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Cancer, Patient Care, Research, Stanford News

From petri dish to patient: Studying, treating – and trying to cure – less common cancers

From petri dish to patient: Studying, treating - and trying to cure - less common cancers

surviving melonomaIn 2015, more than 1.5 million Americans were diagnosed with cancer. Around forty percent of those new diagnoses were in three types of cancer — breast, lung, and prostate —  so it’s no surprise that those are the ones you hear about most often. But hundreds of thousands of new cancer patients each year are diagnosed with less common cancers, some affecting only a handful of patients a year. These are the diseases you don’t often hear about.

Before a few months ago, I have to admit that I didn’t know anything about cutaneous T cell lymphoma (CTCL). Each year, just a few thousand adults in the U.S. are diagnosed with the cancer, which often starts as an itchy, scaly rash — not the first thing that comes to mind when you think of classic cancer symptoms. Most people first learn about CTCL when they, or someone close to them, is diagnosed. I, on the other hand, started investigating it because I was writing about Stanford’s Cutaneous Lymphoma Group, which is spearheading research and new treatments of the disease.

At the same time, I was researching metastatic melanoma, the most advanced form of the skin cancer. While melanoma of any variety is relatively common (almost 75,000 new cases a year in the U.S.), only four percent of new diagnoses are the most severe, metastatic type. To understand both CTCL and metastatic melanoma, I spoke to patients being treated at Stanford clinics, doctors who specialize in the diseases, and researchers who study the cancers at the most basic molecular and genetic levels.

Science writers and scientists alike often justify research on rare diseases by explaining how we can learn about more common conditions through studying less common ones. But hearing about melanoma and CTCL — and how findings in the lab quickly trickle up to change clinical practice and save patients’ lives — it became ever clearer to me that research on these rarer cancers has an immeasurable impact all on its own. The clinicians I talked to were all avid proponents of integrating the latest research into their practices as soon as they could, and constantly tweaking their protocols to find the best ways to help patients. And each patient was able to get a new lease on life thanks to clinical trials and scientist-doctors willing to try new things.

To learn more about CTCL and metastatic melanoma, check out my features in the latest issue of Stanford Medicine magazine: “The rarest of rashes,” and “Surviving melanoma.”

Sarah C.P. Williams is an award-winning science writer covering biology, chemistry, translational research, medicine, ecology, technology and anything else that catches her eye.

Previously: This summer’s Stanford Medicine magazine shows some skinGene-sequencing rare tumors – and what it means for cancer research and treatmentA rare cancer survivor’s journey to thriving and advocatingHumble anti-fungal pill appears to have a noble side-effect: treating skin cancer and Raising awareness about rare diseases
Illustration by Matthew Bandsuch

Emergency Medicine, Ethics, Global Health, Medicine and Society, Patient Care

After Haiyan: Stanford med student makes film about post-typhoon Philippines

After Haiyan: Stanford med student makes film about post-typhoon Philippines

Multi-talented Stanford Medicine student Michael Nedelman has been featured on Scope before for his filmmaking and storytelling abilities. His new film, “After Haiyan: Health narratives in the aftermath of the typhoon,” is a series of vignettes about the November 2013 disaster in the Philippines. The film, which will be released soon, connects socioeconomic and structural issues of access to health in times of crisis.

It was filmed primarily in Tacloban, Leyte, in July and August of 2014, and Nedelman made a follow-up visit in November and December to premiere and promote the project. Despite his busy end-of-school-year schedule, Nedelman answered some questions for me about his work in a recent email exchange.

What was it like filming in the wake of a tragedy? 

Phil Delrosario said it best. He’s the cinematographer and editor I met here at Stanford. Knowing when to turn on the camera was a “huge balancing act” between our drive to document the truth, and our obligation to be compassionate storytellers. We couldn’t ignore the emotional weight of Typhoon Haiyan, and we couldn’t ignore the fact that we weren’t part of the communities we were documenting. So we sought out people who not only wanted to share their stories with us, but who could also provide some insight as to how they wanted those stories to be seen… For one of the videos, Deaf advocates like Noemi Pamintuan-Jara reached out to us first, not the other way around… That was really special for us, to be able to work alongside a community that has been promoting Deaf accessibility and culture long before we ever arrived on the scene. And we had these new partners who could give meaningful feedback on our filmmaking decisions.

Filming in the wake of a tragedy doesn’t mean everything is tragic. The shadow of Haiyan is still there, but there’s also a sense of living in the moment and moving forward. All over the city, you’ll see posters and graffiti that say, “Tindog Tacloban!” (“Rise Tacloban!”) That’s something that really resonated with our team and the ethos of our project. You can’t tell the full story of Tacloban without optimism and resilience.

How does this film link storytelling and health, and what is special about that for you?

When I was first discussing the project with one of the producers, Roxanne Paredes, we asked ourselves a similar question: How would our project add to or nuance the coverage of the typhoon? Right after the storm, Haiyan was all over the news. Tacloban was in survival mode. But months later, after many of those cameras had left, there was a different set of long-term challenges and a focus on recovery. Those were the issues we wanted to explore, which tend to be less covered by the media but still have profound implications for community health and future disaster preparedness. In short, just because the cameras stopped rolling doesn’t mean there weren’t more stories to tell. That really broadened the way in which I think of health stories.

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Cancer, Medical Education, Medicine and Society, Patient Care

Cancer Ninja fights patient misinformation, one cartoon at a time

Screen Shot 2015-06-15 at 1.16.14 PMThere seems to be a trend towards using cartoons for health education: In just the past few months, we’ve posted on children’s books, depression blogs, global-health videos, and art-based clinical skills, all using non-realist art to convey information and qualitative experience. A new blog by Andrew Howard, MD, radiation oncologist at the University of Chicago and the University of Illinois at Chicago, fits right in with this innovative bunch. His blog, Cancer Ninja, aims to use cartoons to convey both how cancer works and what it’s like to be diagnosed and treated for it. Howard started it just one month ago, so his project was fresh from the creative oven when I spoke with him on the phone last week.

What motivated you to start Cancer Ninja?

I’d been frustrated for a while with how little my patients know about cancer. They come in with all these confusions; they don’t understand the difference between chemotherapy and radiation (and from a doctor’s perspective, there’s a huge difference). They don’t understand our rationale for choosing one treatment or another or a combination. One patient was convinced that hot sauce caused cancer and was really upset that she had gotten cancer because she had gone out of her way to avoid hot sauce all of her life. I realized there is a lot of misinformation out there, and that was the purpose for starting this blog.

My wife and I have two little girls, and in the evenings sometimes they say, ‘Draw dinosaurs with me, Daddy!’ So I started drawing with them, and I enjoyed it so much that I would sometimes stay up at night after they had gone to bed, still working on my dinosaur. My wife saw me enjoying that a lot, and thought maybe I could combine this with educating people about cancer.

Your website is targeted to be generally informative about cancer; why did you start with breast cancer? 

Breast cancer is really common in this country, unfortunately, and it’s also very well studied, so we understand a lot about it, which makes it a nice model. There’s a pretty clear algorithm for the proper way to treat a patient with such and such stage breast cancer, so it makes it easy to follow along.

How many characters or episodes are you hoping to do? So far, there’s just “Jane.” 

Screen Shot 2015-06-16 at 1.36.59 PMI’m kind of experimenting. I envision that I’m going to follow Jane though her diagnosis and treatment, but my wife told me that Jane can’t die; she really likes Jane. But 40 percent of people with cancer will ultimately die of their disease, so I want to draw and write about what it’s like to be confronting one’s death, at least as I have witnessed it. What can medicine offer those people, and what can’t it? So I want to introduce a character who dies. I feel like there’s so much that’s already happened in Jane’s story, and I could go back and fill in the details. The mutation steps that turn a cell into a cancer cell, that’s actually a really complicated transformation that I could explore in greater depth.

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Medical Education, Patient Care, Stanford News, Surgery, Videos

Why become a doctor? A personal story from a Stanford plastic surgeon

Why become a doctor? A personal story from a Stanford plastic surgeon

Recent graduates: Never fear if you haven’t picked a career yet; it’s never too late to figure out what you want to do when you grow up. I’m on my third career, and Rahim Nazerali, MD, now an assistant professor of surgery at Stanford, is on his second.

He explains in this recent Stanford Health Care video:

I had a career in international health and I felt like I wasn’t interacting with enough people, I was doing a lot of behind the desk work and I never really interacted with the people I was affecting. I entered medicine for that reason.

And when he entered medical school at Brown University, Nazerali thought he would pursue emergency medicine or orthopedics. But he was wrong again. In the video, he describes a surgery — which he watched on his first day on a plastic surgery rotation — that convinced him that this field was the one for him. Plastic surgeons converted a gaping post-tumor chest hole into a natural looking chest: “You could hardly even tell that anyone was there,” Nazerali said. “At that point, I thought, ‘I want to do that.'”

Now, he’s on the front lines of patient care, where he hopes to stay.

“Many patients come back in after they have their confidence back, after they have their life back, after they have their time with their family back,” Nazerali said. “That’s what makes it really rewarding.”

Previously: Why become a doctor? A personal story from a Stanford oncologist, Students draw inspiration from Jimmy Kimmel Live! to up the cool factor of research careers and Stanford’s senior associate dean of medical education talks admission, career paths

Big data, Cardiovascular Medicine, Patient Care, Public Health, Research, Stanford News

Widely prescribed heartburn drugs may heighten heart-attack risk

Widely prescribed heartburn drugs may heighten heart-attack risk

PrilosecHeartburn – that burning sensation in the chest that occurs when stomach acid rises up into your esophagus – has absolutely nothing whatsoever to do with the heart. People with heartburn (that’s a lot of us) are at no increased risk of developing heart disease. At least, not unless they’re taking the most commonly used class of drugs for treating heartburn.

That drug class would be proton-pump inhibitors, or PPIs, and it includes omeprazole (Prilosec), lansoprazole (Prevacid), esomeprazole (Nexium) and a few more. All three are available over the counter. Although the labels direct users not to take these drugs for longer than a couple of weeks without consulting their physicians, people often pop them on a daily basis for months or years on end.

But a new PLOS ONE study, led by Stanford biomedical-informatics expert Nigam Shah, PhD, MBBS, and cardiovascular surgeon Nick Leeper, MD, shows a clear association between prior use of PPIs for heartburn and elevated risk of serious cardiovascular events including heart attacks. In a news release covering that “big data” study, which combed through nearly 3 million electronic health records to ferret out the PPI/cardiovascular-risk connection, I wrote:

… PPIs are among the world’s most widely prescribed drugs, with $14 billion in annual sales… In any given year, more than 20 million Americans – about one in every 14 – use PPIs… More than 100 million prescriptions are filled every year in the United States for PPIs, a class of drugs long considered benign except for people concurrently taking the blood thinner clopidogrel (Plavix). However, the new study upends this view: It indicates that PPI use was associated with a roughly 20 percent increase in the rate of subsequent heart-attack risk among all adult PPI users, even when excluding those also taking clopidogrel.

That increased risk was seen among younger adults (under age 45), too.

The study, in other words, found that everybody’s cardiovascular risk goes up if they use PPIs. Now, a 20 percent increase in risk may not amount to much if your baseline risk is very low to begin with (say, that of a 20-year-old woman in top physical condition with no genetic predisposition to high blood pressure or elevated cholesterol). But for many of us, especially if we’re middle-aged, a little pudgy, or struggling with hypertension or hypercholesterolemia, that 20 percent looms larger.

Importantly, people who take the second-most-widely prescribed class of drugs prescribed for heartburn, so-called H2 blockers, appear to suffer no ill effects from them in the cardiovascular-risk department, according to the study’s findings. H2 blockers, which have been around longer than PPIs, are reasonably effective.

So, why do PPIs, but not H2 blockers, cause trouble? As I noted in my release:

The study’s findings lend support to an explanation for an untoward effect of PPIs on heart-disease risk proposed by Stanford scientists a few years ago. Research done then showed that PPIs impede the production of an important substance, nitric oxide, in the endothelial cells that line all of the nearly 100,000 miles of blood vessels in an averag adult’s body.

Nitric oxide relaxes blood vessels. So it figures that chronic use of a drug that shuts down that chemical’s generation could cause chronic blood-vessel constriction and follow-on cardiovascular problems.

Read those labels, people.

Previously: How efforts to mine electronic health records are beginnning to influence critical care, New research scrutinizes off-label drug use and Damage to dead-cell disposal system may increase heart disease
Photo by John

 

Cancer, Global Health, Medicine and Society, Patient Care, Stanford News

Educating cancer patients in Africa and beyond

Educating cancer patients in Africa and beyond

ph_grid7_20554_74781Imagine beginning chemotherapy without being aware of the side effects. You’re feeling sicker than you felt before the medication, experiencing nausea, muscle weakness and losing your hair. You wonder if this is normal, but you can’t interpret the drug safety information because you don’t know how to read. You’re tempted to stop taking the medication.

Realizing that many of their patients had grappled with this dilemma, cancer care providers at Queen Elizabeth Central Hospital in Blantyre, Malawi approached Global Oncology, a non-profit co-founded by Ami S. Bhatt, MD, PhD, for help.

With one oncologist and an overstretched clinical team, clinicians at Queen Elizabeth recognized they often don’t have time to explain the chemotherapy treatment process to each patient. And, many of these patients struggle to read and comprehend complex instructions and medical terminology.

So they decided to create clinically relevant and culturally appropriate education materials designed for a low literacy patient population.

Veronica Manzo, a first-year medical student at Stanford and a member of Bhatt’s lab, is part of a team of Global Oncology volunteers developing the educational materials. She began volunteering with GO while she was working at the Dana-Farber Cancer Institute and is working to establish a chapter of the GO Young Professional Alliance at Stanford. The group held its inaugural meeting on campus last month.

cancer pamphlet“The existing materials were often too high-level for low literacy patients – wordy, complex and not designed for that culture or audience,” Manzo told me. “We looked at the most common chemotherapies in Malawi and created materials designed to target the specific side effects associated with the treatment.”

Together with Cambridge-based design firm, THE MEME Design, Manzo and a team consulted with medical and health-literacy experts to simplify complex medical information – incorporating simple language and culturally relevant illustrations – and package it in a way that could be easily printed and distributed by partners in low resource settings. The final 8-page booklet, “Cancer and You,” was introduced at Queen Elizabeth last summer and has become a helpful tool that educates patients and caregivers and improves treatment adherence.

Since the project began in 2013, the team has also collaborated with Partners in Health to modify and implement the materials in Rwanda and Haiti, and they hope to expand the work to Guatemala, India and additional sites in Africa and South America. To help support this expansion, Global Oncology has launched a 30-day fundraising campaign through Global Giving with the aim to raise $5,000 from 40 donors by the end of June.

“It’s exciting to see the positive impact the patient education materials have had in Malawi and Rwanda, and we’re looking forward to expanding this initiative to help close the gaps in patient cancer education worldwide,” said Bhatt, director of global oncology at the Center for Innovation in Global Health.

Rachel Leslie is the communications officer at Stanford’s Center for Innovation in Global Health.

Previously: Oncology hashtag project aims to improve accuracy of online communication about cancer, Stanford fellow addresses burden of cervical cancer in Mongolia and Providing medical, education and technological tools in Zimbabwe
Images by Global Oncology and THE MEME Design

Health Policy, In the News, Patient Care, Stanford News, Technology

Exploring electronic health reminders’ effect on quality of care

Exploring electronic health reminders' effect on quality of care

It’s not every day that the director of the National Institutes of Health blogs about your research. But that’s the day that David Chan, MD, PhD, assistant professor of medicine, recently had when NIH Director Francis Collins, MD, PhD, highlighted his work.

Chan, a core faculty member at the Center for Health Policy/Center for Primary Care and Outcomes Research, is exploring the impact of electronic health record reminders on the quality of primary care. He received an NIH Early Independence Award last year for his work in this area.

Collins writes:

Is 5 too few and 40 too many? That’s one of many questions that… Chan is asking about the clinical reminders embedded into those electronic health record (EHR) systems increasingly used at your doctor’s office or local hospital. Electronic reminders, which are similar to the popups that appear when installing software on your computer, flag items for healthcare professionals to consider when they are seeing patients. Depending on the type of reminder used in the EHR—and there are many types—these timely messages may range from a simple prompt to write a prescription to complex recommendations for follow-up testing and specialist referrals.

More details on Chan’s work can be found in the full post.

Beth Duff-Brown is communications manager for the Center for Health Policy and Center for Primary and Outcomes Research.

Previously: A new tool for tracking harm in hospitalized childrenAutomated safety checklists prevent hospital-acquired infections, Stanford team finds and Can sharing patient records among hospitals eliminate duplicate tests and cut costs?

Ethics, Health and Fitness, Medicine and Society, Orthopedics, Patient Care, Sports

Thinking through return-to-play decisions in sports medicine

Thinking through return-to-play decisions in sports medicine

2913800550_7fc291c915_zIn an opinion piece appearing in the AMA Journal of Ethics today, two Stanford physicians – Michael Fredericson, MD, and Adam Tenforde, MD – explore the ethics of how doctors should advise patients recovering from an injury.

Consider this scenario, the case which opens the piece:

Jordan is a 17-year-old senior in high school who has been his football team’s star quarterback, led his team to two state championships, and has a real possibility of receiving a full scholarship to a top college sports program next year. In his last session of summer training camp, Jordan took a fierce hit… [an MRI] showed that Jordan had a torn labrum in his right shoulder that would require surgery and months-long recovery, meaning that he would miss the rest of his final season.

[His physiatrist] had known instances in which this particular type of injury ended a quarterback’s athletic career. She had also read about a few cases in which athletes recovered fully from the injury. Since so much of recovery depends on the injured person’s following the rehabilitation and physical therapy plans, [she] wanted Jordan to approach his injury with the optimism that adherence to the plan would enable him to return to athletics. At the same time, she did not want to hold out false hope that might keep Jordan focused exclusively on football when, in the long term, that might not be the best use of his senior year.

The most important part of what we’re trying to convey when treating athletes is that as team physicians our goal is the health and well being of the athlete

When college scholarships and admissions decisions are on the line, a doctor’s recommendations affect more than her patient’s physical health. How to weigh the different interests at stake? Fredericson and Tenforde make clear that medical decisions must prioritize the long-term health of the athlete. When I interviewed him, Fredericson, a professor of orthopedic surgery, director of PM&R Sports Medicine, and team physician for Stanford Athletics, told me:

The most important part of what we’re trying to convey when treating athletes is that as team physicians our goal is the health and well being of the athlete. Ultimately, we are the ones who are trying to protect their health. Sports physicians have gotten a bad rap; people think we’re trying to help coaches, or help athletes at the expense of their overall or long term well being. We might push the process to help try to get them better more quickly, but ultimately we have their long-term best interests in mind.

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Cardiovascular Medicine, Events, Patient Care, Stanford News

Honoring doctors, nurses of the early days of Stanford’s coronary care unit

Honoring doctors, nurses of the early days of Stanford’s coronary care unit

image.img.320.highWhen I was in the hospital recently to give birth to my daughter, I saw my doctors briefly during their rounds, but it was the nurses and nurse midwives who primarily cared for me. So when I read in a recent Inside Stanford Medicine feature story that 50 years ago, nurses weren’t even allowed to perform tasks like start IVs, I was shocked.

In the 1960s, Stanford was home to one of the earliest coronary care units, led by Alfred Spivack, MD. Spivack taught the nurses working on the unit to take on tasks that were, at the time, mainly done by physicians. Joan Fair, PhD, RN, who was one of the unit’s original nurses and is now a cardiovascular researcher, recalls:

“Some doctors were totally against nurses doing these kinds of things… It also took time for some doctors to accept our opinions about how their patients were doing, or if we saw a problem and called them and asked them to take a different line of treatment.”

Joan Mersch, MSN, the unit’s former nurse coordinator, described in the piece how beneficial this extra training was to patients. “When you know how to read electrocardiograms, recognize lethal cardiac rhythms, perform resuscitation and defibrillation — it saves patient lives,” she said. “You understand what needs to be done, and you can take action.”

A big proponent of using technology to improve care, Spivack depended on the nurses to learn how to use the devices and incorporate them in the daily care of patients. And he also encouraged the nurses to pursue their research interests; many, like Fair, went on to obtain graduate degrees.

Last month, almost two dozen former nurses from the unit came together for a dinner celebrating a major gift from Spivack, which will pay for the nurses’ station in the new heart acute care unit when the new adult hospital opens in 2018.

Photo by Steve Fisch

Big data, BigDataMed15, Events, Patient Care, Research, Stanford News, Technology

Experts at Big Data in Biomedicine: Bigger, better datasets and technology will benefit patients

Experts at Big Data in Biomedicine: Bigger, better datasets and technology will benefit patients

population health panelThe explosion of big data is transforming the way those in health care are diagnosing, treating and preventing disease, panelists at the Big Data in Biomedicine said on its opening day.

During a five-member panel on population health, experts outlined work that is currently being done but said even bigger datasets and better technology are needed to ramp up the benefits from digital data and to save lives.

“Using the end-of-millions to inform care for the end-of-one – that is exactly where we’re going,” said Tracy Lieu, MD, MPH, director of research at Kaiser Permanente Northern California, a health-care network that includes 21 hospitals, 8,000 physicians and 3.6 million patients. “And we think that in a population like ours, in an integrated system like ours, we are in an ideal setting to do personalized medicine.”

Stanford Medicine professor Douglas Owens, MD, director of the Center for Health Policy and Center for Primary and Outcomes Research, led the panel on Wednesday. He said that big data is also changing how research is being conducted.

“There’s been an explosion of data of all kinds: clinical data, genomics data, data about what we do and how we live,” said Owens. “And the question is how can we best use that data to improve the health of the individual and to improve the health of populations.”

Lieu said two key trends are central to medical researchers: informatics and genomics. She told attendees that Kaiser utilizes a “virtual data warehouse” with the digital data of 14 million patients dating back to 1960. But Lieu cautioned that the data are not always the means to an end, particularly if the findings are not tested and implemented.

“Sometimes we fail. And we fail when we identify a problem of interest, we make a decision to study it, we assemble the data, we analyze and interpret the results – and then we send them off to journals. So we fail to close the loop,” she said, because researchers typically don’t go beyond the publication of data.

Lieu said Kaiser is now focused on trying to close that loop. “To do that, we need the kinds of tools that you in this group and the speakers at this conference are developing,” she explained. “We need better and better technology for rapidly analyzing and aggregating data.”

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