How to Take Charge of Your Medical Records

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Couple and LaptopPatients have a lot to gain by getting access to their health information. Knowing where to get it and what to do with it is key. And, it’s your health. So it’s time you took control of all the information about your health. That’s the message a growing number of patient advocates are trying to spread to American health-care consumers. 

For most people, of course, it’s all too easy to simply leave their health records in the hands of doctors and hospitals. But that’s a big mistake, the advocates argue. First, it gives doctors too much power over information that is vital to patients, and it creates opportunities for errors. Perhaps more important, it keeps patients from using the information themselves for their own benefit.

“For consumers to start requesting and using their health information, it will be a game-changer for the health-care system,” says Christine Bechtel, a consultant for the National Partnership for Women and Families who spearheads the Get My Health Data campaign to get patients to ask doctors for their records. “Once we unlock the data, there’s an enormous amount we can do with it.”

Indeed, taking charge of your own records helps circumvent “data lock”—where one doctor’s records system can’t talk with another’s, or when hospitals make a fuss about transferring files to competing providers. By obtaining your records, you can serve as your own data hub and give out information when you are consulting specialists, seeking second opinions or shopping for less expensive care.

Controlling your data can also be a matter of safety, advocates argue. Studies show that 400,000 Americans die every year beause of medical errors, including 80,000 because doctors don’t have in hand the information they need. “This is an epidemic we can cure if patients can carry that information everywhere they go,” says Bettina Experton, CEO of health-care software maker Humetrix.

A big impetus for these advocacy efforts: electronic health records. Spurred by $30 billion in incentives, doctors and hospitals have digitized millions of Americans’ medical files so they can be more easily analyzed and shared, with the goal of improving care and cutting costs. But it’s often been easier for government regulators, data-crunchers and bill collectors to access information on patients than it has been for patients themselves.

To be sure, not everyone thinks it’s a good idea for patients to take charge of their records. Some doctors, for instance, worry that patient files often contain confusing data that could make people needlessly upset or require time-consuming explanations.

Meanwhile,some people are too sick, too busy or too anxious to want to monitor their health data closely.

But a growing number of Americans are eager for access to their own records as they travel from doctor to doctor, or look for answers on their own. And more physicians say the more information patients have, the more invested they will be in their own care.

Managing medical records can take knowledge and perseverance—but it can bring many benefits, from simplifying paperwork to improving well-being. Here are five important steps to make the process as efficient as possible, and get the most out of it.

Demand Your Data…

If you’re intimidated about asking your doctor, bear in mind that they are your records. You have the right, under federal law, to obtain copies of your medical information from virtually any place you receive health-care services. Providers have 30 days to act and can charge for the cost of reproducing the records, but not searching for them or retrieving them. If you spot errors, you can request changes or add information to make the file more accurate.

Many hospitals and doctors have also earned Medicare bonuses by promising to make summaries of your records easily available electronically. Some large health systems, such as Kaiser Permanente, have set up online portals where patients can download summaries, as well as make appointments, order refills and leave messages for doctors. What’s more, about half of all Americans—including all Medicare and Veteran’s Administration patients—can access at least some of their health records, free of charge, through the government’s Blue Button program. People can check if their provider or hospital participates at the Blue Button Connector.

But overall, few patients have accessed their records—so few, in fact, that hospitals have complained about a Medicare rule that penalizes hospitals unless at least 5% of their patients access their records electronically. Federal regulators have proposed lowering the 5% requirement to just a single patient instead.

That, in turn, has provoked outrage from advocacy groups that say many providers haven’t told patients they have the right to see their records, or haven’t given them a way to do so.

Ms. Bechtel notes that hospitals also benefit when patients can scrutinize their records. “If I have my data, I can spot errors, avoid repeat tests, detect fraud,” she says. “Enabling consumers to help, to be a second set of eyes, to be really involved with their data, will improve care and save money in the end.”

Many physicians appreciate the oversight. Farzad Mostashari, a former federal official in charge of health-information technology who is also involved in the Get My Health Data campaign, tells a story about an encounter with a physician in Wisconsin. The doctor told him that since he was giving his patients copies of their records, he heard from at least one each week about an error they had spotted. He said, ” I love it! It’s cheaper than a lawsuit.”

Organize It…

Another benefit to getting hold of data is the chance to organize it in a way that makes it easy to understand and use. A host of software programs and mobile apps let consumers create personal health records to do just that, often for little or no cost.

Instead of having to sort through a collection of different files, patients can collect all of their health records, and those of family members, together in one place. Then they can leverage the information in any number of ways, such as tracking everyone’s medications, immunizations, vital signs, test results and appointments, as well as setting fitness goals and tracking their progress toward reaching them.

Early programs of this type attracted little interest, largely because users had to enter information manually. Newer versions can import data directly from electronic records, wearable devices and other sources.

Microsoft HealthVault, for example, can combine data from a wide variety of sources. One app even lets users import, store and share copies of their X-rays and other scans. HealthVault can also send letters to physicians’ offices and hospitals with instructions on how to send patients their electronic medical data securely.

And an ever-growing array of apps make medical records available on smartphones. IBlueButton, an app made by Humetrix, can convert the often unwieldy Medicare and VA records available on the Blue Button website into easily accessible form on an iPhone or Android phone, and clearly display every diagnosis; every doctor, hospital and ER visit; and every lab test, X-ray and prescription, including when and where it was filled. It can do the same for patient records held by many hospitals and doctors’ offices as well.

IBlueButton users can create separate folders for family members’ records, research medical terms and send their records to providers who have iBlueButton’s professional version.

Share It…

Having health information handy also allows people to share data as they see fit, without waiting for a doctor’s office to get around to doing it. That might mean sending a child’s immunization records to school, emailing photos of suspicious skin lesions to specialists or obtaining second opinions.

“Anyone managing a chronic disease finds this out the hard way, carrying boxes of records from doctor to doctor,” says Joy Pritts, former chief privacy officer at the federal health information-technology agency. “Having electronic copies of your records makes that much easier.”

Having your own set of records to share can also remove the awkwardness of approaching a provider with a request. “A lot of people aren’t comfortable asking their doctor to send their records to another provider—it’s like asking your spouse if you can fool around,” says David McCallie, senior vice president for medical informatics at Cerner Corporation, an electronic-health-record vendor. “It would be much easier if you could just push a button and have your records flow.”

Giving family members or other caregivers a way to access critical information about you, such as your medications, allergies, blood type and major health issues, can literally be a life saver in an emergency, but they may not need to know your entire medical history. Microsoft HealthVault lets users invite other people to be custodians and decide what parts of their records to let them see.

Some apps are specifically designed for emergencies. An app called ICEBlueButton from Humetrix displays a code on a smartphone’s lock screen that paramedics can scan and read even if the user is unconscious. The app will display as much information as the user has decided to make available, and it can be programmed to automatically alert the user’s emergency contacts as well when the code is scanned. A newer version called SOS QR also broadcasts the user’s GPS location and can translate critical information into five languages as well.

One thing to bear in mind, though, is that while doctors are generally eager for specifics about your medical history, most insist on creating their own files for new patients, so you may still have to answer the same questions repeatedly.

And some physicians also warn patients that keeping information private because it seems sensitive or embarrassing can be dangerous. “Your cardiologist needs to know you’re taking Viagra,” says Lawrence Garber, an internist and director of medical informatics at the Reliant Medical Group in Worcester, Mass.

Generate It Yourself…

Health records aren’t the only place people can find information about their conditions. The universe of wearable devices is exploding—from tracking users’ steps walked and calories burned to monitoring heart rate, blood pressure, blood sugar, blood oxygenation and other potentially life-threatening issues.

If knowledge is power, these devices provide patients with unprecedented ability to keep themselves healthy or keep problems under control. People can figure out how much exercise they’re getting during the day, for instance, and how much they need to add to keep in shape. They can also get an instant update on their condition without having to wait for an appointment with their physician.

That’s a step some doctors like, too. “Why should you take a half-day out of your life to see me for 10 minutes and say that you’re fine?” says Daniel Sands, a Boston internist and founder of the nonprofit Society for Participatory Medicine. “I could say, ‘Check your own blood pressure, send it through the patient portal, and we’ll talk again in two weeks. ”

But many doctors are concerned about the security and accuracy of wearable devices, the potential for malpractice issues and the possibility of being overwhelmed with data they don’t need.

“There’s a distinction between solicited and unsolicited information,” Dr. Sands says. “You may want to track everything you do or eat during the day, and I may not be ready for that information.”

Indeed, patients who are part of the “quantified self” movement, and into charting every aspect of their lives, tend to be those who are already healthy, says Joseph Kvedar, a dermatologist and vice president of the Connected Health center at Partners HealthCare in Boston. “We’re more interested in the person who should be wearing a FitBit and is instead eating cheesecake on the couch.”

Protect It…

Having control of medical records brings plenty of benefits, but also a big responsibility: Storing that information on a personal computer or smartphone does make it vulnerable to loss, theft or hacking. Thieves could use a patient’s name and health-insurance numbers to obtain drugs or medical care illicitly, file fraudulent claims and leave the user with bogus charges. That means it’s critical to protect personal health records and medical apps with passwords and make sure any records they send and receive are encrypted.

What’s more, records loaded into a personal health record or other commercial app are no longer protected by the federal Health Insurance Portability and Accountability Act, or HIPAA. Most consumer fitness trackers aren’t covered by HIPAA either, which means the data they collect, including name and other identifying information, can be disclosed—even sold—by the developer. Many apps are free because they sell your data, so it pays to read the privacy policies closely. People could find themselves receiving many unsolicited marketing pitches.

Many experts point to Apple HealthKit’s policy as a model of privacy protection. Apple prohibits app developers from selling or using the data they collect for advertising or data-mining, except for purposes of health or health research. It also requires any apps it connects with to ask the user’s permission before accessing information about them “It’s really putting the user in the driver’s seat with respect to how their information gets used,” says Bud Tribble, the company’s vice president for software technology.

Mayo’s Case for Medicare Telemedicine Reimbursement

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Dr. Daniel Brown - Mayo

The Mayo Clinic in Rochester says electronic intensive care unit services could pack a bigger punch if lawmakers would bolster Medicare reimbursement. Nurses stand in front of monitors in a small eICU room at the clinic reading vital signs and occasionally calling up video images of patients lying in beds.

All of the 40-some patients cycling across the screens are in intensive care in the Mayo Clinic Health System. But none of them are actually at Mayo.

The clinic’s electronic intensive care unit, known as eICU, is one of the frontiers of telemedicine. Backed by Dr. Daniel Brown, (pictured) Mayo’s chief of critical care, and nurse managers Sarah Bell, Jennifer Meindel and Chad Ditlevson direct the care of very vulnerable patients from afar.

They zoom in remote video cameras to get detailed focus on individuals. They watch blood pressure numbers and respiration. They talk to patients. If they need to insert a breathing tube or reinflate a collapsed lung, they contact doctors and nurses at the hospitals where the patients are located and tell them what to do. They also listen to feedback on how patients are progressing.

But even as they deliver intensive care in hospitals that could not otherwise provide it, government and private health insurance companies are not reimbursing them.

“Medicare pays me if I’m at the bedside,” Brown explained. “They will not pay for telemedicine.”

So Mayo absorbs the cost of providing the service to seven hospitals that are part of the Mayo Clinic Health System.

Mayo’s Medicare reimbursement issue is representative of a national dilemma. Health care payment policies often lag cost-saving advances in technology by many years.

“Medicare reimbursement for telehealth is kind of stuck in the 1990s,” said Randy Schubring, Mayo’s public policy manager.

Telehealth is another name for telemedicine, but whichever term you choose, Medicare’s stance is critical because the government program that offers health insurance to Americans over 65 sets the trend for the private insurance market. Although a few private insurers such as Minnetonka-based UnitedHealthcare have stepped up telemedicine coverage, most of the private sector will follow Medicare’s lead.

That’s why the lack of deadlines in “21st-century cures” legislation winding its way slowly through Congress has become a disappointment to institutions like Mayo. Its leaders believe they have demonstrated the effectiveness of telemedicine.

To others the jury is still out.

Telemedicine for certain services is “equivalent to face-to-face treatment,” said University of Minnesota Prof. Stuart Speedie, director of the Great Plains Telehealth Resource and Assistance Center. “There are still questions about whether telemedicine leads to cost savings.”

New legislation that orders the Centers for Medicare and Medicaid Services to draw up plans to pay Medicare benefits for telemedicine is open-ended. The telemedicine language in a House bill directs Medicare regulators to come up with a list of telemedicine services that will be covered by Medicare a year after the bill’s approval.

The House has not voted on that bill and the Senate is not expected to take up 21st-century cures legislation until later this year. It is hard to say how much longer old reimbursement rules will apply. It could be years.

Mayo will remain a financial powerhouse without extended Medicare coverage of telemedicine. In 2014, the clinic posted income from operations of $834.3 million, up 36 percent from 2013.

But to Mayo and other health care innovators across the country, telemedicine will play an increasingly major role in the future of effective and affordable health care. They think federal policies which recognize that fact make more sense than forcing care providers to overcome licensing restrictions as well as payment restrictions as they remotely treat ICU patients, remotely diagnose strokes, remotely direct the delivery of babies and remotely monitor patients in real time in their homes.

Twenty-seven states, including Minnesota, have passed individual laws requiring insurance coverage of telehealth services. But those laws cannot compel Medicare to change its telemedicine reimbursement policies, Speedie said.

As a result, hospitals outside the Mayo health system pay a subscription fee for Mayo’s telestroke diagnosis, while the clinic picks up the tab for those within its health system.

Mayo began paying for the eICU in August 2013. The service now extends to 95 beds in seven Mayo Clinic Health System hospitals in Minnesota, Wisconsin and Georgia. It will soon grow to 101 beds at eight facilities when a hospital in Red Wing, Minn., comes aboard.

From a care delivery perspective, the scope of eICU services around the country and the world is limited only by the existence of reliable, secure information technology networks, Brown said. Health care facilities in the Middle East have approached Mayo about extending the service there.

But as a practical matter, eICU’s broader application lives and dies at the will of Medicare and U.S. health insurers who follow its lead.

“It takes a longer vision than what some people in the health care community have,” Brown said. “It’s kind of shortsighted what’s happening now.”

Connected care:

Medicare currently reimburses only for a limited number of telehealth services and then only when patients receiving it live in an officially defined “Health Professional Shortage Area” or a county outside of a Metropolitan Statistical Area. The treatment also has to take place in a medical facility. Medicare will not pay if it takes place in a patient’s home.

“Limited reimbursement continues to be a major barrier to the expansion of telehealth,” the Robert J. Waters Center for Telehealth & e-Health Law reported in 2011. “This barrier may preclude timely, quality, appropriate care for patients throughout the nation.”

Mayo and institutions around the country claim that Medicare policies stymie their efforts to provide what they call “connected care.” This includes using technology to extend care to patients in ways that keep them healthy, but reduce expensive trips to the doctor or the hospital.

This isn’t just for people living in some rural outpost,” said Mayo connected care director Dr. Steve Ommen, who testified on the issue to the Senate Special Committee on Aging in the fall of 2014.

Connected care extends beyond eICUs or “telestroke diagnosis” to such things as sharing electronic medical records, video consultations between doctors at different facilities and the use of more wearable devices by patients. It embraces a broad concept of prevention “so patients don’t just come in when the wheels fall off,” Ommen explained.

Medicare may require congressional empowerment to wrap its arms around the broad concept of telemedicine, he added, because regulators write rules, not laws.

House leaders have not done that, according to the American Telemedicine Association, an industry trade group. In May, the association’s CEO, Jonathan Linkous, predicted that the current House proposal to study which telemedicine services should receive Medicare coverage could “delay any action for years.”

Getting doctors licensed to practice telemedicine in several states is another sticking point. The Department of Veterans Affairs has national licensing for physicians, but telemedicine practitioners don’t have that option.

What people like Linkous and Ommen say they want is a nod to the future instead of the past.

Said Ommen: “To those of us involved in telemedicine, it is inevitable that we will practice this way.”

‘Carrying on as usual’

When she ran into complications delivering babies as a midwife in rural Scotland decades ago, Jessie Todd dialed a telephone number for an ambulance crew known as “the flying squad.” She finds the notion of Mayo directing deliveries from iPad images projected over the Internet “fantastic.”

Todd, 80, offers her observation as she walks around her Rochester home. She wears a monitor that records her health information and ships it to a company that immediately passes any suspicious readings on to Mayo for near-instant analysis by technicians sitting in a room full of computer monitors. The technicians measure what’s happening to Todd against a protocol that tells them whether to refer the situation up a medical chain of command that can lead to immediate intervention when necessary.

Todd welcomes the technology. She has not gotten a bill or a notice of insurance coverage yet, so she doesn’t know what her share of the costs will be. Meanwhile, she hopes the data collected at her home will allow doctors to figure out why she’s had a series of ministrokes.

Whether or not it does, the monitor has left her “quite confident that this is taking care of any problems that erupt.”

I’ve been carrying on as usual,” she said. “I have two children and five grandchildren. I just had all of them over for dinner and had no problems.”

This is what Dr. Peter Brady, a British-trained cardiologist who directs Mayo’s Electrocardiographic, Heart Rhythm and Physiological Monitoring Laboratory, has in mind.

At first, he focused his efforts in getting electrocardiograms read quickly for inpatients at Mayo.

“We have a turnaround time of less than 20 minutes,” he said. “We have saved lives with that.”

Now, technicians remotely track a number of other signs of physical health among the hospital’s patients. But they are also extending that analysis beyond the institution’s physical space to places like Todd’s house.

The greatest challenge is not gathering information, Brady said. It is figuring out how to manage it.

“When I speak to physicians about home monitoring, they roll their eyes. We need to organize the avalanche of data that is available in a way they can use it.”

As she looks at a graph of a remote patient’s current heart activity, monitoring lab manager Revelee Kaplan talks about a small device that can be implanted under the skin that continually transmits heart rhythms information for three years.

Nearby, Brady considers this and other advances in remote information gathering and care delivery that he thinks can save lives while letting the health care system save money. Then, he thinks about the way those services are being paid for.

“The technology,” he concludes, “is way ahead of anything in terms of reimbursement.”

Good News, Bad News: Medicare Trustees Report

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Sylvia Burwell & CompanyAs Medicare approached its 50th anniversary, the federal program received some welcome financial news on Wednesday, July 22, 2015: its giant hospital trust fund will be solvent until 2030, and its long-term outlook has improved, according to a report from the program’s trustees.

But the report warned that several million Medicare beneficiaries could see their Medicare Part B monthly premiums skyrocket by 52 percent in January — from $104.90 to $159.30. Medicare Part B, which is paid for by a combination of federal funds and beneficiary premiums, generally covers physician and outpatient costs.

The huge rate hike is predicted because of a confluence of two factors: Medicare Part B costs increased more than expected last year, and Social Security is not expected to have a cost of living increase next year. By law, the cost of higher Medicare Part B premiums can’t be passed on to most Medicare beneficiaries when they don’t get a Social Security raise. As a result, the higher Medicare costs have to be covered by just 30 percent of Medicare beneficiaries. This includes the 2.8 million Medicare enrollees new to the program next year, 3.1 million Medicare beneficiaries with incomes higher than $85,000 a year and 1.6 million Medicare beneficiaries who pay their premium directly instead of having it deducted from Social Security. An additional 9 million people affected by the higher rates are so called “dual eligibles” — those on Medicare and Medicaid. States pay the Medicare Part B premium for duals.

Medicare Part B premiums are set largely by a complicated formula written into law. The trustees’ predictions on premiums are typically close to the final rates that are announced each fall by the Department of Health and Human Services.

HHS Secretary Sylvia M. Burwell said she will examine her options and make a final decision on rates in October. “Seventy percent of enrollees in Part B will have no change in premiums,” she said at a briefing with other program trustees.

A senior government official, speaking only on background information at a Treasury Department briefing on the report, said the projected premium increase in Part B is “atypical” and noted that outpatient health services were among those services that saw higher than expected costs last year. Another senior government official said Burwell has several “policy options” to lessen the premium increases but would not say what they are.

If the Social Security program determines in the next two months that a cost of living increase is needed for next year, that could diminish the premium hikes because they could be spread over millions more beneficiaries. But currently that is not expected.

Medicare advocacy groups expressed concern about the projected rate increase. Judith Stein, executive director of the Center for Medicare Advocacy, said she is concerned the predicted Medicare Part B premium hike signals that, for many, the program is becoming too expensive.

“I am concerned that people will start to rail against Medicare rather than love it, as they have for 50 years,” Stein said.

John Rother, CEO of the National Coalition on Health Care, a group of major consumer, businesses, health care providers and insurers that seeks to lower costs and improve quality, said the potential premium hike is worrisome.

“An increase of that magnitude is unprecedented and deeply concerning,” said Rother, a former policy chief at AARP, the powerful lobby for older Americans. “This should serve as a wake up call to Congress to get serious about cost containment and affordability in Medicare.”

“We are pleased to see that 70 percent of people with Medicare are expected to have a stable Part B premium, and it is concerning to us that 30 percent could see an increase,” said Stacy Sanders, federal policy director at the Medicare Rights Center. “When the final premium amounts are released, we are committed to educating people about their Part B premium, and most importantly, about the potential availability of [programs] that can help with the cost of the Part B premium.”

The possible huge Medicare Part B premium increase overshadowed a generally positive report about the financial health of the Medicare Part A, which covers hospital costs.

The trustees report noted that the financial health of the program is being helped by factors such as an improved economy, while other factors such as more seniors in private Medicare Advantage are increasing costs. The government pays higher costs for those in Medicare Advantage, which is managed care.

While 2030 remained unchanged as the year that the program’s funds would be exhausted, the report said the program’s long-term outlook was improved. That improvement was largely due to assumptions that health costs will grow at a slower rate after 2050.

In 2014, Medicare provided health insurance coverage to 53.8 million people at a cost of $613 billion – roughly the GDP of Argentina. The average value of the Medicare benefit per enrollee was $12,432, about 2 percent higher than last year.

Medicare turned 50 on July 30 — eligible for its own AARP card — but it is increasingly feeling the strains of retiring baby boomers.

Medicare is adding 10,000 new beneficiaries a day as baby boomers reach age 65. The Obama administration is in the midst of overhauling the way Medicare pays doctors and hospitals to emphasize quality results over the sheer volume of procedures, tests and services. HHS has set a goal of tying 30 percent of payments under traditional Medicare to new models of care by the end of 2016 and an increasing share thereafter.

The trustees report also cautioned that the Social Security Disability Insurance program, which covers 11 million people with disabilities, is projected to become insolvent in the fourth quarter of 2016, unchanged from last year. President Barack Obama has proposed shifting funding from another Social Security trust fund to address the imbalance.

The projected trust fund insolvency doesn’t mean that Medicare is “running out of money.” Even in 2030, when the hospital trust fund is projected for exhaustion, incoming payroll taxes and other revenues will cover 86 percent of program costs.

The Medicare trustees are Sylvia Burwell, HHS Secretary, Jacob Lew, Treasury Secretary and Managing Trustee, Thomas Perez, Labor Secretary and Carolyn Colvin, Acting Social Security Commissioner.

Two other members are public representatives appointed by the president: Charles Blahous III and Robert Reischauer. And, Andy Slavitt, CMS Acting Administrator, is designated as secretary of the board.