Dr. Donald Lindberg: Thirty Years At The Intersection Of Computers, Medicine And Information Sharing
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.This KHN story can be republished for free (details).
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].
Ann Finley has faced a host of challenges since her daughter, Mikayla, came into the world 13 weeks early, weighing barely a pound and a half.
Her daughter, now 12, suffers from asthma, attention-deficit hyperactivity disorder and Asperger’s, an autism spectrum disorder. The multitude of appointments with various specialists Mikayla must see makes scheduling complex and overwhelming.
But one thing Finley doesn’t have to worry about now is keeping up with appointments at Mikayla’s pediatrician’s office in Gainesville. A nurse there tracks Mikayla’s records from specialists and calls Finley when it’s time to come in for a checkup.
“A lot of times, I don’t even know it’s time,” Finley said. “And they’ll call to check up on her, just to see how she’s doing.”
The practice, The Longstreet Clinic, is one of a growing number of primary care providers in Georgia teaming up with insurers, specialists, hospitals and others to improve patients’ health by better overseeing their overall care and, the theory goes, rein in out-of-control health care costs in the process.
Both Longstreet in Gainesville and Emory Healthcare in metro Atlanta have partnered with Blue Cross and Blue Shield of Georgia to do just that. Launched in 2013, a program through Blue Cross is experimenting with paying doctors based on how patients fare rather than the traditional model of reimbursing for every service, test, and office visit. The program, called Enhanced Personal Health Care, has nearly 1,000 providers participating so far.
Similar programs are popping up across the country.This copyrighted story comes from The Atlanta Journal-Constitution, produced in partnership with KHN. All rights reserved.
Insurers like paying doctors based on quality of care versus quantity of services because healthier patients are less expensive to cover. Providers like it because they get paid more for improved patient health. Patients, especially those suffering from chronic diseases like diabetes, benefit from more personalized attention from their doctors.
Critics of the traditional “fee-for-service” model say the outdated system has helped drive up U.S. health care costs far higher than those of other industrialized nations. It’s also led, they argue, to unnecessary tests and lab work that may not really be needed.
The five-year-old Affordable Care Act is helping to accelerate this push toward rewarding providers based on the quality, not quantity, of their care. Under the law, for example, Medicare (the government health program for Americans age 65 and older) is beginning to pay — or penalize — hospitals based on quality of care.
It’s too early to tell conclusively if the partnerships between Blue Cross and providers are succeeding, but early feedback is promising.
Costs have fallen roughly 6 percent among primary care doctors at Emory. The health care system has also seen an about 6 percent improvement in quality measures being tracked.
Insurers and providers sharing information with each other is critical for the Blue Cross program and others like it to work, experts say.
One element that particularly helps is a website with real-time data, said Dr. Christopher Apostol, who practices near Augusta and is participating in the Blue Cross program. It allows a care coordinator in his office to check on what has happened medically with a patient since his or her last visit.
Many practices are also adding care coordinators to further improve the flow of information and to follow up with patients.
When a prescription is ordered, for instance, the coordinator can see whether a patient follows through with filling it. The coordinator can also see when a patient visits another doctor or is admitted to the hospital.
That information gives primary care doctors a more complete picture of patients’ health, particularly those who suffer from chronic illnesses, such as diabetes or hypertension.
“Ninety percent of health care is spent on chronic illnesses, and eighty percent of those are preventable,” said Morgan Kendrick, president of Blue Cross and Blue Shield of Georgia.
The strategy is not only about insurance companies making money but also about containing costs so that people can afford medical care they need, Kendrick added.
Despite some successes, experts say it’s still unclear if the enhanced primary care model can achieve significant savings.
Cost-saving is difficult because while some patients will benefit and end up in the hospital less, others may not need the additional oversight, said David Howard, a health policy expert at Emory University.
“The challenge is to identify which patients do we have to target,” Howard said.
Still, insurers and doctors remain hopeful the approach will help patients stay healthier.
Dr. Jeffrey Reinhardt is seeing some success at The Longstreet Clinic.
The practice has reduced the number of patients readmitted to hospitals and knows if a patient ends up in the emergency department, said Reinhardt, an OB/GYN at the Gainesville practice.
“It gives me the info that I didn’t know about a patient and the ability to take a lot better care of my patients,” he said.
Attorney General Maura Healey is pushing legislation designed to give her office stronger oversight of hospital mergers.
The bill would toughen the authority of the Health Policy Commission when considering mergers of health care providers.
The bill would allow a report issued by the commission to be considered strong enough evidence that the Healey’s office could use it to seek a temporary block of a proposed deal between health care organizations if the deal would force up health care costs.
In January, a Suffolk Superior Court judge rejected a deal that would have allowed Partners HealthCare to merge with South Shore Hospital.
After Healey said she would try to block any future merger, Partners abandoned the plan.
The bill is sponsored by House Majority Leader Ron Mariano, a Quincy Democrat.
By Steve Schlozman, M.D.
When tragedies hit, it is in our nature to ask why. The co-pilot in the horrific Germanwings crash had serious mental health problems, according to reports. How could no one have known how serious his challenges were? How could no one have predicted this terrible outcome? On its surface this line of questioning seems even a bit ludicrous. After all, even in the murky face of mental illness, the potentially deliberate and fatal nose-dive of a commercial aircraft seems impossible to imagine. Nevertheless, this is exactly the question that we’re seeing over and over in the coverage of the crash.
How could we not have known?
The fact is, however, that this particular question glosses over a profoundly uncomfortable quandary that is by no means unique to psychiatry. For all of modern medicine, predictions are surprisingly fraught with difficulty. For all of medicine’s miracles, for all of its technological wonders and advances, medicine remains a quintessentially human endeavor. You might even argue that phrases like “medical miracle” are indeed part of the problem. This more we grant medicine undue and mystical prowess, the more resistant we grow to the grueling trial and error that characterize everyday medical practice. Doctors are wrong all the time. That’s a fact.
Nevertheless, physicians are asked to prognosticate. That’s the verb form of “prognosis.” As patients and families, we look to our doctors daily for prognostic estimates. (Emphasis on estimates.) These estimates are really hypotheses necessarily based on incomplete data. Rare complications and twists of fate befuddle even the best.
For psychiatry this truth can be especially hard to swallow. A neurologist might not be able to predict every migraine, but it is the rare migraine that results in tragedy. Still, remember that psychiatrists cannot read minds. Like all physicians, psychiatrists will try their best to understand what is the cause of suffering. And, as with all clinicians, psychiatrists will sometimes be right and sometimes not. Medicine remains an art even as the science continues to improve.
The fact that someone suffers a psychiatric disorder, even a recurrent psychiatric disorder, is not remarkable when compared to the rest of medicine. The same occurs with ulcers, asthma, allergies, orthopedic injuries, sinus infections and so forth. Most medical illnesses are chronic and many are intermittent. No medical professional can predict with absolute certainty when an episode is going to occur or how severe it may be. To be fair, physicians can and do identify triggers, but the intensity of a presumed reaction is outside anyone’s ability to predict.
And this is where society gets especially flummoxed. No one would argue that the art of medicine is infallible. No one would suggest that medical practice is right 100% of the time. But faced with tragedy, we are much more comfortable as a species pretending that our predictions are foolproof and that our mishaps are exceedingly rare.
Why can’t we always know? Medicine is post-modern. We cannot know because we can’t.
But there are some important factors. There is inherent chaos in the “system.” Actually, there is inherent chaos in any system, but in the systems at work in prognosticating, there are immeasurable moving parts.
There are the whims of a disease that we don’t entirely understand. There’s the darting back and forth of an impulsive mind. There’s the combination of stressors that can feel uniquely intolerable when paired with the poorly understood disease. There are lungs in one person that work different in another.
In other words, there is the always changing interface of our science (which shifts slowly) with ourselves (who change on a dime). We can do our best to control these variables, but of course we can’t control them all. Still, we pretend, at a societal level, that these variables are both known and taken into account. Thus, our cognitive dissonance stems from a series of epistemological missteps. We pretend we know things that we don’t, we tell ourselves that we’re not pretending when we know that we are, and we allow ourselves this delusion because it easier than tolerating the ambiguity of our limits.
There are, of course, some things we do know. For instance: a depressed man crashing a plane is rare. When compared to the number of pilots, and stacked against the statistical reality of the rate of depression, we need to remember that even depressed pilots virtually never fly noticeably worse.
While we really don’t and cannot know what moved the Germanwings pilot to apparently deliberately crash his plane, even if the route cause was mental illness, it would be grossly unfair to say that all pilots with mental illness are unfit to fly.
So what’s the biggest risk to medical prognosis? It’s not poorly trained doctors. It’s note even the ebbs and flows of normal medical variability.
It is the risk of forgoing human relationships and succumbing instead to blind assumptions and diminished connections. A parent, spouse, mental health professional, or primary care doctor is often in the best possible position to know how another person thinks, feels and behaves. A close, long-term relationship improves the likelihood of an accurate hypothesis. This is why continuity of care and relationships are so important. This is also where family members and mental health professionals find themselves engaged in painful second-guessing. Did I miss something, we ask ourselves. Were there signs that I failed to notice?
These are incredibly important questions to ask, but not as indictments or self-criticisms. We learn to ask these questions so that we can make sense of what happens and has happened, and we use this process to remind ourselves that events often only become clear after the fact instead of before. We learn to recognize change in those who are close to us. We learn and do our best to know when changes need intervention. We hope we can see the bad things coming.
But what do we do when see change? What are the interventions? As E.M. Forster famously advised: “Only connect.” Connect the prose and the passion, he told us. In other words, transfer your worry into words. Ask you loved one how he or she’s doing? Find out if life appears to be losing its value. Don’t mince words. There’s no evidence at all that asking someone if they’ve thought of hurting themselves is more likely to make them do so. In fact, there is ample evidence to the contrary.
Alas, however, nothing is 100% certain. There will always be individuals who defy predictions, who baffle expectations, who hide and say they are fine when they’re not, who flummox the art of prognosis. This caveat is so very important to remember. For family members especially, this is not an invitation for self-critical appraisal. This is a reminder that we humans just can’t be 100% accurate. It is in fact this fundamental uncertainty of the human condition that we often find most troubling. We just can’t always know.
Dr. Steve Schlozman is an assistant professor of psychiatry at Harvard Medical School and Associate Director at the Clay Center for Young Healthy Minds at Massachusetts General Hospital.
In November 2013, the American Civil Liberties Union of Missouri filed a motion on Flynt’s behalf. This was one of several efforts to gain information about the state’s execution protocol.
Flynt, who was paralyzed in 1978 by Joseph Franklin, had advocated that Franklin should be punished by spending the remainder of his life in prison, rather than be killed by the state and put out of his misery. Missouri executed Franklin Nov. 20, 2013. Missouri Press Association and several other media organizations filed friend of the court briefs in support of Flynt.
Court documents for Larry Flynt v. Lombardi can be found on the ACLU of Missouri website.
"The public needs to know what is being done in its name and these judicial records will answer a lot of questions that we and members of the media have been asking," explains Tony Rothert, legal director of the ACLU of Missouri.
"The ACLU plays a unique role by working through the courts to ensure the public has access to the information we need to be an effective check on government power," said Jeffrey Mittman, executive director of the ACLU of Missouri. "A state’s execution protocol should never be hidden from the public by sealing court documents. When Missouri kills people in our name, the public must know if the manner is ethical, or cruel and unusual."
The ACLU of Missouri is a non-partisan, not-for-profit organization that defends and expands the constitutional rights and civil liberties of all Missourians guaranteed under the United States and Missouri Constitutions, through its litigation, legislative and public education programs. It is an affiliate of the national ACLU.
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.This KHN story also ran on NPR. It can be republished for free (details).
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.