Computers are everywhere in medicine. If you have an operation, your surgeon might study the best practices online before the procedure. If you are diagnosed with a difficult-to-treat cancer, chances are your doctor will use an online database to find an appropriate clinical trial.  And, if you develop a rash, you’ll probably use the Internet to find out what it might be.

Donald Lindberg, the outgoing director of the National Institutes of Health National Library of Medicine, had a hand in making these resources widely available. Since he joined the NLM in 1984, he saw the promise in putting research online so that doctors could have the latest medical advancements at their fingertips. And he wanted that same option for patients as they’ve become increasingly engaged in navigating their own care.

“When I first arrived at NLM, I didn’t come prepared to change anything, but technology was changing all around all of us,” Lindberg said. “We’ve had to make major changes or else we would have become obsolete.” The National Library of Medicine, which is the world’s largest medical library, was founded in the 1800s and initially sent out a monthly guide to medical research. As technology has evolved, so have the methods the library uses to disseminate information to patients and providers.

He still remembers his early days at NIH, when information-sharing technology involved phone companies and point-to-point transmissions. But the advent of computers and the World Wide Web changed all of that.

Lindberg, who pioneered the first use of computers in medicine in the 1960s, was involved during his 30-year tenure with almost every government-funded sorting initiative of new and old medical information — the 1998 creation of Medline Plus for consumers to find out general medical information; the 1997 creation of Clinicaltrials.gov, the largest global registry for these types of studies; and the management and installment of Visible Humans, an online library of digital images based on the anatomy of a man and woman.

Lindberg, who retired April 1, recently spoke with KHN’s Lisa Gillespie about his NLM experience and what he thinks is next on the horizon. An edited transcript of their conversation follows.

Q:  What are some of the biggest changes that took place during your time at NLM and shaped the experience of being a doctor or patient?

A:  The introduction of computer interpretation of EKGs in the study of the heart was one piece of pavement in the road of success for computers. That was greeted pretty much with support from patients and doctors, though doctors were [also] concerned in making sure the stuff was right. I would say most are not experts [in interpreting this technology], especially in the case of general practitioners. It was a big deal for a computer to do that, and it was rapidly accepted.

Q:  You were involved in the creation and roll out of many systems to help doctors and patients. Which ones have made the greatest impact?

A:  Medline Plus, a database that tells you things like what chemicals and drugs get into mother’s milk, has had a lot of influence. If you’re lactating, it is of great interest. The major change in our whole field was Human Genome Project. That project has produced millions and even billions of facts that would only achieve meaning if they were put together to answer questions, [which was done through Medline Plus].

A very current one is clinicaltrials.gov.  [The concept] started at the National Institutes of Health, and even there, if you asked “how many clinical trials are going on?” there was no answer. There wasn’t even a list. We were surprised to discover that. … Everyone agreed there should be records [of trials]. In Israel, for instance, they saw what we were doing and said it was going to take too much money to do it [themselves], so they started putting their records in our system. Clinicaltrials.gov now has 150,000 trials [listed in the global database].

Q:  As NLM created and implemented computer applications, did health care providers shape what information was shared and how technology was used?

A: At one point, I was trying to do things the nurses would like. The chief of nursing came to me and said the computer was a wonderful thing. I asked her what she liked about it, and she said, “well, it’ll give me an alphabetized list of names on the ward.” That’s not a great accomplishment, but it’s what they wanted. We tried to keep our eyes out for things like that.

Q:  What are the biggest technological innovations you’ve seen?

A:  The idea of telemedicine is a very powerful one, and it’s been with us for a long time. Once we get improved gear [for its use], there will be a new application that I couldn’t have thought of. Take tele-dermatology. There aren’t enough experts. …  So the basic idea is that once you have digital cameras, you send [case information] to an expert who will look at it and give an opinion. A dermatologist told me once about a patient who had obvious dermatitis problems and had spent five years going to doctors who couldn’t treat it. The guy was unemployable because his condition was so severe that he couldn’t move around. And it got cured [using telemedicine].

Q:  What are your predictions for the future? Especially at the NLM?

A:  The idea of the informed patient will dominate changes. You can’t underestimate patients. [Now] versus when I got started … they’re willing to participate in medical-decision making. Back then, patients didn’t want an active role in their own management. Smart doctors now encourage it. That will make a big difference. Now they [are starting to] understand prevention … and they’ll understand end-of-life care. How aggressive the treatment is should be based on the patient’s wishes, but they have to understand [the choices].

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Low-income consumers whose earnings fluctuate or family circumstances change over the course of the year risk losing their health coverage if they shift between eligibility for Medicaid and coverage on the health insurance exchanges. That “churning” isn’t new to Medicaid, but the health law’s addition of millions of customers whose incomes hover near the Medicaid line raises concerns about how well the insurance marketplaces can handle the flux.

The health law aims to minimize churning by making the state marketplaces a one-stop shop for both types of coverage. That’s still a work in progress, but some states are ahead of the curve in employing strategies to help ensure people don’t fall through the cracks.

Last year, when Jillian Naccache took in a roommate at her Bellingham, Wash., house, the extra money pushed her income above 138 percent of the federal poverty level ($16,105 for an individual), making her no longer eligible for Medicaid. (So far, 28 states and the District of Columbia have extended Medicaid coverage to adults with incomes below that threshold as allowed under the health law.)

Naccache, 39, logged onto the state health insurance exchange to report her income change and picked a health plan. Based on her estimated income for the year, she received a monthly premium tax credit of $192, reducing the amount she owed to $128.

A few months later the roommate moved out and her income dropped back below the Medicaid threshold. Naccache logged onto the state marketplace again to report the change and was re-enrolled in the Medicaid program.

The process wasn’t entirely seamless: When she went back on Medicaid, Naccache wound up paying an extra month’s premium on the private market when the two types of coverage overlapped. But switching back and forth was mostly simple, she says.

“It cost me a bit more money, but that was better than having a gap in coverage,” Naccache says.

Washington has made good progress in realizing the health law’s vision of a single online portal for consumers to enroll in marketplace plans and get financial subsidies or sign up for Medicaid, says Matthew Buettgens, a senior research associate at the Urban Institute who has written about how to minimize churning.

“In Washington state, the enrollment and eligibility interface between Medicaid and qualified health plans [sold on the exchange] was integrated from the start,” he says.  “That’s very unusual.”

Among the other 14 state-based marketplaces, New York, Rhode Island and Kentucky also stand out for their efforts to integrate Medicaid and exchange plan data and information technology, says Heather Howard, director of the State Health Reform Assistance Network, a program that provides technical assistance to help states implement the health law.

Such integration is more complicated when the federal government is running the state’s marketplace, experts say. After a rocky beginning, integration in those states appears to be improving, says Tricia Leddy, senior fellow for state health care programs at the Center for Health Care Strategies.

In the Medicaid and Children’s Health Insurance Programs, where eligibility changes depending on income and family size, churning is not uncommon. Adding subsidized health insurance on the exchanges to the process expands the possibilities for churn. According to an analysis by Buettgens, 7 million people could churn between Medicaid and exchange coverage annually.

Now that the exchanges have concluded their first year, most states are just beginning to turn their attention to the problem of churn, experts say. Data is scarce. Washington is one of the few states that has reported any figures. Between April 2014 and March 2015, 20,078 people who were enrolled in coverage on the Washington state exchange moved into Medicaid, while 13,190 Medicaid enrollees moved into the exchange.

At the beginning of March, there were 691,930 people enrolled in Medicaid and private plans through the health benefit exchange.

The state is researching who is churning and why, says Mary Wood, assistant director at the Medicaid agency’s division that handles eligibility, policy and service delivery.

Another strategy to reduce harm caused by churn is to ensure that people’s insurance coverage and provider networks are similar whether they’re on Medicaid or an exchange plan.

When Naccache’s coverage changed, her doctors remained the same, she says.

In Washington state, three out of the five Medicaid managed care plans sell comparable plans on the exchange, says Wood. That may reduce customer problems finding in-network doctors and hospitals.

Some states have adopted a “basic health program” as permitted under the health law. They offer health coverage similar to that on an exchange for people with incomes up to 200 percent of the federal poverty level, reducing the magnitude of churn between Medicaid and exchange plans.

Consumer advocates say that efforts to integrate IT and align plans on both sides of the line may fall short if simple enrollment timing issues aren’t addressed.

Naccache ended up paying for an extra month of exchange coverage during the transition back to Medicaid. That’s a tough financial hit, but advocates are more concerned about the possibility that people’s coverage will lapse while they’re changing plans. Unlike Medicaid, where coverage can be retroactive to when someone became eligible, exchange coverage doesn’t work that way.

In order to have marketplace coverage on the first of the month, people have to sign up for a plan by the 23rd of the previous month in Washington. In some cases people are learning that they’re eligible for a marketplace plan too late to do so, says Janet Varon, executive director of Northwest Health Law Advocates.

When that happens, “People are having coverage gaps of a month,” says Varon. Although coverage is restored, any break is problematic, advocates say.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

By law, many U.S. insurance providers that offer mental health care are required to cover it just as they would cancer or diabetes treatment. But advocates say achieving this mental health parity can be a challenge. A report released last week by the National Alliance on Mental Illness found that “health insurance plans are falling short in coverage of mental health and substance abuse conditions.”

Jenny Gold of Kaiser Health News spoke with NPR’s Arun Rath over the weekend about the issue. She noted that many patients have trouble getting their mental health care covered, and she outlined some of the issues confronting both patients and the insurance industry. Here is an edited transcript of her comments.

Where does parity stand?

It’s been a mixed bag so far. Insurance companies often used to have a separate deductible or a higher copay for mental health and substance abuse visits. That’s sort of gone away. For the most part, insurers really have complied. Right now, there usually isn’t a separate deductible for mental health or a higher copay. So on that side, insurers really have complied.

But on another, more subtle side, advocates are saying they’re really not complying. For example, insurance companies, in order to keep down costs, will do things called “medical necessity” reviews. Basically, they look at someone’s care and ask is it really medically necessary. Advocates say they’re applying those sorts of cost-control techniques more stringently on the mental health side and the substance abuse side than they are on the physical health side. So people are still having trouble getting their care covered.

For insurers, isn’t it legitimate to say that it’s more difficult to say something is medically necessary when we’re talking about mental health?

Insurance companies are arguing this is a really hard law to implement. Clare Krusing, a spokeswoman for America’s Health Insurance Plans, the insurance industry’s main trade group, says the plans are doing their best to make this work.

“The plans have made tremendous steps since the final rules have come out to implement these changes and requirements in a way that is affordable for patients,” Krusing said. “And again this goes back to the fact that we are at a point where health care costs continue to go up.”

She also said that it’s hard to compare mental and physical health care, that those are two really different things, sort of apples and oranges. It’s hard to make them exactly equal when treatment often doesn’t line up, she said, and success can be harder to measure on the mental health side.

How are things going for patients?

Advocates, patients, lawyers alike say it’s not going well for patients and that we’ve got something that looks like mental health parity in name only. A National Alliance on Mental Illness poll found that consumers said they were twice as likely to get their mental health care denied than their medical care, which suggests that insurance companies still aren’t equating the two.

Carol McDaid, an advocate who runs the Parity Implementation Coalition, noted that her group has a helpline to take complaints from people who are having trouble getting their care covered. “They end up with this perception that they have access to care, but when they’re in a crisis for themselves or their loved one, lo and behold, the care’s not available because of these cost-control techniques,” McDaid said.

Do patients know what their rights are?

It’s really hard for people to bring a complaint. In order to prove there’s been a violation, you actually have to look at how an insurance company makes decisions on the mental health side and then compare it to how they make determinations for medical and surgical treatments. And insurance companies often won’t give up those documents to be analyzed.

In addition, for a consumer to make a complaint, it means they have to come forward and admit on some level that they have a mental illness. There’s still a lot of stigma about these conditions. Sometimes it’s hard for people to step forward, especially when it means telling their employers.

How are states and groups reacting?

There are a handful of states that are taking some enforcement actions, including New York, which has made some settlements with insurance companies, and California. Also, there are quite a few individual and class action lawsuits against insurance companies alleging that they are violating mental health and substance abuse parity law. And so that may end up being the way it starts getting enforced.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Dr. Michael Kitchell initially welcomed the federal government’s new quality incentives for doctors. His medical group in Iowa has always scored better than most in the quality reports that Medicare has provided doctors in recent years, he said.

But when the government launched a new payment system that will soon apply to all physicians who accept Medicare, Kitchell’s McFarland Clinic in Ames didn’t win a bonus. In fact, there are few winners: out of 1,010 large physician groups that the government evaluated, just 14 are getting payment increases this year, according to Medicare. Losers also are scarce. Only 11 groups will be getting reductions for low quality or high spending.

“We performed well, but not enough for the bonus,” said Kitchell, a neurologist. “My sense of disappointment here is really significant. Why even bother?”

Within three years, the Obama administration wants quality of care to be considered in allocating nine of every 10 dollars Medicare pays directly to providers to treat the elderly and disabled. One part of that effort is well underway: revising hospital payments based on excess readmissions, patient satisfaction and other quality measures. Expanding this approach to physicians is touchier, as many are suspicious of the government judging them and reluctant to share performance metrics that Medicare requests.

“Without having any indication that this is improving patient care, they just keep piling on additional requirements,” said Dr. Mark Donnell, an anesthesiologist in Silver City, N.M. Donnell said he only reports a third of the quality measures he is expected to. “So much of what’s done in medicine is only done to meet the requirements,” he said.

The new financial incentive for doctors, called a physician value-based payment modifier, allows the federal government to boost or lower the amount it reimburses doctors based on how they score on quality measures and how much their patients cost Medicare. How doctors rate this year will determine payments for more than 900,000 physicians by 2017.

Medicare is easing doctors into the program, applying it this year only to medical groups with at least 100 health professionals, including doctors, nurses, speech-language pathologists and occupational therapists. Next year the program expands Medicare to groups of 10 or more health professionals. In 2017, all remaining doctors who take Medicare—along with about 360,000 other health professionals—will be included. By early in the next decade, 9 percent of the payments Medicare makes to doctors and other professionals would be at risk under a bill that the House of Representatives passed in March.

The quality metrics used to judge doctors vary by specialty. One test looks at how consistently doctors keep an accurate list of all the drugs patients were taking. Others track the rate of complications after cataract surgery or whether patients received recommended treatments for particular cancers.

There are more than 250 quality measures. Groups and doctors must report a selection —generally nine, which they choose — or else be automatically penalized. This year, 319 large medical groups are having their reimbursements reduced by 1 percent because they did not meet Medicare’s reporting standards.

Physicians who do report their quality data fear the measures are sometimes misguided, usually a hassle and may encourage doctors to avoid poorer and sicker patients, who tend to have more trouble controlling asthma or staying on antidepressants, for instance.

Dr. Leanne Chrisman-Khawam, a primary care doctor in Cleveland, said many of her patients have difficulty just getting to follow-up appointments, since they must take two or three buses. She said those battling obesity or diabetes are less likely to reform their diets to emphasize fresh foods, which are expensive and less available in poor neighborhoods. “You’re going to link that physician’s payment to that life?” she asked.

Dr. Hamilton Lempert, an emergency room doctor in Cincinnati, criticized one measure that requires him to track how often he follows up with patients with high blood pressure.

“Most everyone’s blood pressure is elevated in the emergency department because they’re anxious,” Lempert said. Another metric encourages testing the heart’s electrical impulses in patients with non-traumatic chest pain, which Lempert said has led emergency rooms to give priority to these cases over more serious ones.

“It’s just very frustrating, the things we have to do to jump through the hoops,” he said.

In their first year doctors are affected by the program, they can choose to forgo bonuses or penalties based on their performance. After that, the program is mandatory. This year, 564 groups opted out, but even if all of them had been included, only 3 percent would have gotten increases and 38 percent would have seen lower payments, mostly for not satisfactorily reporting quality measures, Medicare data show.

Smaller groups and solo practitioners are even less likely to report quality to the government. “The participation rates, even though it’s mandated, are just really low,” said Dr. Alyna Chien, an assistant professor at Harvard Medical School. It’s “a level of analytics that just is not typically built into a doctor’s office.”

Dr. Lisa Bielamowicz, chief medical officer of The Advisory Board, a consulting group, predicted more doctors will start reporting their quality scores when the prospect of fines is greater. “They are not going to motivate until it is absolutely necessary,” she said. “If you look at these small practices, a lot of them just run on a shoestring.”

This year’s assessments of big groups were based on patients seen in 2013. A total of $11 million of the $1.2 billion Medicare pays doctors is being given out as bonuses, which translates to a 5 percent payment increase for those 14 groups getting payment increases this year. That money came from low performers and those that did not report quality measures to Medicare’s satisfaction; they are losing up to 1 percent.

The exact amount any of these groups lose will depend on the number and nature of the services they provide over the year. This year, 268 medical groups were exempted because at least one of their doctors was participating in one of the government’s experiments in providing care differently.

Officials at the Centers for Medicare & Medicaid Services declined to be interviewed about the program but said in a prepared statement that they have been providing all doctors with reports showing their quality and costs. “We hope that this information will provide meaningful and actionable information to physicians so that they may improve the coordination and integration of the health care provided to beneficiaries,” the statement said.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.