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Big data, In the News, Patient Care, Pediatrics, Stanford News

Examining the potential of big data to transform health care

Examining the potential of big data to transform health care

Back in 2011, rheumatologist Jennifer Frankovich, MD, and colleagues at Lucile Packard Children’s Hospital Stanford used aggregate patient data from electronic medical records in making a difficult and quick decision in the care of a 13-year-old girl with a rare disease.

Today on San Francisco’s KQED, Frankovich discusses the unusual case and the potential of big data to transform the practice of medicine. Stanford systems-medicine chief Atul Butte, MD, PhD, also weighed in on the topic in the segment by saying, “The idea here is [that] the scientific method itself is growing obsolete.” More from the piece:

Big data is more than medical records and environmental data, Butte says. It could (or already does) include the results of every clinical trial that’s ever been done, every lab test, Google search, tweet. The data from your fitBit.

Eventually, the challenge won’t be finding the data, it’ll be figuring out how to organize it all. “I think the computational side of this is, let’s try to connect everything to everything,” Butte says.

Frankovich agrees with Butte, noting that developing systems to accurately interpret genetic, medical or other health metrics is key if such practices are going to become the standard model of care.

Previously: How efforts to mine electronic health records influence clinical care, NIH Director: “Big Data should inspire us”, Chief technology officer of the United States to speak at Big Data in Biomedicine conference and A new view of patient data: Using electronic medical records to guide treatment

Cancer, Clinical Trials, In the News, NIH, Patient Care, Research

National Cancer Institute looking for “Exceptional Responders”

OLYMPUS DIGITAL CAMERAHope is a powerful force in cancer treatment. For patients and their families, the hope is that, no matter how unlikely, the treatment plan will cure the patient and eradicate the disease. Sadly, this is sometimes a long shot. But sometimes, against all odds, the therapy is unusually successful. Now the National Cancer Institute is trying to learn why.

This week the institute launched a study into the phenomena of “Exceptional Responders” – that is, cancer patients who have a unique response to treatments (primarily chemotherapy) that have not been effective for most other patients. As they describe in a Q&A about the effort:

For this initiative, exceptional responders will be identified among patients enrolled in early-phase clinical trials in which fewer than 10 percent of the patients responded to the treatments being studied; patients who were treated with drugs not found to be generally effective for their disease; patients who were treated in later-phase clinical trials of single agents or combinations; and even patients who were treated with established therapies. In this pilot study, malignant tissue (and normal tissue, when possible) and clinical data will be obtained from a group of exceptional responders and analyzed in detail. The goal is to determine whether certain molecular features of the malignant tissue can predict responses to the same or similar drugs.

The researchers would like to obtain tumor samples, as well as normal tissue, from about 100 exceptional responders. They’ll compare DNA sequences and RNA transcript levels and other molecular measurements to try to understand why these patients were such outliers in their response to treatment. In at least one previous case, an exceptional responder with bladder cancer led researchers to discover a new molecular pathway involved in the development of the disease, and suggested new therapeutic approaches for other similar patients.

Do you know someone who might qualify for the study? More from the Q&A:

Patients who believe they may be exceptional responders should contact their physicians or clinical trialists to see if they can assist in submitting tissue for consideration. [...] Investigators who have tissue from a potential exceptional responder should send an email to NCIExceptionalResponders@mail.nih.gov. The email should include a short description of the case, without patient identifiers; information about whether tissue collected before the exceptional response is available; whether informed consent was given to use tissue for research; and the patient’s vital status.

Photo by pol sifter

Patient Care, Research, Technology

How can health-care providers better leverage social media to improve patient care?

How can health-care providers better leverage social media to improve patient care?

A growing number of Americans are turning to the Internet for health information and many are using social media tools to engage with patients like themselves or health-care providers. But findings recently published in the Journal of Medical Internet Research suggests that a significant portion of the health-related content on social networking sites is irrelevant or devoted to marketing or promotion of products, events and institutions. Study authors also warned that social media can quickly spread misinformation to a broad audience.

In the study, Stanford medical student Akhilesh Pathipati and colleagues analyzed Facebook search results for common medical conditions. Pathipati explains in a Sacramento Bee opinion piece how health-care providers can adopt social media strategies to address the  concerns mentioned above. He writes:

Providers should build online support systems that reach all patients. A PricewaterhouseCoopers poll found that 40 percent of respondents would use social media to cope with chronic medical conditions. If patients are embarrassed by having a stigmatized illness though, they may lack that coping mechanism.

In the short term, providers may want to set up private groups on social networking sites in which patients can interact with other affected individuals. Setting up an anonymous network may prove to be even more useful, as anonymity has been shown to help people share more about their health. The long-term goal should be to find ways to reduce the stigma associated with certain illnesses.

Previously: Lack of adoption of social media among health-policy researchers = missed opportunity, More reasons for doctors and researchers to take the social-media plunge and A reminder to young physicians that when it comes to social media, “it’s no longer about you”

Events, Medicine and Literature, Medicine and Society, Patient Care, Stanford News

Abraham Verghese discusses stealing metaphors and the language of medicine at TEDMED

Abraham Verghese discusses stealing metaphors and the language of medicine at TEDMED

Abraham Verghese TEMED

Few of us pay close attention to metaphors used in the language of medicine. Instead, our focus is typically on words relating to symptoms, test results and diagnoses. But as Stanford physician and author Abraham Verghese, MD, explained last week at TEDMED in San Francisco (which was co-sponsored by Stanford Medicine), metaphors, particularly as they relate to medicine, are significant because “they explain our past… [and] share our present and, perhaps most importantly, the metaphors we pick predicate our future.”

Verghese took conference attendees through a “grand romp through medicine and metaphor” during a session titled “Stealing Smart,” which featured seven speakers and their stories on how stealing something from another field, such as the principles of video game design, could improve medicine. As a child with “no head for math,” Verghese was drawn to the written word and developed a love for metaphors. His physical and metaphorical journey into medicine originated with his childhood reading and, as he sheepishly admitted, his reading list “had a certain prurient bias.” In fact, he selected the novel that set the course of his life, Of Human Bondage by W. Somerset Maugham, because the title “had great promise.” Despite it’s lack of salacious content, the book made a lasting impression on Verghese.

He recalled reading about how the protagonist, a boy named Philip who was born with a clubfoot, overcame great adversity to become a physician. The character was intrigued at the variety of patients he meets in the wards of the hospital and marvels at their willingness to open up about their personal lives at a time of distress. In describing the doctor-patient relationship, the author writes, “There was humanity there in the rough.” Those words spoke deeply to young Verghese and “implied to [him] that not everyone could be a brilliant engineer, could be a brilliant artist, but anybody with a curiosity about the human condition, with a willingness to work hard, with an empathy for their fellow human being could become a great physician.” He added, “I came into [the profession] with the sense that medicine was a romantic passionate pursuit. I haven’t stopped feeling that way, and for someone who loved words anatomy was such fun.”

Verghese reveled in the abundance of medical metaphors throughout his training. The prevailing metaphor in anatomy was that of a house, while the overarching metaphor of physiology was that of a machine. When it came to describing symptoms, there was no shortage of metaphors: the “strawberry tongue” associated with scarlet fever, the “peau d’orange” appearance of the breast in breast cancer and the “apple-core” lesion of colon cancer. “That’s just the fruits – don’t get me started on the non-vegetarian stuff,” he joked.

But all of the metaphors noted in his talk are 60-100 years old, and when it came to naming one from more recent times Verghese was at a loss. He said:

In my lifetime, and I suspect in yours, we’ve seen so many new diseases – AIDS, SARS, Ebola, Lyme… We have so many new ways at looking inside the body and scanning the body, such as PET and MRI, and yet, strangely, not one new metaphor, that I can think of… It’s a strange paucity because we are so imaginative. The amount of science that has been done in the last 10 years eclipses anything that was done in the last 100 years. We’re not lacking in imagination, but we may be lacking in metaphorical imagination.

This dearth of metaphor has two consequences, he said. The first is that Congress isn’t funding biomedical research to the level that is necessary to advance new discoveries and treatments. The second is that patients are “not as enamored with our medicine and our science as we might think they should be,” he said. Verghese implored the audience to “create metaphors befitting our wonderful era discovery.” He encouraged those in the crowd and watching the livestream online to accept this challenge, saying, “I want to invite you to name things after yourself. Go ahead! Why not?”

As he closed the talk, Verghese shared the metaphor that has guided his life by saying:

It’s the metaphor of a calling. It’s the metaphor of a ministry of healing. It’s the metaphor of the great privilege we’re allowed, all of us with anything to do with health care, the privilege of being allowed into people’s lives when they are at their most vulnerable. It’s very much about the art of medicine. And we have to bring all the great science, all the big data, all the wonderful things that we’re going to be talking about [at this conference] to bear one human being to another… We have to love the sick. Each and everyone of them as if they were our own. And you know what? They are our own, because we are all humanity there in the rough.

Previously: Abraham Verghese urges Stanford grads to always remember the heritage and rituals of medicine, Inside Abraham Verghese’s bag, a collection of stories and Stanford’s Abraham Verghese honored as both author and healer

Emergency Medicine, Health Policy, In the News, Patient Care, Research, Stanford News

Exploring how the Affordable Care Act has affected number of young adults visiting the ER

Exploring how the Affordable Care Act has affected number of young adults visiting the ER

ER sign - 560

One of the earliest – and most popular – parts of the Affordable Care Act allowed young adults to stay on their parents insurance until their 26th birthday. This week, Stanford researchers led by Tina Hernandez-Boussard, PhD, published a paper in the journal Health Affairs that tracked emergency room visits in California, New York and Florida for two age groups: 19 to 25 year olds – the group affected by the new requirement -  and 26 to 31 year olds for comparison. The researchers examined ER visits for the two years prior to the ACA requirement (2009 and 2010) and one year after the requirement went into effect (2011). Their findings showed that in 2011, 19- to 25-year-olds had slightly fewer ER visits – 2.7 per 1,000 people -compared to the older group.

The researchers calculated that the drop in ER use means more than 60,000 fewer visits for 19- to 26-year-olds across the three states  in 2011. They also found that the  largest relative decreases in ER use were among women and blacks.

post on Washington Post‘s Wonkblog covered the study and discussed further findings:

The researchers had another finding that seems just as important. While the total number of ER visits among the under-26 group was down, about the same number of people still went to the ER. The distinction here is that young adults with chronic conditions, who have greater care needs, probably now had better access to non-ER care settings, so their number of visits to the ER decreased. But the finding also suggests that healthy young adults, who might have shunned health insurance before, still continued to see the ER as a place for seeking out routine care, according to the study. Further, insurance likely makes those ER visits cheaper, which could actually increase how much people use the ER, the researchers wrote.

Hernandez-Boussard and her colleagues concluded in their paper, “As EDs face capacity challenges, it is important to consider how to meet the broad underlying needs of young adults through other channels and ensure the needed availability of these alternative health services.”

Previously: Abraham Verghese on health-law battle: “We’ve worried so much about the process, not the patient”
Photo by Eric Staszczak/KOMU

Clinical Trials, Patient Care, Research, Science, Stanford News

Re-analyses of clinical trial results rare, but necessary, say Stanford researchers

Re-analyses of clinical trial results rare, but necessary, say Stanford researchers

The results of large clinical trials are used to make important clinical decisions. But the raw data on which these results are based are rarely made available to other researchers, perhaps due to concerns about intellectual property or giving a leg up to competitors in the field. But a new study by Stanford’s John Ioannidis, MD, DSci, shows that the re-analysis of such data by independent research is critical: About one third of the time it leads to conclusions that differ from those of the original study.

The research was published today in the Journal of the American Medical Association.

Clearly, data sharing is an important step in making sure research is conducted efficiently and renders reproducible results

For the study, Ioannidis and his co-authors surveyed about three decades of research cataloged in the National Library of Medicine’s PubMed database looking for re-analyses of previously published clinical-trial data. They found fewer than 40 studies that met their criteria (reanalyses using the original data to investigate a new hypothesis, or meta-analyses of several studies were not included) and, as I wrote in a release:

Thirteen of the re-analyses (35 percent of the total) came to conclusions that differed from those of the original trial with regard to who could benefit from the tested medication or intervention: Three concluded that the patient population to treat should be different than the one recommended by the original study; one concluded that fewer patients should be treated; and the remaining nine indicated that more patients should be treated.

The differences between the original trial studies and the re-analyses often occurred because the researchers conducting the re-analyses used different statistical or analytical methods, ways of defining outcomes or ways of handling missing data. Some re-analyses also identified errors in the original trial publication, such as the inclusion of patients who should have been excluded from the study.

Clearly, data sharing is an important step in making sure research is conducted efficiently and renders reproducible results – goals shared by the recently launched Meta-Research Innovation Center at Stanford (or METRICS), which Ioannidis co-directs. More from our release:

The fact that researchers conducting re-analyses often came to different conclusions doesn’t indicate the original studies were necessarily biased or deliberately falsified, Ioannidis added. Instead, it emphasizes the importance of making the original data freely available to other researchers to encourage dialogue and consensus, and to discourage a culture of scientific research that rewards scientists only for novel or unexpected results.

“I am very much in favor of data sharing, and believe there should be incentives for independent researchers to conduct these kinds of re-analyses,” said Ioannidis. “They can be extremely insightful.”

Previously: John Ioannidis discusses the popularity of his paper examining the reliability of scientific research, New Stanford center aims to promote research excellence and “U.S. effect” leads to publication of biased research, says Stanford’s John Ioannidis

Events, Medical Education, Medicine X, Patient Care, Stanford News, Technology

Stanford Medicine X: From an “annual meeting to a global movement”

Stanford Medicine X: From an "annual meeting to a global movement"

MedX_musical_finaleAs Medicine X came to a close Sunday, ePatient and American Idol participant Marvin Calderon Jr. gave a special vocal performance that moved audience members to their feet and ended in an explosion of colorful streamers falling from the top of the main auditorium at the School of Medicine’s Li Ka Shing Center for Learning and Knowledge.

The three-day event, which was attended by more than 650 people and watched via live webcast by several thousand more, is Stanford’s premier conference on emerging health-care technology and patient-centered medicine. The conference hashtag #MedX was a top-trending term on Twitter in the U.S. throughout the conference, with more than 48,000  tweets sent out between Thursday and Sunday.

Medicine X has historically examined how social media, mobile-health devices, and other technologies influence the doctor-patient relationship. But this year, the program also focused on how partnerships forged between health-care providers, patients and pharmaceutical industry would define the medical team of the future, amplify patients’ voices, and shape medical education. Along with the topics of relationships and connectedness, a number of key themes emerged over the course of the conference, including engagement, empathy, and the imp0rtance of  treating the whole person.

Daniel Siegel, MD, clinical professor of psychiatry at UCLA, touched on several of these themes during his opening talk about developing a healthy mind, an integrated brain, and empathetic relationships. “Our relationships give us a sense of being seen, of feeling felt, of feeling connected. Those are the fundamental ways we create well-being in our bodily lives,” he said. “We live in connection to each other… Relationship experiences that are stressful early in life can lead to medical problems later.”

Several sessions put a special spotlight on the importance of treating the whole person and the link between mental and physical health. Patients shared their experiences with depression and anxiety, and many revealed how they had to grieve the loss of their healthy self in order to accept their new life. They also spoke about how they felt weakened by their mental-health condition and struggled to be empowered, or proactive, in their health care. Gonzalo Bacigalupe, EdD, MPH, a psychologist and professor of counseling and school psychology at the University of Massachusetts Boston, told patients, “Maybe the ‘e’ in ePatient is not enough. Maybe you need a ‘c’ that stands for connected. If you are connected, then the burden that you are feeling can be shared.”

Larry Chu and patient - smallSentiments about the need to foster empathy in medicine were discussed in parallel panels and during coffee break chats. Emily Bradley, an ePatient with a rare type of autoimmune arthritis, told attendees at a session about invisible pain, “I don’t fault my loved ones for not understanding my pain. I don’t want them to understand and I’m glad that they don’t. I think what’s missing is empathy.” Liza Bernstein, an ePatient advisor and three-time cancer survivor, told attendees at the closing ceremony, “Empathy doesn’t need that much. All empathy needs is us.”

The conference also tried to keep a focus on all different types of patient populations – including those who underserved. “There is a disconnect between solutions being build and the needs of vulnerable populations,” said Veenu Aulakh, executive director of the Center for Care Innovation during a talk on the “no smart-phone” patient. “We need to be designing [solutions] for today, not the future, and the 91 percent of patients that have a text-enabled phone.”

Larry Chu, MD, executive director of the conference (pictured above with Bernstein), warmly greeted the audience each morning – and on Saturday had a special announcement:  the launch of Medicine X Academy, a new effort aimed at continuing to build community among all stakeholders in health care and filling important gaps in medical education. The initiative will include a second conference in 2015 titled Stanford Medicine X ED (currently scheduled for Sept. 23-24, 2015). Joining Chu on stage to talk about the initiative, Bryan Vartabedian, MD, a Baylor College of Medicine physician and a longtime speaker at the conference, told attendees that medical education is “ripe for disruption.” And he noted that Medicine X – which has evolved “from an annual meeting into a global movement,” was poised to take it on.

Speaking of a global movement, there was very much a sense during the weekend that what was happening was bigger than just a conference – with at least one panel moderator telling attendees, “This conversation doesn’t end when we leave the stage.” And Bernstein summed up the three days of panels, presentations and powerful Ignite talks from ePatients saying, “I leave here re-energized, recharged, re-inspired and I hope you do too. Stay in touch on Twitter and see you next year!”

More news about Stanford Medicine X is available in the Medicine X category.

Previously: Medicine X explores the relationship between mental and physical health: “I don’t usually talk about this”, At Medicine X, four innovators talk teaching digital literacy and professionalism in medical school, What makes a good doctor – and can data help us find one?, Medicine X aims to “fill the gaps” in medical education, Stanford Medicine X 2014 kicks off today and Medicine X spotlights mental health, medical team of the future and the “no-smartphone” patient
Photos by Stanford Medicine X

Cardiovascular Medicine, Patient Care, Pediatrics, Stanford News

A nurse puts heart into her work at Adult Congenital Heart Program

A nurse puts heart into her work at Adult Congenital Heart Program

heart_sillman_560A few decades ago, if a child was diagnosed a serious heart defect it was essentially a death sentence, but thanks to recent advances in neonatal heart surgery, most patients now live well into adulthood. And at least one of them has gone on to care for other people with congenital heart defects.

Christy Sillman, RN, is the nurse coordinator for Stanford’s Adult Congenital Heart Program and is profiled in the most recent issue of Inside Stanford Medicine. Although most people who were treated for heart defects as children don’t require continued surgical interventions as adults, doctors now know that they have other challenges that require ongoing care. Sillman went through this firsthand. After being told as a teenager that she was “cured” and going a decade without care, she learned she was suffering from cardiomyopathy, a deterioration of the heart muscle. From the article:

“At that point, my frustration with the medical care of people with congenital heart defects was elevated,” Sillman recalled. “I wouldn’t have been in such bad shape had I gotten the right care earlier. This motivated me to get more involved.”

That involvement was huge. Sillman talked with many people who shared similar stories, which inspired her to become an advocate for patients like herself. When a position was available with the program at Stanford in 2013, Sillman jumped at the chance and was hired.

“I don’t want any teenager to go through what I went through,” Sillman said. “Being told you’re cured and finding out that’s not really true? That should never happen.”

Sillman’s personal experiences are not unusual for a congenital cardiac patient of her generation, but it influenced her professional choices and now, she says, she enjoys bringing “a patient’s perspective” to her work.

Previously: Patient is “living to live instead of living to survive,” thanks to heart repair surgery
Photo by Norbert von der Groeben

Medicine and Society, Medicine X, Patient Care, Technology

What makes a good doctor – and can data help us find one?

What makes a good doctor - and can data help us find one?

Ornstein panelWhile much conversation at Medicine X focused around the doctor-patient relationship, ProPublica reporter Charles Ornstein posed to conference attendees this morning a more fundamental question: How do you find a doctor? “This is trickier than you think,” he said and proceeded to discuss how data can yield helpful information for those looking for (or assessing their current) physician. He outlined some of the information – mostly involving doctor-industry relationships and physician-prescribing practices – that ProPublica has gleaned from federal databases, and he outlined questions that patients might want to ask their doctors about such things. (“So my doctor has a relationship with a company. But how is that affecting my care?” he said.)

Ornstein spent a good amount of time discussing the importance of making information – presumably not just information on negative things, such as whether a doctor appears to over-prescribe a certain medication or has ever been disciplined, but also about thoughts on physicians’ care from patients – more widely available.“We all want doctors who are good at what they’re doing clinically, and it’s time for us to stop making that a secret,” he said, before making his closing statement that “Data should be freed so we can make better health-care decisions.”

In the panel session – moderated by our own Paul Costello – that followed, several important points were made. First, Vivian Lee, MD, PhD, MBA, dean of the University of Utah School of Medicine and CEO of University of Utah Health Care, reminded the audience that the “majority of doctors are not bad apples” and can improve on things if given the chance. University of Utah makes patient-survey information publicly available, and she described the six-month period before this service was launched as a time where doctors worked to boost their level of care. Almost every doctor received at least 4 out of 5 stars by the time the rankings went online, she said.

Panelist Carly Medosch, a patient advocate who has had Crohn’s disease for 20 years, expressed support for access to physician data but pointed out that she doesn’t have time to dig through “tons and tons of research” – she not only has a regular job but a second job managing her disease. And “If I’m taken to the ER for a ruptured intestine I don’t have time to ask questions” about, for example, a doctor’s industry relationships, she pointed out. It was an important reminder that access to data alone might not greatly benefit the average chronically ill patient.

Towards the end of the session, the panelists shared their own ideas of what makes a good doctor, with Ornstein listing good clinical outcomes and empathy as two must-haves. Numerous attendees took to Twitter to express their own thoughts, including patient advocate Liza Bernstein, who offered at least 10 criteria. (My personal favorite: “What kind of PERSON are you? Yes, always, top of your field, but are you a #mensch?) Given the complexity of the issue, as outlined during the panel, I think this attendee hit the nail on the head by tweeting:

What makes a good doctor? Medicine is not a monolith. There is no simple, single answer, regardless of data availability.

More news about Stanford Medicine X is available in the Medicine X category.

Previously: Medicine X aims to “fill the gaps” in medical education, Relationships the theme of the day at Stanford’s Medicine X, Stanford Medicine X 2014 kicks off today and Medicine X spotlights mental health, medical team of the future and the “no-smartphone” patient
Photo of Ornstein (far right) and panelists by Stanford Medicine X

Medicine and Society, Medicine X, Patient Care, Technology

Relationships the theme of the day at Stanford’s Medicine X

Relationships the theme of the day at Stanford's Medicine X

Larry Chu long shot

Medicine X began today with a theatrical bang as quotes from past speakers filled the main presentation hall and flashed across on the stage against an electrifying soundtrack. In welcoming both old and new friends to the conference, Larry Chu, MD, associate professor of anesthesia at the School of Medicine and executive director of the conference, repeated a sentiment from last year’s event, saying, “You belong here with us – we all care about health care.”

Stanford’s premier conference on emerging health-care technology and patient-centered medicine, the event attracted more than 400 patients, health-care providers, technologists, researchers and entrepreneurs to engage in moon shot thinking about the future of medicine and health care. Several hundred more watched the conference webcast.

“We’ve seen information technologies transform lives in so many ways; now it’s time to harness this power to improve health,” Lloyd Minor, MD, dean of the medical school, told the audience in the morning. He encouraged attendees “to think big” and to use their time at Medicine X to identify collaborators to take their ideas from concept to reality.

Collaborations and relationships were the theme of the day, with sessions focused on how engaged patients and their doctors can become the medical team of the future, how the pharmaceutical industry and patients can work together in the drug discovery and clinical trial process, how chronic-disease patients use self-trackers as a sort of partner in their care, and how developers of digital technologies are collaborating with those who might not have an obvious voice. As one Twitter user commented, “Most common words at #medx conference so far: transparent, engaged, relationships, connected.”

Medicine X continues tomorrow and Sunday. If you’re unable to attend the conference in person, you can participate in plenary sessions virtually through a high-quality streaming webcast; registration for the Global Access Program webcast is free. We’ll also be live tweeting the keynotes and other proceedings from the conference; you can follow our tweets on the @SUMedicine feed or follow the hashtag #MedX.

More news about Stanford Medicine X is available in the Medicine X category. 

Previously: Stanford Medicine X 2014 kicks off todayCountdown to Medicine X: 3D printing takes shapeCountdown to Medicine X: Specially designed apps to enhance attendees’ conference experience and Countdown to Medicine X: How to engage with the “no smartphone” patient
Photo by Stanford Medicine X

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