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Medicine X

Events, Medicine X

Stanford Medicine X, in pictures

Stanford Medicine X, in pictures

We’ve written extensively over the last six days about Stanford Medicine X and its sister conference, Stanford Medicine X | ED; you can see all the coverage in this category. And now, one last look at what transpired here.

More photos of Stanford Medicine events, people and places can be found on Instagram

Photos courtesy of Stanford Medicine X

Chronic Disease, Events, Medicine X, Sexual Health

A discussion of intimacy and illness at Medicine X: “Embrace yourself and embrace your normal”

A discussion of intimacy and illness at Medicine X: "Embrace yourself and embrace your normal"

21735972186_ef347da42d_zMedicine X is well known for shining a light on dark feelings and difficult-to-talk about topics, as well as being a safe place to hold such conversations within the health-care community. Last year, a key theme of the conference was addressing the relationship of mental and physical health. The discussion of treating the whole person, not just their disease or symptoms, was expanded this year to include sexual health.

In a Sunday session exploring intimacy and illness, Medicine X executive board member and well-known patient advocate Sarah Kucharski bravely spoke about her own relationship experiences as she led the discussion. “Illness completely changes one’s relationship with one’s body. It’s the idea of feeling broken. Of feeling you’re a burden. Of feeling not sexy,” she said.

Diagnosed at the age of 31 with intimal fibromuscular dysplasia, Kucharski has undergone multiple surgeries, resulting in permanent scarring of her body. She shared with the audience her anxiety over romantic partners seeing the scars for the first time during intimate moments and suddenly having to answer their questions. She said, “To expose that visual reminder of my health, maybe it’s too much. Maybe it’s forcing me to be who I really am instead of enjoying a certain escapism,” she said. “It takes away my opportunity to talk about my health.”

Many patients and caregivers can relate to Kucharski’s struggle with intimacy and illness. She conducted an informal online survey in preparation for the conversation. The biggest finding? There is no normal. But this reality often isn’t conveyed in doctor-patient conversations. For patients who undergo a medical procedure or women who give childbirth, physician advice is usually to wait for a certain period of time until they are physically healed and then resume sexual activity “when they feel ready.”

Matthew Dudley, MD, a hospitalist who works in Alaska, said one of the factors driving the lack of doctor-patient communication about sexual health is that “health care in this country is reactionary.” He added, “We end up dealing with this emergent actions, and so you don’t get time to sit down and talk about these issues.”

In addition, pointed out panelist Alexandra Drane, the medical education curriculum at many institutions doesn’t dedicate enough time to sexual health issues. Beyond expanding the training of future doctors, she advocated for “normalizing the conversation” about intimacy. “This is a topic that most people really, really want to talk about. There needs to be training [for doctors] on how to have these conversations and how to make someone feel safe and normal,” said Drane, co-founder of the Eliza Corporation.

But more training for medical students may not to be the silver bullet that resolves the problem, say some panelists. Dudely said he received a full two weeks of training on sexual health issues during medical school. “I thought at my school we did a good job,” he said, “But in the day to day it gets lost. We need patients to go to their doctors and say, ‘I want to know more about this.’ As our culture becomes more open about these issues, I think it will come to the forefront.”

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Medical Apps, Medical Education, Medicine X, Patient Care, Technology

A look at using smartphone apps for patient-centered research

A look at using smartphone apps for patient-centered research

The usefulness and power of mobile apps in research was one of the last topics at Medicine X yesterday. One of the panelists in the late-afternoon “Clinical research in the palm of your hand” session was Stephen Friend, MD, PhD, who told attendees how willing most patients are to share their health data for science. “If you give someone a choice and ask them, ‘Do you want your data to be looked at by qualified researchers around the world?'” people usually say yes, reported Friend, president of the nonprofit biomedical research organization Sage Bionetworks.

Panelist Michael McConnell, MD, professor of cardiovascular medicine at Stanford, can certainly attest to this: He’s principle investigator of a study, MyHeart Counts, that has seen tens of thousands of users offer up their heart-related data for study.

Stanley Shaw, MD, assistant professor of medicine at Harvard, shared thoughts on how having an ongoing data connection with patients can feel for a physician-researcher: “I had a surprising sense of immediacy when I started looking at… data. We had people upload information such as their blood glucose levels. You can see people cranking the level down day by day over weeks or months. It really does remind you of that pact between an individual and their physician and that it’s a privilege to take care of patients. It’s very exciting.”

Also exciting is when apps are shown to have a direct impact on a patient’s care or quality of life. Friend gave the example of a program that reduced emergency room visits and hospitalizations by allowing providers to keep track of patients via an app. “If someone has been holed up in their house for four days, we can send someone to find out why,” he said. And if a patient stops taking a daily walk, that provides the medical team with clues as well.

Of course, not every patient— especially one with a chronic illness — is going to bother logging onto an app to share data every day, said Yvonne Chan, MD, PhD, assistant professor of emergency medicine at Mount Sinai Hospital. “We talk about access and engagement,” she said, but different types of users are going to engage with an app differently. For example, asthma patients with severe, poorly-controlled baseline disease are easy to engage and keep — especially if they happen to own a smart phone. Such patients are highly motivated to better control their disease and stay out of the emergency room.

“But people with minor disease that’s well controlled, maybe they have better things to do,” she said. Apps could be designed to engage different patient populations; maybe that asthma app could have a mode that included more entertainment for patients who are less sick and less motivated.

More news about the conference is available in the Medicine X category

Events, Medicine X, Technology

From patient to entrepreneur: Three Medicine X panelists offer advice

From patient to entrepreneur: Three Medicine X panelists offer advice

patient panel

“Who better than to solve our problems in health care than the people who live it and breathe it every day?” That was the rhetorical question posed by Darla Brown, a panelist in a Saturday Medicine X session on patients as entrepreneurs. Brown, a cancer patient who co-created digital health company Intake.Me, and her two co-panelists, Molly Lindquist and Michael Seres, talked about how they took their health-related ideas from concept to reality and offered advice for the other big thinkers in the audience. Among the points made during their 45-minute session:

-Do your due diligence: As noted by Seres, a prolific patient blogger who founded the health tech start up 11Health, “there are thousands of patients who are solving real problems every day” but there may not be a widespread need for such solutions. In other words, a product or service that is helpful to one patient may not be appealing to many others. “Make sure you’re not the one person who wants this end solution,” said Lindquist, a breast cancer survivor and founder of Consano, a nonprofit crowdfunding platform for medical research.

-Talk, talk and talk some more: When exploring the validity of an idea, pick up the phone or hit the keyboard. “You don’t need to do big market research – just talk with other patients,” advised Brown. Lindquist agreed, noting that when she was thinking of starting Consano she reached out to numerous people in her professional and personal life. (She joked that when her number comes up on her friends’ cell phones these days, they likely think, “Oh, what does she want now?”) She said the ensuing conversations “helped vet the idea and the potential issues and benefits that would come from creating an organization.”

-Be able to communicate your product and its need: Especially when working with potential investors or donors, “being really solid in your mission and intent and being able to communicate that” is key, said Lindquist. Seres shared with the audience that his first investor gave him only a “tiny bit of money” and wanted Seres to show him he could be successful on a larger scale. “Ultimately you have to prove the business model and be clear on who your target audience is and whether [your idea] is big enough,” he said.

-Know there will be challenges: “I’ve been patient for more than 30 years. I felt I knew everything about my condition and my health and my journey,” but navigating the business world was a whole different ballgame, Seres said. (He later noted that he still doesn’t think of himself as founder of a technology company: “I’m just a patient providing a solution for a problem no one else” was working on.) But patients have resilience, he pointed out, and “given what you’re dealing with on a daily basis nothing is impossible.” Brown also offered the practical tip of reading The Business Model Generation, which she and Emily Lu, MD, (the panel’s moderator) consulted before starting Intake.Me.

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Medical Apps, Medical Education, Medicine X, Patient Care

Engaging and empowering patients to strive for better health

Engaging and empowering patients to strive for better health
Nancy M-D on stageMedicine X yesterday featured a series of talks on a topic that is near and dear to the heart of many conference attendees: Empowering and engaging patients. Marty Tenenbaum, PhD, a former consulting professor of computer science at Stanford, began the session with a moving talk on how difficult and frustrating it was to find the right therapy after he was diagnosed with metastatic melanoma 17 years ago.

“I spent a lot of time in the stacks of Stanford reading medical journals. They all agreed on one thing, which was my dire prognosis. I thought, there’s gotta be something better than this,” he said. Tenenbaum’s ordeal prompted him to create a nonprofit, called Cancer Commons, which helps connect cancer patients to the therapies that have the best chance of curing them.

Howard Look, president and CEO of the app Tidepool, said it “was like crawling through broken glass” to get access to his daughter’s blood glucose data when she was diagnosed with type 1 diabetes in 2011. “We quickly discovered how hard it is to calculate the right dose of insulin,” Look said, driving the point home by showing a series of texts he once received from his daughter, Katie:

Katie: “Dad, I’m low. I’m 52 and dropping.”
Howard: “That’s okay, you have your juice boxes right?”
Katie: “I can’t find my juice boxes.”
Howard: “I’ll come get you.”
Katie: “I don’t know where I am.”

“This is a scary moment if you are a parent,” he said. “You might think that when the stakes are this high there must be a way to manage your diabetes with some sort of software or app. At the time, there wasn’t one.” This motivated Look to design an app that helps diabetic patients get and use to their blood glucose data effectively. “When you liberate the data, you empower the patient and enable them to engage however they want to engage,” Look said.

Next, Brian Loew, founder and CEO of Inspire, talked about the online community of patients and medical professionals in that social network. Many patients have reporting feeling more able to discuss certain issues with their doctors after first talking with their peers in Inspire, he said. “How do I travel with a wheelchair? How can tell my kids I have cancer?  These are questions that are often easier to ask of a person who has done or experienced it,” Loew explained.

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Events, Medicine X, Patient Care, Technology

At Medicine X, designers offer their take on why patient-centered design is top priority

At Medicine X, designers offer their take on why patient-centered design is top priority

Aaron Sklar at MedXAs a Medicine X veteran, I’m used to hearing patients talk about the importance of putting patients’ needs first. But yesterday afternoon, I got to hear about patient-centered design from designers.

At a session called “Fulfilling the promise of technology in health through human centered design,” Joan Saba, an architect who designs hospitals for NBBJ, used a personal story to illustrate how good design is essential to patient care. Her mother recently became sick and needed to stay at the hospital overnight, and “this is where she spent 24 hours,” she said. Sounds of ambulances wailing and doors slamming filled the lecture hall while an image of a bed surrounded by electrical cords and medical equipment lit up the screen. “Her room was right above the ambulance bay,” Saba explained.

With recent advances in technology, hospital rooms don’t need to look, sound or feel like this, said Saba. “So, what should a patient’s room look like now?” It being a calm place (unlike her mom’s room) is important, but there are other considerations, too: “Now we are thinking about it being a place for learning and information exchange.”

This desire to think about such an exchange, and improved doctor/patient communication, was echoed in the talk by Marc Katz, MD, MPH, chief medical officer of the Bon Secours Heart & Vascular Institute. He told the story of meeting patient-advocate Sarah Kucharski, who has the rare disease fibromuscular dysplasia and has endured many medical procedures, including a triple bypass surgery, back at the first Medicine X. “I go to several media conferences a year, and this was the first time I’d seen a patient present,” he recalled. “This was an eye-opening experience.”

Hearing about what Kucharski went through, prompted Katz to start querying other patients about their cardiac surgeries. “The biggest problem was communication — patients didn’t feel they understood what was happening [while at the hospital],” Katz said. So he helped develop Co-Pilot, a program that assigns a personal nurse to each patient. The program is still in its early stages but it seems to be paying off, Katz said: In a sample of about 150 patients, the Co-Pilot program reduced the duration of hospital stay and readmission, also, patients reported greater satisfaction.

After a talk from pain management expert Frank Lee, MD, on a project he started to increase transparency about the way patients’ prescription narcotic use is tracked and to hopefully, in turn, curb prescription painkiller abuse, speaker Aaron Sklar closed things off with a provocative statement. Sklar, managing director at Healthagen and co-founder of Prescribe Design, suggested it may be “time for technology to fade into the background.” What he meant is that it is the patient, not technology, that should be at the center of health-care design. “Actually we just coined a new term to describe this,” Sklar said. “D-patients: Patients that design.”

More news about the conference is available in the Medicine X category. Those unable to attend the event in person can watch via 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 @StanfordMed feed.

Photo of Sklar courtesy of Stanford Medicine X

Big data, Events, Health Costs, Health Policy, Medicine X

Peter Bach on drug pricing: “A system so broken even a child could manipulate it”

Peter Bach on drug pricing: “A system so broken even a child could manipulate it”

Peter Bach at MedX

The U.S. medical system is like a New England toll road: It’s designed to extract tolls from patients all along their health-care journeys, with a callous disregard for whether or not these travelers arrive at their desired destination, a place of better health.

This was the angry message delivered by Peter Bach, MD, director of Memorial Sloan Kettering’s Center for Health Policy and Outcomes, who was the keynote speaker at today’s Medicine X conference.

Dr. Bach is a physician, an epidemiologist, a researcher and a respected health-care policy expert whose work focuses on the cost and value of anti-cancer drugs. He was also a caregiver who has traveled down the patient side of the system as his wife died of cancer.

In his talk, Bach discussed three of the major toll takers in the system — pharmaceutical companies, hospitals and researchers — and how the public’s wielding of a growing body of health-care data could be used to reign in a process that is driven more by profit than health outcomes.

This week no discussion on escalating health-care costs could pass without mentioning Martin Shkreli, the 32-year-old hedge fund manager whose drug company raised the price of a decades-old anti-parasite drug by more than 5,400 percent. “He made it clear that the system is so broken even a child could manipulate it,” said Bach.

But Bach went on to show some promising quality improvement projects that are helping to bring accountability into the health-care system.

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Events, Medicine X, Patient Care, Precision health, Public Health

At Medicine X, talking about owning one’s data and about patient-tailored health care

At Medicine X, talking about owning one's data and about patient-tailored health care

Matthew Might on stage - 560Health care that’s tailored to you and taking ownership of your health data were the themes of the morning yesterday at Medicine XLloyd B. Minor, MD, dean of the medical school, got the conversation rolling by defining precision health, and in a session that followed, several speakers shared stories that illustrated various aspects of this area.

In a presentation cleverly called “Can medical ‘selfies’ save us?” Steven Keating, a graduate student at MIT, began by explaining to attendees why it’s important to monitor your own health. Several years ago doctors detected a slight abnormality in Keating’s brain; they told him to “monitor it” and he took this advice to heart. He requested copies of his medical records, learned about the brain and paid close attention to how he was feeling, he explained. “Then I started smelling whiffs of vinegar,” he said.

Keating urged doctors to conduct an MRI and discovered he had a brain tumor (about the size of a lemon) that would need to be surgically removed. Keating told the audience that his interest and engagement in his own health care wound up saving his life.

Next, Claudia Williams, senior advisor for health innovation and technology at the White House Office of Science and Technology Policy, took the stage to discuss the Precision Medicine Initiative that was launched this January by President Obama’s Administration. The initiative, she said, is “about moving away from the one-size fits all approach and moving toward one that tailors [care] to your specifics.” To do this, the National Institutes of Health is now inviting people to join a cohort of one million individuals (or more) that will contribute biological samples and data to advance researchers’ understanding of heath and disease.

Many people have said they would participate in this initiative if they could get their own medical records back, Williams said. “Building trust and accountability” is a key part of this initiative, she said, noting that “If you want encrypted email data, you have the right to it.”

Having access to data from this initiative, especially genomic data, could help patients learn which drugs will be most effective for them and help people with rare diseases learn more about their illness, Williams told me during a post-panel interview.

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Aging, Events, Medicine and Society, Medicine X, Stanford News

Living long and living well: A conversation on longevity at Medicine X

Living long and living well: A conversation on longevity at Medicine X


There were big-time laughs, and the expected misty eye or two, at today’s Medicine X session on aging and longevity. Natrice Rese, a retired personal support worker, began the conversation with a moving ePatient Ignite! talk about how life for many older adults is less than “golden.” She told the audience how difficult time spent in a nursing home or care facility can be: “So many people wait to be fed, wait to be dressed, wait to be undressed, wait to be taken outside… When you’re dependent on care from others, your life is reduced to a waiting game.”

Her mother found herself in one such place at the age of 85, and Rese recalled how her mom pulled her aside one day and said, “Don’t come near these places – it’s not good here.” Her mother was in the throes of Alzheimer’s and unable to offer further details, but “her words stay with me today,” Rese somberly told the audience.

Rese said her mom’s comments ultimately reinforced her desire to work to make sure older adults feel appreciated and are able to “create memories that matter.”

Fellow panelist Barbara Beskind is certainly doing that – and more. The 91-year-old former occupational therapist made headlines when she landed a job at Silicon Valley design firm IDEO. Appearing at the conference alongside Dennis Boyle, a partner and founding member of the firm, she goes to the office every Thursday and is now working on a variety of projects related to aging – including a redesigned walker.

Younger designers “can’t put themselves in the shoes of the elderly,” Beskind told USA Today earlier this year. “People who design for the elderly think they need jeweled pill boxes or pink canes. We need functional equipment.”

“I admire you,” Rese told Beskind during a panel discussion, after hearing about Beskind’s contributions. “You shouldn’t be one of a few – you should be one of many.”

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Events, Medical Education, Medicine X, Stanford News

Learning from patients by walking in their shoes

Learning from patients by walking in their shoes

digital storytelling workshopWhere else but at a medical conference in Silicon Valley would you hear the term “empathy hack”? The concept of the empathy hack unites the acknowledged need for education geared toward fostering empathy in health-care providers with the innovative, disruptive mentality of the valley. The result is “One Day,” a pilot project led by Rice University’s Kristen Ostherr, PhD, and Roni Zeiger, MD and CEO of, who shared their hacking concept with attendees at a Stanford Medicine X | ED workshop yesterday.

The concept behind “One Day” is to pair a patient and a learner (a medical student, doctor, researcher, hospital administrator, or educator) and have the learner experience a day in the life of that patient, with everything that entails, including self-treatments and physical challenges caused by the patient’s illness.

The learner receives a “kit” containing materials that simulate the condition of the patient for the learner, i.e.  a thin straw and air pack to simulate a nebulizer used by patients with cystic fibrosis, or leg weights to be worn to simulate the drag caused on limbs by Parkinson’s disease.

Once patient and learner are matched, they agree on a form of communication for the day, with modalities including SMS Text, Facebook chat or texting with video, audio and photographs. The learner then follows the actions of the patients during the day, whether administrating nebulizer treatments or trying to negotiate crossing a street quickly with limbs that are weighed down.

After describing the project, Ostherr and Zieger asked attendees to brainstorm ideas for expanding this model to be used for other patient illnesses and experiences. Participants in the outdoor workshop were doctors, patients and medical educators, and their responses included chronic pain, diabetes, homelessness patients, and palliative care and end of life treatment. Caroline Okorie, MD, a Stanford pediatric pulmonologist, said she would like to see an exercise like this for teenagers dealing with CF: “They really have a unique issues, even in comparison to adults.”

A patient who has been dealing with chronic pain for years suggested that learners should deal with multiple challenges, as many patients do. “It may not just be that the pain is your back, that can lead to shoulder pain, or headaches, and all this happens at once.”

Zieger and Ostherr, who hope to bring the project to medical schools, emphasized the simplicity of the model: The kits cost approximately $30, and HIPPA concerns are handled by informed consent filled out by the patient participants. It’s small investment for the potentially-eye opening and revelatory experience of health-care providers walking in the shoes of a patient, even just for a day.

Jacqueline Genovese is assistant director of the Arts, Humanities and Medicine Program within the Stanford Center for Biomedical Ethics.

More news about the conference is available in the Medicine X category. Those unable to attend the event in person can watch via 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 @StanfordMed feed.

Photo of Kristen Ostherr and Roni Zeiger (both standing) courtesy of Stanford Medicine X

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