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Patient Care, Public Health

Survey of e-patients offers insights on patient engagement and access to health care

Survey of e-patients offers insights on patient engagement and access to health care

6842253071_a9b35831c0_zPeople who seek out medical information and want to have a more active role in their health care are increasingly becoming the norm. To learn more about this growing community of engaged patients, Inspire, the largest online community of e-patients in the United States, surveyed 13,633 of their members, representing 100 countries on six continents.

The results of the company’s survey were recently released in the online report “Insights from Engaged Patients: An analysis of the inaugural Inspire Survey” (link to .pdf). Among the key findings:

  • About 55 percent of patients are “well-prepared for their doctor’s visits” and bring a buddy to assist with their appointment. (As one survey participant reported, “The more I inform myself with accurate information on the medications taken, or the medications available, the more I am able to have meaningful conversations with the doctors concerning treatment.”)
  • 52 percent of patients are largely responsible for initiating conversation with their physicians about potential new treatments.
  • Two-thirds of patients use social networks as a source of information and support for their health conditions.
  • Half of all patients reported having difficulty with the affordability of their medications at some point in their life.
  • 72 percent of U.S.-based patients reported experiencing some increase in their healthcare costs.

You might think that since the people surveyed were members of an online health community, they’d all be savvy, avid users of every kind of heath app and gadget. Nope. Instead, 72 percent of survey-takers reported they’d never used a smartphone app for their health-care needs. Moreover, less than half of the people surveyed reported feeling that such an app would be useful to them.

The rest of the report, which illustrates there are clear barriers that prevent people from adopting health-care technology and from getting the care and medications they need, is worth a read. (And, as a reminder, we’ve partnered with Inspire on a patient-focused series that appears here once a month.)

Previously: Engaging and empowering patients to strive for better health“What might they be interested in learning from me?” Tips on medical advocacy and A wake-up call from a young e-patient: “I need to be heard”
Photo by UW Health

Ask Stanford Med, Patient Care

Diagnostic errors: “A complex problem that requires a many-pronged, multi-level attack”

Diagnostic errors: "A complex problem that requires a many-pronged, multi-level attack"

A landmark Institute of Medicine report released last last month showed that despite dramatic improvements in patient safety over the last 15 years, diagnostic errors have been the critical blind spot of health-care providers.

Kathryn McDonald, executive director of Stanford’s Center for Health Policy/Center for Primary Care and Outcomes Research, is a member of the committee that wrote the report, “Improving Diagnosis in Health Care.” I recently spoke with her about the report’s findings and also got her suggestions for limiting one of the most overlooked health-care dilemmas today. Among our Q&As:

Q: You outline eight goals that physicians and health-care providers should follow in their diagnostic practice. Which do you believe are the most significant?

McDonald: They are all important. I know that isn’t a satisfying answer, but this is a complex problem that requires a many-pronged, multi-level attack from education to payment system reforms. We tried to be bold and aspirational, while grounded in the existing evidence. I guess if I had to underscore a goal where I am most optimistic that it will make a difference in the short run, I’d point to the teamwork one. There is a growing evidence base that the benefits of teamwork accrue to all members of the team, so this recommendation has the potential to be a win-win for all involved. Improving diagnosis is quite challenging, partly because making a diagnosis is a collaborative effort and involves many, often iterative, steps — few simple ones. These steps can unfold over time, across different health-care settings, and usually involve diagnostic uncertainty. All the moving parts, all the different types of expertise, all the people involved, well that’s a call for teamwork. This IOM report and the challenge of improving diagnosis puts health-care organizations on the hook for ensuring that health-care professionals have knowledge and skills to engage in effective teamwork — both interprofessionally and intraprofessionally. And the goal doesn’t stop there. We also recommended, as part of this first goal, that health-care professionals and organizations should partner with patients and their families as diagnostic team members, and facilitate patient and family engagement in the diagnostic process, aligned with their needs, values and preferences.

Beth Duff-Brown is communications manager for the Center for Health Policy and Center for Primary and Outcomes Research (CHP/PCOR).

Previously: Better communication between caregivers reduces medical errors, study finds

Events, Patient Care, Stanford News

At first-ever Stanford Medicine 25 Symposium, a focus on bedside medicine and a call for community

At first-ever Stanford Medicine 25 Symposium, a focus on bedside medicine and a call for community

Stanford 25 event attendeesOn his first day as an attending physician at Stanford, Abraham Verghese, MD, noticed something unusual. “I was struck by the fact that the house staff were spending a great deal of time wedded to their computers,” he recalled. “And it was not their doing. They didn’t sign on to do that.”

His experience reflects an increasingly common trend in modern medicine: With the introduction of new medical technologies­­, physicians today find themselves spending more time at the monitor and less time at the bedside.

Verghese recounted his story to a packed room of physicians and clinical educators who had traveled to Stanford from places as far flung as Brazil and Australia to attend the inaugural Stanford Medicine 25 Symposium.

The two-day event provided attendees with the tools to foster and encourage a robust bedside medicine culture at their home institutions.

The time is right, said Verghese. Today, many physicians and educators are advocating for a more hands-on approach to medicine. At the same time, an increasing number of bedside medicine programs are popping up at universities and hospitals worldwide: “I’m hoping that this is the moment when we all come together, and we stay together and connected in this effort to take what we all believe are fundamental and important skills – important to the welfare of the patient, important to practice cost-effective medicine, important in choosing wisely – and we form a community with solidarity around that theme.”

Throughout the symposium, participants learned the basics of evidence-based physical diagnosis from Steve McGee, MD, author of a textbook of the same name and a professor of medicine at the University of Washington. They learned how to schedule and program consistent teaching rounds, and how to incorporate technology without losing connection with the patient. They also heard from Andrew Elder, MD, professor of medicine at Edinburgh University and Junaid Zaman, MD, a postdoctoral researcher at Imperial College London and Stanford, about the MRCP PACES examination – a high stakes clinical exam that all medical school graduates in the UK must pass to continue their postgraduate education, an exam run and administered by Elder.

During an afternoon panel, experts from Johns Hopkins, Stanford, the Seattle VA, and the University of Alabama, Birmingham discussed ways to create a bedside medicine culture. Ideas included inviting master clinicians to teach at the bedside and hosting regular workshops. But, the panelists agreed, the support of community is critical. “It’s really hard to build a bedside medicine experience,” noted Brian Garibaldi, MD, of Johns Hopkins. “Community is key.”

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In the News, Medicine and Society, Patient Care

Stanford bioethicist weighs in on California’s new end-of-life law

Stanford bioethicist weighs in on California's new end-of-life law

Earlier this week, California Governor Jerry Brown signed the controversial “End of Life Option Act,” which will take effect in 2016 and allow medically assisted suicide in the state. The news was the topic of KQED’s Forum yesterday, and Stanford bioethicist David Magnus, PhD, was one of the featured guests.

Magnus noted that the law is likely to affect a very small percentage of the population, and he thinks the debate surrounding it “reflects a much, much deeper problem in how we deal with communication and care at end of life. This isn’t really going to solve that problem…” Another show guest, Toni Broaddus, California campaign director of Compassion & Choices, agreed that more conversation between doctors and patients is needed, but said this can help: “We hope that what part of this law does, in addition to providing relief from those who need it at the end of life [is] create the room and the opportunity for doctors to talk with their dying patients about all of the options…”

The entire conversation is worth a listen.

Previously: How would you like to die? Tell your doctor in a letterStudy: Doctors would choose less aggressive end-of-life care for themselvesStanford experts weigh in on spate of “right to try” laws for the terminally illOn a mission to transform end-of-life care and The importance of patient/doctor end-of-life discussions

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

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

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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Events, Medical Education, Medicine X, Patient Care, Precision health, Technology

“No ordinary conference”: The magic that is Medicine X returns to the stage

"No ordinary conference": The magic that is Medicine X returns to the stage

Larry Chu welcoming attendeesMedicine X, Stanford’s popular conference on emerging technologies and medicine, returned to the stage today.

The conference, which was proceeded by the first-ever Medicine X | Ed, is now in its fourth year, and the momentum and magnitude of the event has steadily increased since it began.

Last year, more than 4,000 participants in 69 countries took part in the Medicine X experience via Twitter, making it the most-discussed academic conference in the world. Its past successes were reflected in the theme for Medicine X 2015: “Great Xpectations.”

After executive director Larry Chu, MD, welcomed attendees with a reminder that they “all belong here,” Lloyd B. Minor, MD, dean of the medical school, officially opened the conference with remarks that encouraged this engaged audience to take action and seize opportunities to improve health care. “This is no ordinary time in our history, and Medicine X is no ordinary conference,” he said. “We are here today to have discussions and generate ideas about how to leverage the power of information and the latest technology to improve health for people in our own communities and across the globe. Health care is truly the opportunity of our lifetime.”

Minor talking“Since last year’s Medicine X conference, Stanford Medicine has launched a bold new initiative — our vision to lead the biomedical revolution in precision health,” he said. “Precision health as the next generation of precision medicine: Precision medicine is about sick care, precision health is about health care.” Everyone participating in this event is an important part of moving this conversation forward, he explained.

Eric Topol, MD, chief academic officer at Scripps Research Institute and bestselling author, went on to give an opening keynote on ways we can use new technologies to democratize medicine and involve the patient in his or her own care. “We have views of the human being that we never had before,” Topol said, referencing smartphones and other technologies that people use to monitor their health metrics.

These new technologies are important because they’re interactive and easy for patients to use, and they allow patients to become more involved in their health care, Topol explained. He showed an image of the iconic black doctor’s bag. “These are vintage tools,” he said. “This is my bag,” he explained, pointing to an image of a several digital tools.

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Events, Medical Education, Medical Schools, Medicine X, Patient Care

Day One of Medicine X | Ed: Understanding and equipping today’s medical learner

Day One of Medicine X | Ed: Understanding and equipping today's medical learner

patient Dave on stageThe first day of Medicine X | Ed began with a suite of talks and technology demonstrations that focused on understanding and equipping today’s medical learner. The first grouping of talks, themed “meet the millennial learner,” explored how medical students learn and how technology and social media present new opportunities and challenges for these students.

Joseph Santini, PhD, kicked off the first set of presentations by discussing information barriers that disabled students, and patients, face. Santini gave his presentation in sign language, with subtitles and an interpreter so everyone could understand what he wanted to say. Unfortunately, he explained, these modes of communication aren’t always available for disabled students.

Many deaf medical students — and physicians — must pay for their own interpreters, he explained. This financial burden dissuades many deaf people from pursuing or remaining in the field of medicine. The recent shift from text-based communication to more audio and visual systems is also a challenge, Santini said. “Have you ever tried to watch videos on YouTube with automatic captioning?” he asked. We call it a crap shoot… The text is a jumble. Advances in these areas would be key.”

Speaker Dreuv Khullar, MD, a resident physician at Massachusetts General Hospital and Harvard Medical School, highlighted another challenge that medical learners face: A lack of time.

Khullar recounted a story from medical school. He was sitting with a critically ill patient when his pager buzzed. He wanted to stay with the patient, but he had eight more patients to see, and he was already late. He vowed to spend extra time with with patient the next day, but the patient died that night.

“It turns out that the most draining aspect of medical school is not the hours, it’s that you cannot be there for patients the way you thought you would be,” Khullar said. “I think of the countless opportunities for compassion that I squander for things that are less important… I think that next time [this happens] I will sit.”

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