would take action in such a situation. But she wonders if it wasn’t just an honest mistake, and she hasn’t yet decided whether she will pursue the matter.

After the experience, Vollero said, she talked with several of her friends and found out that many people in her social network feel they have had unnecessary procedures, perhaps because they weren’t aware of their options.

Her attitude and behavior as a health care consumer has changed, she said.

“I feel a lot more cautious, and like I need to be informed.”

 

How do doctors know?

It may come as a surprise to patients that many doctors rely on low-tech word-of-mouth networks of knowledge for their referral decisions. Kristen Grine, D.O., a family medicine physician with the Penn State Hershey Medical Group in State College, said that for specialist referrals, she relies mostly on her personal experiences with doctors.

Grine said she’s familiar with many practices in town because she grew up in the area. She said she also learned a great deal about other doctors in the area during her residency, when she worked in several different practices.

“You learn the ropes because you’re at the hospital elbow-to-elbow with these specialists,” she said.

She also pays attention to what her patients say. If someone comes in to see her and raves about a particular physician, Grine said she’ll be more likely to send other patients to see him or her.

If she doesn’t have any experience with physicians in a particular specialty, she said, she does online research using many of the same websites and search engines her patients might use. The only difference, she said, is that she can frequently get access to a particular doctor’s e-mail address and contact him or her directly with questions.

Two local physicians said communication among doctors in the region used to be quite different. Bellefonte residents Gay and James Dunne are retired dermatologists who had a private practice in State College for 30 years, and who now volunteer for Centre Volunteers in Medicine. In the 1970s they belonged to Centre County Medical Society, a professional association for local doctors.

“It was a very good means of communications between physicians,” Gay said.

The organization became less active by the early 1990s, and the Dunnes observed that its decline coincided with the rise of the big health care groups in the region. Gay said she thinks this change has had an unfortunate impact on communication among physicians.

Now, she said, “they behave more like employees instead of independently thinking people.”

 

Networks and coverage

The inner dynamics of big health care groups in the region can influence what options are available to patients. This influence is often more apparent to physicians who make referral decisions. Paul Simpson, M.D., is a physician with a private practice in Clinton County. In the past, when he worked in an office of one of the big providers in the area, he said it was often easier to refer patients to specialists within that system because he knew they would accept the same health insurance.

Simpson said doctors also tend to make referrals within their own system because they’re more familiar with those doctors, and because communication between doctors’ offices is less prone to error when they’re both in the same system.

The inner workings of insurance companies also impact patients, sometimes in ways that are not known until weeks after a doctor’s visit. Simpson said he has seen many cases in which an unexpected change in a patient’s insurance ends up making him or her responsible for paying costs out-of-pocket. Nearly every time he refers a patient, he said, he has to call their insurance company and double-check to see if the other physician is within their network. Sometimes there is uncertainty as to whether a visit to the other physician would be covered.

“It resulted in a lot of people being stuck with the medical bill,” Simpson said.

Based on his own experiences as a physician practicing in several different cities over the years, Simpson believes much of this switching of networks is a deliberate practice on the part of the insurance companies. He said he thinks that a lot of the complexity in the health care system is designed to maximize their profits.

“Their bottom line depends on being able to avoid paying money for healthcare,” he said, so they make the process so confusing that it’s unclear what is covered and what is not.

 

Paying attention

Not everyone shares Simpson’s opinion that the health care system is so dysfunctional. Several years ago, John Dickison underwent 20 surgeries in 16 months after a serious motorcycle accident. His medical team included orthopedic specialists, a plastic surgeon and a specialist in infectious diseases. He said he was very happy with the care he received and that he feels lucky to have insurance, without which he estimates his treatment would have cost him well over $1 million.

“I couldn’t have afforded anything. Heck, my artificial leg cost more than our house,” he said.

Dickison acknowledges that insurance companies can be unwieldy, but he said he believes patients need to be actively involved and take responsibility for tracking their own care. It’s vitally important, he said, to keep good records of everything, from policy numbers to medications and when to take them.

He said he learned the hard way how important it is to keep track of a medication schedule. One morning in the hospital, he said, he noticed that he hadn’t been given his usual medications and he alerted a nurse. The hospital’s new computerized system had not automatically renewed the prescriptions he was on, he said, including some intravenous antibiotics. By the time the error had been flagged and his antibiotics were started up again after a day or two, the infections his body was fighting had given him a fever of 104 degrees.

That experience was the only blemish on a course of treatments that Dickison said he was very pleased with overall. Mistakes can happen, he acknowledged, but when care involves multiple medications and treatments, the patient needs to help too.

“It's incumbent on the patient - or the patient's caretakers - to be on top of that stuff,” Dickison said.

The positive impact of patients’ active involvement on their own care is supported by recent research, according to the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality.

 

Shots in the dark

The best way to keep track of medical records, prescriptions and treatments, most health care providers agree, is to cultivate a relationship with one physician over time. But Ann Glaser learned that sometimes a person needs a fresh perspective.

Glaser had seen the same optometrist for 15 years, who recommended that she see a neurologist and an ophthalmologist when she began having double vision. Each specialist gave her a different diagnosis, both of which turned out to be incorrect.

“No one had put a real constellation of symptoms together,” she said.

Glaser went to see a new optometrist, who immediately asked her if she had been losing weight recently. She said she had, and this doctor whom she had never seen before was able to make the correct diagnosis of thyroid disease.

She added that several of the local doctors she has seen didn’t seem to be very good at diagnostics. For example, a gastroenterologist in the region did not test her for gluten allergies. But it was the first test a gastroenterologist in Philadelphia ran on her when she went there.

 

Connecting the dots

It’s always easier to see connections when one has access to all the information. This is the basic idea driving the adoption by many health care providers of electronic health records, or digitized medical histories that can be shared among doctors’ offices and hospitals, and kept constantly up-to-date by physicians. A push toward electronic health records was included in recent federal legislation including the health care bill.

Opinions vary widely among physicians about the effectiveness of such systems, and some consumer rights groups argue that digitizing and sharing personal information may threaten patients’ privacy.

Some health care systems dedicate staff members to help patients connect the dots for care and treatment. For example, nurses in Geisinger’s Proven Health Navigator (PHN) program help patients manage chronic conditions, monitor early warning signs of problems, and help them get appropriate treatment early enough to avoid an emergency room visit.

“What we try to do is prevent health issues before they occur,” said Patricia Urosevich, National Media manager for Geisinger.

Urosevich said the PHN program is a marriage between Geisinger Health Plan and Geisinger Health System.

But Gay Dunne said she is not convinced that partnerships between insurance companies and health care providers always function with the best interests of the patient in mind.

“It’s almost a conflict of interest, in my opinion,” she said.

Dunne said she thinks patients need to be their own advocate, and that requires a lot of information. She said patients should do research to find out what they can, take initiative to have conversations with their primary care physicians, and not depend on the system to make decisions that will benefit them the most.

“People will not be taken care of by the health care system,” she said. “They need to take care of themselves.”

 

 

Graphic by Tina Peterson

Even the latest health care reform legislation does little to help patients navigate through a system that operates largely by word-of-mouth, insurance company dictates or the financial interests of healthcare corporations or physicians groups.