TAG: "Health information technology"

Twitter could provide key details about transgender people’s health needs


UCLA study suggests that social media could help fill knowledge gap.

Sean Young, UCLA

By Enrique Rivero, UCLA

Transgender and gender-nonconforming people have a higher-than-average risk for AIDS and are more vulnerable than others to depression. But because stigma about gender identities makes them less likely to disclose information about themselves to researchers, it also has been difficult for doctors to understand the best ways to provide care for them.

New research by the University of California Institute for Prediction Technology suggests that social media could help fill that knowledge gap.

In a study published in the peer-reviewed journal JMIR Mental Health, the researchers reported that because transgender and gender-nonconforming people frequently use social media to discuss important health and social needs, resources like Twitter may provide a wealth of useful information for doctors and public health professionals.

“Transgender individuals are at risk for some of the most important public health problems, such as HIV, substance abuse and depression,” said Sean Young, the study’s co-author and the executive director of the institute, which is based in the UCLA Department of Family Medicine. “There has been little research studying transgender communities because they can be very closed communities who fear stigmatization. Our institute has studied how to use social big data to address public health needs and we wanted to apply this work to address the needs of transgender communities and researchers.”

Young and co-author Evan Krueger collected 1,135 tweets with 13 relevant hashtags, including terms like #trans or #girlslikeus. The tweets discussed issues such as violence, discrimination, suicide and sexual risk.

“This approach can be used to better understand people, prevent diseases and predict important trends — including views on policies that affect transgender populations or changes in health,” said Krueger, a doctoral student at the UCLA Fielding School of Public Health.

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Higher tech, higher touch


At new UCSF Medical Center at Mission Bay, tech touches are helping improve patient care.

Eleven-year-old Brett Demy looks over the members of his care team at UCSF Benioff Children's Hospital San Francisco using a bedside digital tablet available in all patient rooms. (Photo by Elisabeth Fall)

By Kathleen Masterson, UC San Francisco

Personalized digital media walls. Push-button, custom dinner orders. Robot deliveries.

This isn’t a futuristically imagined hospital from “The Jetsons.” It’s all part of UCSF Medical Center at Mission Bay, where technological touches aren’t just making patients more comfortable – they’re freeing up care teams to focus more on health and safety.

“When we first started planning the medical center 10 years ago, we focused on creating the most healing environment we could,” said Pamela Hudson, executive director of clinical systems at UCSF Medical Center at Mission Bay. In addition to designing rooms and technology for patients, “we really wanted to give our staff the mind space they needed to focus more on the patient.”

Outside hospital walls, texting phones and digital tablets are now the norm, but health care has been slower to adapt because of issues surrounding patient privacy and reliability of the communication device – especially when dealing with life and death.

UCSF has rolled out cutting-edge technology at Mission Bay that’s finally brought modern convenience to patient care.

Empowering patients with a screen tap

Digital tablets can be handy during a hospital stay for entertainment between clinical check-ins, but a new bedside tablet system at UCSF is empowering patients to play an active role in their own care.

For 11-year-old Kellen Durham, he used the tablet’s private email app to send questions to his doctor, and order meals from another app pre-programmed to show only foods that met his specific dietary needs.

“Typically the staff would come in to talk about his specific question he would post using the tablet,” said Kellen’s mother, Ginger. “All his concerns were being addressed, and I think that made him feel like he was important in making his own decisions.”

UCSF is among the first in the United States to implement this clinical communication system, developed by Oneview Healthcare.

“A big part of the new technology is to allow patients to have more of an interactive conversation with their care teams, and to be a part of their own care,” said Anson Daine, M.S.N., and a key member of the Mission Bay transition training team.

Kellen spent several weeks at UCSF Benioff Children’s Hospital San Francisco for treatment for chronic pancreatitis, which often left him fatigued. He turned to the technology to stay engaged, setting reminders in the goal-setting section of the app to brush his teeth or take a shower to give himself little prods on days he wasn’t feeling well.

“His ability to set goals for himself was also very empowering,” said Durham’s mother. “He had a physical thing to look at, to check off, and that helped to motivate him to get out of bed and do other things.”

When he wasn’t working on those goals, she noted, he certainly enjoyed playing video games on the system too.

Connecting caregivers when seconds matter

Other technology is more invisible to patients but has a real impact on how smoothly – and safely – the hospital runs.

The nurse call button by the patient’s bedside doesn’t just buzz a generic alarm in the hallway. It’s tied into a new wireless clinical communication system that texts the nurse on duty. If the nurse doesn’t respond within two minutes, the call is automatically forwarded to the next nurse, and if s/he doesn’t respond, it’s forwarded to the charge nurse of the unit.

The system recognizes the difference between non-emergency and other calls and texts the most appropriate person in the chain. “The system is triaging needs based on which button is pushed and sending the alarms to the appropriate person,” said Daine.

Making pagers a thing of the past

The new alert system is tied into a bigger innovation: allowing patient care staff to finally evolve beyond 90’s-era pagers and securely communicate through calls and text.

Nearly all hospital staff carry a cellphone running software specifically designed by Voalte, a health care communication company. Unlike spotty cell coverage, the system runs on a robust wifi network that reaches almost every corner of the hospital and allows calls and texts to continue on elevators.

“This has been a runaway success story since the hospital opened,” said Daine.

Nurses now can text each other for help with a patient, to check on a transport team coming to move a patient, or to request a room cleaning. Even if staff members don’t know a specific name, they can request assistance by job description too – the system automatically directs the call or text to whoever is signed in under “Spanish translator” or “obstetrician.”

In an emergency, the system sends texts in addition to traditional alarms, and those texts can come in a full minute or more before the alarm sounds. For some, those seconds could make a big difference.

Raising the bar with robots

The new hospital complex is almost three football fields long, a serious distance for staff to push dirty linens, which can weigh more than a ton.

Enter the robot. A fleet of 25 robots, to be precise, and one of the largest hospital robot fleets in the world.

The robots can be spotted quietly whirring down the hallway at a human walking pace, waiting patiently for an elevator or pausing outside the operating room with surgical instruments after texting a nurse that his or her delivery is ready. Different bots transport medicines, meals, recycling and waste, surgical instruments and lab specimens.

Not only are the robots efficient, they also play a key role in hospital safety, Hudson said. “When you look at injuries to employees, especially at medical centers, they occur when they’re lifting large equipment or moving heavy linens,” she said.

Plus robots can lift, transport and deliver important specimens or medicines far more reliably and efficiently than humans. Medications, for instance, can only accessed when a clinician enters a special code as well as his or her fingerprint.

This frees up the time of busy caregivers, said Josh Adler, M.D., UCSF Medical Center’s chief medical officer.

“This allows them to spend more time right at patient’s bedside, and not searching for a particular medicine, or worrying if a medicine will be delivered at the time the patient needs it.”

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Graduate student examines use of social media in health care


Post conveying negative emotions generate an increase in user comments, study finds.

Holly Rus, UC Merced

By James Leonard, UC Merced

The use of images and direct questions by health communicators on Facebook tends to increase user engagement, though linking to external websites and videos does not. Posts conveying positive emotions have no clear impact on engagement, while negative ones — including expressions of depression, sadness, doubt, fear, hopelessness, anxiety and anger — generate an increase in user comments.

Those were a few of the results of a study on social media and health communications by UC Merced Ph.D. student Holly Rus, who will present her findings this week during the 36th Annual Meeting & Scientific Sessions of the Society of Behavioral Medicine in San Antonio.

Working with professor Linda Cameron, Rus conducted an analysis of more than 500 posts by diabetes-related support pages on Facebook. The researchers looked for attributes in posts that could be used to predict not just overall user engagement, but specific types of engagement.

Among the study’s findings:

  • Posts with images had more than four times as many likes and 11 times as many shares as those without.
  • Messages of support or encouragement and posts soliciting input both had more than twice as many comments as those without.
  • Emotionally positive posts — including hope, optimism, humor, happiness, benefit finding and gratitude — did not predict any particular engagement, while negative ones generated a roughly threefold increase in comments.
  • Posts about the possible effects of diabetes generated more than twice as many shares as those without, while the use of external links predicted fewer likes and shares.

It’s clear that social media has the potential to be a significant resource for health communicators and for patients and their supporters. Rus said her study is a step toward a better understanding of how to make this growing form of health communication more effective.

“Ultimately we aimed to figure out which ingredients of online health messages were most likely to engage users,” she said. “Doing this will help us better understand if and how social media can best be used in health care.”

Rus’ study received special recognition from SBM, being chosen as a Citation Abstract and a Meritorious Student Abstract. An enlarged version of her abstract will be on display during one of the poster sessions at the San Antonio Marriott Rivercenter.

Cameron’s research focuses on health communications and psychosocial interventions for individuals who have or are at risk for illnesses like cancer, heart disease and diabetes. She’s part of a thriving group of UC Merced professors studying health psychology, a rapidly emerging field examining the interactions between behavior and physical health.

Cameron said this research could have significant implications in an area of ever-increasing importance.

“The big-picture question is how we can best harness social media to improve health care,” Cameron said. “Social media is a huge resource that people are increasingly using to gather health information. How can we shape these messages to increase engagement and encourage better health behaviors? If we want to be effective, we have to attract people to the message and have those people pass it around.”

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UCLA, Apple team on app to track breast cancer survivors’ experiences


Share the Journey: Mind, Body and Wellness after Breast Cancer available now on iTunes.

Patricia Ganz, UCLA

By Reggie Kumar, UCLA

UCLA cancer research pioneer Dr. Patricia Ganz and collaborators Apple and Sage Bionetworks today (March 9) announced the launch of Share the Journey: Mind, Body and Wellness after Breast Cancer, a patient-centered mobile app that empowers women to be partners in the research process by tracking their symptoms and successes.

Available for download today at the iTunes App Store, Share the Journey was developed by UCLA’s Jonsson Comprehensive Cancer Center, Penn Medicine, Dana-Farber Cancer Institute and Sage Bionetworks. The app is an interactive research study that aims to understand why some breast cancer survivors recover faster than others, why their symptoms vary over time and what can be done to improve symptoms.

Ganz, who is director of cancer prevention and control research at the Jonsson Cancer Center, was a key collaborator with Apple and Sage in developing Share the Journey, which marries science and technology by using surveys and sensor data on the iPhone to collect and track fatigue, mood and cognitive changes, sleep disturbances and reductions in exercise.

Share the Journey is one of five new apps being launched in conjunction with Apple’s ResearchKit, an open-source tool that serves as a streamlined hub for iOS apps that can help speed scientific progress toward cures by amplifying the patient voice in shaping research directions and outcomes.

Share the Journey shifts the center of care, healing and intervention into the hands of women who have survived breast cancer. Its creators say that collecting women’s experiences after breast cancer treatment will create a trove of data based on well-validated surveys and measurements that will be continuously improved upon based on the participants’ feedback.

Women who have undergone surgery, radiation or drug therapy to treat breast cancer often experience symptoms that affect their quality of life and impede recovery.

“We’re excited to use these new ResearchKit tools to expand participant recruitment and quickly gather even more data through the simple use of an app. The data it will provide takes us one step closer to developing more personalized care,” said Ganz, who also is a professor at the UCLA Fielding School of Public Health. “Access to more diverse patient-reported health data will help us learn more about long-term aftereffects of cancer treatments and provide us with a better understanding of breast cancer patients’ experience.”

Share the Journey is open to women between the ages of 18 and 80 who live in the United States, whether or not they have had breast cancer. Those who have not had breast cancer will contribute important data to the app that will help researchers understand which symptoms may be related to cancer treatment and which may be part of the normal aging process. The developers also are creating a Spanish-language version of the app and planning to expand the study to other countries.

“One reason to build these apps and run these studies is to see whether we can turn anecdotes into signals, and by generating signals find windows for intervention,” said Dr. Stephen Friend, president of Sage Bionetworks and a principal investigator for Share the Journey. “We’re most interested in disease variations and the hourly, daily or weekly ebb and flow of symptoms that are not being tracked and completely missed by biannual visits to the doctor.”

The platform is based on the concept that if individuals’ experiences were at the center of the research process, researchers working in virtual teams might be able to get efficient, inexpensive and ubiquitous ways of gathering information using websites, tablets or an app. This technology will allow Sage and other teams to include patients and other study participants as owners of their own data and equal partners.

“We need to better understand some of the long-term negative treatment effects, such as fatigue, that can be associated with the disease control benefits of cancer therapies. What are the biological mechanisms that underpin those effects and why some survivors are more vulnerable to those effects than others,” Ganz said.

“With Share the Journey, women can tell us when something’s wrong, and the app has the potential to capture valuable information on the patient experience. Our current cancer care system lacks the ability to predict or treat these chronic and enduring symptoms, but Share the Journey can set us on a path toward understanding why some people recover and some do not.”

In addition to Ganz, Apple and Sage were advised in development of Share the Journey by Drs. Ann Partridge and Judy Garber at Dana-Farber Cancer Institute, Dr. Kathryn Schmitz at the University of Pennsylvania Perelman School of Medicine and Dr. Susan Love at UCLA and the Dr. Susan Love Research Foundation.

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‘Lab-in-a-Box’ takes aim at doctors’ computer activity


Goal is to provide useful input on how to run the medical practice more efficiently.

By Doug Ramsey, UC San Diego

They call it “the Lab-in-a-Box.” According to Nadir Weibel, a research scientist in the Computer Science and Engineering (CSE) department at UC San Diego, inside the box are assorted sensors and software designed to monitor a doctor’s office, particularly during consultations with patients. The goal is to analyze the physician’s behavior and better understand the dynamics of the interactions of the doctor with the electronic medical records and the patients in front of them. The eventual goal is to provide useful input on how to run the medical practice more efficiently.

Very often physicians pay attention to information on a computer screen, rather than looking directly at the patient. “With the heavy demand that current medical records put on the physician, doctors look at the screen instead of looking at their patients,” says Weibel. “Important clues such as facial expression, and direct eye-contact between patient and physician are therefore lost.”

The first findings from the project are just-published in the February 2015 edition of the journal, Personal and Ubiquitous Computing and have been highlighted by the New Scientist magazine.  The Lab-in-a-Box solution could capture multimodal activity in many real-world settings, but the researchers focused initially on medical offices and the problem of the increasing burden on physician introduced by digital patient records.

The Lab-in-a-Box has been developed as part of Quantifying Electronic Medical Record Usability to Improve Clinical Workflow (QUICK), a running study funded by the Agency for Healthcare Research and Quality (AHRQ) and directed by Zia Agha, M.D. The system is currently being deployed at the UC San Diego Medical Center and the San Diego Veterans Affairs (VA) Medical Center.

The compact suitcase contains a set of tools to record activity in the office. A depth camera from a Microsoft Kinect device records body and head movements. An eye tracker follows where the doctor is looking. A special 360-degree microphone records audio in the room. The Lab-in-a-Box is also linked to the doctor’s computer, so it can keep track of keyboard strokes, movements of the mouse, and pop-up menus that may divert the doctor’s attention.

The greatest value of the Lab-in-a-Box, however, is in the software designed to merge, synchronize and segment data streams from the various sensors – assessing the extent to which a certain confluence of activity may lead to distraction on the part of the physician. For example, says Weibel, lots of head and eye movement would suggest that the doctor is multitasking between the computer and the patient.

Weibel and the UCSD/VA team will compare data from different settings and different types of medical practice to pinpoint those factors that lead to distraction across the board, or that affect only specific medical specialties. Their findings could help software developers write less-disruptive medical software. The researchers envision also deploying the Lab-in-a-Box permanently in a doctor’s office to provide real-time prompts to warn the physician that he or she is not paying enough attention to a patient. “In order to intervene effectively, we need to first understand the complex system composed by patients, doctors, and electronic medical record in depth, and this is what our study will finally yield.” says Weibel. Ultimately, as Weibel and his co-authors state in their original Personal and Ubiquitous Computing article, the Lab-in-a-Box “has the potential to uncover important insights and inform the next generation of Health IT systems.”

The Lab-in-a-Box work is funded by the Agency for Healthcare Research and Quality (AHRQ) in connection with quantifying electronic medical record usability to improve clinical workflow. The overall project runs through June 2016.

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Health Data Exploration project announces Agile Research Project awards


Recipients selected for capacity to advance use of personal health data for research.

By Tiffany Fox, UC San Diego

The Health Data Exploration project – based at the California Institute for Telecommunications and Information Technology (Calit2) and supported by the Robert Wood Johnson Foundation (RWJF) – has announced five recipients in its $200,000 Agile Research Project competition. The recipients, selected for their capacity to advance the use of aggregated and anonymous personal health data for research, are:

  • Rumi Chunara, New York University, “Keeping Pace: Dynamic Assessment of Environment and Exercise Using Personal Health Data,” $50,000
  • Julie Kientz, University of Washington, “When Am I At My Best? Passive Sensing of Circadian Rhythms for Individualized Models of Cognitive Performance,” $36,772
  • Emil Chiauzzi, PatientsLikeMe (company), “From Self-Monitoring to Self-Experimentation: Behavior Change in Patients with MS,” $37,700
  • Michelle De Mooy, Center for Democracy and Technology (non-profit), “Towards Privacy-Aware Research and Development in Wearable Health,” $50,000
  • Eric B. Hekler, Arizona State University, “Exploring Strategies to Improve Acceptability and Usability of a Just In Time Adaptive Intervention via Incorporation of Proximity Sensors and a Smartwatch,” $25,528

The Agile Research Project grants were created to encourage collaboration among members of the Health Data Exploration (HDE) Network, and to generate new training and learning opportunities for the field. Established in June 2014 with a $1.9 million grant from RWJF, the Network brings together companies, researchers and other partners to strategize, coordinate and experiment with ways to use personal health data for the public good.

“We were delighted at the response to our call for proposals, and very pleased to see these projects emerge as the ones selected,” said Dr. Kevin Patrick, principal investigator of the HDE project. “These hold great promise to move the field of personal health data research forward. Taken together these projects are exploring how to leverage anonymous and aggregated data from companies like Fitbit, Jawbone and RunKeeper in ways that improve our understanding of health.”

Chunara’s project, for example, will develop a platform for users of RunKeeper devices to provide their data, which will then be used to better understand the relationship between the built environment and how types and amounts of exercise vary over time.

De Mooy will work with Fitbit to explore how companies can integrate responsible privacy practices into their internal research to protect users’ privacy while improving products and fitness results for customers. As the market leader in connected health and fitness, Fitbit has always been committed to protecting consumer privacy and keeping data safe, and only reviews anonymous, aggregated data for research purposes.

Hekler’s project will explore how new and emerging technologies, particularly the smartwatch and home-based sensors, can be used to provide highly personalized and context-appropriate support for being physically active, including marking times when a person will not want to be disturbed.

The HDE leadership adopted an “agile development approach” for the competition, encouraging participants to conduct applied research projects on personal health data within a short time frame (two to six months). The participants are expected to use a timely and efficient methodology (in terms of program scoping, solicitation, peer review, contractual negotiations) that matches the pace of industry. The winning projects also leverage collaborations with one or more other members of the growing HDE Network of researchers and companies in the personal health data arena.

”We see a tremendous opportunity for personal health data to improve our understanding of the connections between community environments, individual behavior and health,” said Lori Melichar from RWJF. “We expect that the Agile Research Projects from this first round of funding will help us better understand how to use data in a practical and meaningful way in our efforts to build a national Culture of Health.”

The HDE project, and its associated Network, is supported by Calit2, which is based at both UC San Diego (where it is known as the Qualcomm Institute) and UC Irvine. Last year, HDE issued a report titled Personal Data for the Public Good, which found that many people who track health-related data are interested in sharing that data with researchers in medical and public health — provided adequate privacy controls exist.

The HDE Network brings together companies that collect and store personal health data, captured through the use of wearable devices, smartphone apps and social media, with researchers who mine the data for patterns and trends and other strategic partners. Through a set of research projects using personal health data, the Network will identify policies and best practices for using these new forms of data to produce transformative knowledge about health.

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Project uses tech to help boost vaccination rates in India


UC Berkeley students turn to crowdfunding to support further software development.

Emmunify co-founder Anandamoy Sen, now a UC Berkeley alumnus, holds a prototype of the portable record system. The chip, which contains vaccine records, is attached to a cell phone, ready to be synced to a health care worker’s mobile device. (Photo courtesy of Julia Walsh)

By Sarah Yang,  UC Berkeley

UC Berkeley students are creating a new tool that could soon make it far easier for children in developing nations to get life-saving vaccines.

As part of a project called Emmunify, the students simplify medical record-keeping by storing patient vaccination records on a portable chip that can then be accessed by a health care provider without the need for Internet access.

“Electronic health records are not new, but in developed nations, there is more IT infrastructure in place that allows some health providers and patients to have access to medical data,” says project team member Jennifer Sisto, a graduate student in public health. “We wanted something that would be effective in areas with limited healthcare data and IT resources, so we focused on providing crucial information, not setting up an entire electronic health record system.”

Emmunify was the brainchild of three Berkeley MBA students, who entered the project in the campus’s 2012 Hacking Health competition for the most innovative ideas in digital health. The project emerged as the grand prize winner, earning $2,000 in seed money to help build a better prototype and conduct feasibility testing.

With the leadership of faculty adviser Dr. Julia Walsh, adjunct professor of maternal and child health, the team connected with nonprofit health providers in India and began preparing to pilot-test the technology in New Delhi, where under half the children are fully immunized.

Rather than attempt to include a patient’s entire medical history on this chip, the Emmunify team kept the data focused on vaccination history.

“We know that raising vaccination rates among children raises school attendance, improves cognitive abilities, decreases malnutrition and increases earning power as adults,” says Walsh. “This is a simple tool to help get kids out of poverty.”

The Emmunify chip is attached to a user’s cell phone, and data is transferred to the health provider’s phone, tablet or other computer through near-field communication, a feature that is increasingly common in today’s mobile devices. A free app must be downloaded so the device can read the data on the chip. The researchers note that most families have access to at least one cell phone, and that the system is designed to be operable on various platforms.

“In many cases, families have to go to six different places at different times to get vaccinations for their children, and they are expected to keep the records on a form or other piece of paper that easily gets lost,” says Walsh. “This tool solves that problem by keeping the data on a phone and in an easily readable format.”

Emmunify could also be used to help direct resources where they are needed. Communities can track how many vaccines have been delivered and used, and health administrators will know when supplies are low and more vaccines are needed.

Ultimately, the system could help increase vaccination rates by sending patients automated voicemail reminders in their local language to remind them when their next shot is due.

“There is a lot of evidence from epidemiological studies that when it comes to basic healthcare, it’s not the new flashy gizmos that are important,” says Sisto. “We just want something basic that works. The tool can be really simple.”

The current team consists of two Berkeley alumni, including co-founder Anandamoy Sen, and six undergraduate and graduate students from Berkeley’s Department of Electrical Engineering and Computer Sciences and the School of Public Health.

Since Emmunify’s debut in 2012, the researchers have won additional funding through other contests, including Big Ideas@Berkeley, which is supported by several campus centers and institutes. This year, Big Ideas partnered with Indiegogo, a crowdfunding site, to help raise money for winning projects.

The Emmunify team hopes to raise $25,000 to support further software development and to deploy the technology in New Delhi.

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Social, behavioral data provide key info for electronic health records


IOM report details 12 social and behavioral factors that should be included in EHRs.

If social and behavioral data were included in electronic medial recorders if could help nurses and physicians have a better picture of the patient's health. (Photo by Cindy Chew)

By Juliana Bunim, UC San Francisco

Social and behavioral data provide crucial information about factors that influence health and effectiveness of treatment and should be incorporated into patient electronic health records (EHR), according to a new report from the Institute of Medicine (IOM).

The IOM committee, co-chaired by Nancy Adler, Ph.D., vice chair of the Department of Psychiatry at UC San Francisco and William Stead, M.D., of Vanderbilt University, was created in 2013 to conduct a two-phase study, first to identify the social and behavioral areas that most strongly determine health, and then to evaluate the measures that can most effectively be used in EHRs. Kirsten Bibbins-Domingo, M.D., of the UCSF Department of Medicine, also served on the committee.

The committee reviewed the evidence linking social conditions and health behaviors to health, which suggests that health behaviors such as alcohol use, and social conditions such as financial resource strain account for more than half of all premature deaths in the United States. They evaluated more than 70 relevant domains and subdomains, 17 of which were judged to be most valuable for inclusion in electronic health records.

“Having access to information about health-related aspects of a patient’s life in the electronic health record can enable clinicians to make more accurate diagnoses and engage more effectively with the patient in making treatment choices,” said Adler. “The information can also help health systems understand the needs of the populations they serve and design more effective services.”

The second phase of the report, published Nov. 13, details 12 social and behavioral factors that should be included in electronic health records.

The new report, Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2, recommends that providers use their EHRs to capture patients’ census information including race, ethnicity and address, in addition to tracking alcohol use, tobacco use and exposure, physical activity, educational attainment, social connections, depression, stress, financial resource strain, neighborhood and community compositional characteristics, and exposure to violence.

“When analyzed along with genomic and clinical data, standardized social and behavior information in EHRs can enable new discoveries regarding the etiology and progress of disease,” said Adler. “It can also point to the effectiveness of specific treatments for patients with different psychosocial and biological profiles.”

Read phase one of the report here.

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Bridging the gap in precision medicine


UCSF takes steps to solve the ‘last mile’ problem.

By Pete Farley, UC San Francisco

For entertainment giants such as Netflix and HBO, there’s an oft-cited concept known as “the last mile.”

It refers to the performance bottleneck that can arise in the short, final stretch of cable that links their vast, sophisticated server farms to the humble jack on a subscriber’s wall.

More than a decade after the immense promise unleashed by the completion of Human Genome Project, precision medicine has struggled with its own “last mile.” Despite major leaps in the field as a whole, the technical work needed to integrate a patient’s genomic information into the day-to-day practice of medicine has lagged far behind.

This month, UCSF is unveiling its bridge across that persistent gap.

Through its Genomic Medicine Initiative (GMI), UCSF has integrated data from a comprehensive cancer genetic testing program into the electronic medical records of patients at the Helen Diller Family Comprehensive Cancer Center. Not only does it allow for continuity of care with all testing and treatment results tied to the same electronic record, but it also allows physicians and researchers to identify larger patterns in the data that can lead to the development of better treatments.

“Many major medical institutions, including UCSF, have long had the science and the technology to generate genomic test results,” said Kristen McCaleb, Ph.D., program manager for the GMI. “The problem we’ve had is a lack of IT infrastructure to return those results to the clinicians who order the tests in a clearly actionable, doctor-friendly format.

This new project is a powerful new cloud-based software platform built in partnership with Palo Alto-based Syapse that seamlessly unites genomic testing and analysis, personalized treatment regimens, clinical data, and outcomes data, and –  crucially – integrates all of these features directly into APeX, UCSF Medical Center’s Epic-based electronic medical record (EMR) system.

“Genomics has the potential to dramatically improve patient care in oncology, but the full promise of precision medicine cannot be realized without a software platform to bring genomics to the point of care,” said Jonathan Hirsch, who founded Syapse six years ago as a 23-year-old Stanford University graduate student. “It is critical that genomic data be integrated with the patient’s medical history and presented to the clinician within the workflow of their EMR.”

One of the most comprehensive genetic tests for cancer

A major feature of the UCSF-Syapse partnership is that, beginning in the spring of 2015, UCSF oncologists will be able to order the “UCSF 500,” a panel of more than 500 gene mutations that have been implicated in a range of cancers. The test results will automatically feed into their adult and pediatric patients’ EMRs.

The assembly of the UCSF 500 wouldn’t have been possible without UCSF’s medical oncologists collaborating with Syapse to define which genomic alterations in which cancer types can be best treated with targeted therapies,” he said.

“The collaboration between the UCSF Helen Diller Family Comprehensive Cancer Center and Syapse is just one example of what the UCSF Genomic Medicine Initiative, launched two years ago, is doing to bring genomics to bear on clinical medicine,” said Robert Nussbaum, M.D., director of the GMI. “We are excited with the results and look forward to using it to improve the care of our patients here in the Cancer Center.”

When completed, test results from the UCSF 500 will automatically appear in a Syapse-powered window in the EMR, and from there, physicians can trigger consultation by a newly formed Molecular Tumor Board, a group of expert physicians and researchers that can recommend customized treatment plans for each patient.

These recommendations are recorded in Syapse alongside the physician’s decisions, and the patient’s clinical course will be continuously tracked. The resulting information is displayed to the physician in an easy-to-understand graphical format, and clinical notes and summaries are automatically populated in the EMR.

Learning from the data

Because the Syapse system is cloud-based, on Amazon Web Services (AWS), physicians and members of the Molecular Tumor Board can query a patient’s test results in real time against the latest entries in UCSF’s knowledge-base, which is also drawn from public genetics, oncology and clinical trial databases, as well as the current scientific literature. AWS was selected for its robust security, support for compliance with medical information privacy laws, scalability and redundancy, Hirsch said.

A de-identified version of each patient’s clinical history from APeX and information on how patients respond to treatments is simultaneously added to a dedicated clinical research knowledge-base within Syapse, so future recommendations of the Molecular Tumor Board for any patient’s case will always be informed by the latest clinical experience.

Because APeX is based on Epic, a widely used EMR system, the new platform is easily scalable, and could easily capture clinical data from many medical centers in a consistent, easily accessible form, said Hirsch.

“Our top priority is benefitting our patients today, but if we can begin to collect and leverage the knowledge we gain from each positive patient outcome, and combine our experience with that of others doing similar work worldwide, future patients may be able to sidestep conventional therapies and go directly to the best targeted therapy as a first-line treatment,” McCaleb said.

“And that would be truly powerful.”

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New software platform bridges gap in precision medicine for cancer

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Software platform bridges gap in precision medicine for cancer


Cloud-based system seamlessly integrates ‘actionable’ genomic insights into EMR.

UC San Francisco has unveiled a new cloud-based software platform that significantly advances precision medicine for cancer. Built in partnership with Palo Alto-based company Syapse, the new platform seamlessly unites genomic testing and analysis, personalized treatment regimens, and clinical and outcomes data, crucially integrating all of these features directly into UCSF’s electronic medical record (EMR) system.

The project was a collaborative venture of UCSF’s Genomic Medicine Initiative (GMI) and the UCSF Helen Diller Family Comprehensive Cancer Center.

“Many major medical institutions, including UCSF, have long had the science and the technology to generate genomic test results,” said Kristen McCaleb, Ph.D., program manager for the GMI. “The problem we’ve had is a lack of IT infrastructure to return those results to the clinicians who order the tests in a clearly actionable format. This new platform creates a doctor-friendly report that physicians can use to put genomics into the context of a patient’s clinical history, to receive guidance based on our institution’s best practices, to query for additional information — including outcomes of prior UCSF patients — and, ultimately, to provide better care for their patients.”

Jonathan Hirsch, Syapse president and founder, said that tight integration with APeX, UCSF’s Epic-based EMR, makes the new platform uniquely powerful. “Genomics has the potential to dramatically improve patient care in oncology, but the full promise of precision medicine cannot be realized without a software platform that brings genomics to the point of care,” said Hirsch. “It is critical that genomic data be integrated with the patient’s medical history and presented to the clinician within the workflow of their EMR.”

Beginning in the spring of 2015, UCSF oncologists will be able to use the new system to order the “UCSF 500,” a panel of more than 500 gene mutations that have been implicated in a range of cancers, with tools built directly into their adult and pediatric patients’ EMRs. When UCSF 500 test results are available, they will automatically appear in a Syapse-powered window in the EMR, and from there, physicians will be able to trigger consultation by a newly formed Molecular Tumor Board, which can recommend customized treatment plans for each patient.

The Tumor Board’s recommendations are recorded in Syapse alongside the physician’s decisions, and the patient’s clinical course will be continuously tracked, with the resulting information, including clinical notes and summaries, displayed to the physician in an easy-to-understand graphical format in the EMR.

Hirsch said that the assembly of the UCSF 500 wouldn’t have been possible without the energetic involvement of UCSF’s medical oncologists. “The clinicians at UCSF have been highly involved in defining what ‘actionability’ truly is — knowing which genomic alterations in which cancer types can be best treated with targeted therapies. They’re sitting down and doing the hard work of creating a cancer genomics knowledge-base, which has allowed Syapse to design automated clinical decision support that reflects UCSF’s leading oncology care.”

Because the Syapse system is cloud-based, implemented on Amazon Web Services (AWS), physicians and members of the Molecular Tumor Board can query a patient’s test results in real time against the latest entries in UCSF’s knowledge-base, which also draws from public genetics, oncology and clinical trial databases, as well as the current scientific literature. Hirsch said AWS was selected for its robust security, support for medical privacy-law compliance, scalability and stability.

A de-identified version of each patient’s clinical history from APeX and information on how patients respond to treatments is simultaneously added to a dedicated clinical research knowledge-base within Syapse, so future recommendations of the Molecular Tumor Board for any patient’s case will always be informed by the latest clinical experience. Because APeX is based on Epic, a widely used EMR system, the new platform is easily scalable, and could easily capture clinical data from many medical centers in a consistent, easily accessible form, Hirsch said.

“Our top priority is benefiting our patients today, but if we can begin to collect and leverage the knowledge we gain from each positive patient outcome, and combine our experience with that of others doing similar work worldwide, future patients may be able to sidestep conventional therapies and go directly to the best targeted therapy as a first-line treatment,” McCaleb said. “And that would be truly powerful.”

Robert Nussbaum, M.D., the Holly Smith Distinguished Professor in Science and Medicine and GMI director, said, “This collaboration is just one example of what the GMI is doing to bring genomics to bear on clinical medicine. The partnership is the product of a large multidisciplinary team of oncologists, molecular pathologists, and IT specialists. We are excited with the results and look forward to using it to improve the care of our patients.”

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RCSB Protein Data Bank launches mobile app


UC San Diego helps develop free app to access 100,000+ molecule structures.

The RCSB Protein Data Bank (PDB), which recently archived its 100,000th molecule structure, has introduced a free mobile application device that enables users from the general public and expert researchers to quickly search and visualize the 3-D shapes of proteins, nucleic acids and molecular machines.

RCSB PDB Mobile is freely available from the Apple App Store and Google Play. More information is at www.rcsb.org.

“As the mobile web is starting to surpass desktop and laptop usage, scientists and educators are beginning to integrate mobile devices into their research and teaching,” said Peter Rose, a researcher with the San Diego Supercomputer Center (SDSC) at UC San Diego and Scientific Lead with the RCSB PDB. “In response, we have developed this application for iOS and Android mobile platforms to enable fast and convenient access to RCSB PDB data and services.”

RCSB PDB is a vital resource for biological research and education worldwide that provides enhanced access to information about the 3-D structures of nucleic acids, proteins, and large molecular machines contained in the Protein Data Bank (PDB) archive. Located at Rutgers, The State University of New Jersey, and the UC San Diego’s SDSC/Skaggs School of Pharmacy and Pharmaceutical Sciences at UC San Diego, RCSB PDB develops query, visualization and analysis tools that help researchers understand many facets of biology and medicine.

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UCLA doctors now available via LiveHealth Online


Telehealth solution increases access to UCLA physicians.

Doctors are available on LiveHealth Online 24 hours, 365 days a year, including holidays, and UCLA physicians will join the pool of doctors for users to choose. (Photo by Anthem Blue Cross)

Doctors from UCLA Health System will be available on your smartphone, tablet or laptop beginning this week through LiveHealth Online, a telehealth solution for business travelers, busy parents, students away at college or anybody else who needs non-emergency medical attention when their own doctors are not available.

“LiveHealth Online represents a true shift in health care delivery by using technology to make health care easier to access and more consumer friendly,” said John Jesser, vice president of provider engagement strategy for Anthem Blue Cross. “We’re delighted to have UCLA doctors join us to provide high-quality and needed medical care to consumers using the LiveHealth Online mobile app and website.”

Doctors are available on LiveHealth Online 24 hours, 365 days a year, including holidays, and UCLA physicians will join the pool of doctors for users to choose. When consumers select their physician for the visit, they will be able to see which physicians are part of UCLA Health System. Due to demand or other circumstances, a UCLA doctor may not always be available for a consumer to select; in those cases, users can choose another board-certified physician or wait until a UCLA doctor becomes available. UCLA doctors are not expected to be online 24 hours a day.

“What we need in health care is multiple avenues of access,” said Dr. Samuel Skootsky, chief medical officer of the UCLA Faculty Practice Group and Medical Group. “Showing up in a doctor’s office is one way. You can show up in an ER, but that’s expensive and it’s unnecessary for many simple problems. You can also show up in an urgent care facility. LiveHealth Online is another, more convenient way for people to access health care. We think this has value and that patients find this convenient, and I suspect that this kind of connection with the health care system will only grow over time.”

LiveHealth Online offers a secure means of reaching board-certified, primary care doctors from almost anywhere, making it ideal for consumers who find it inconvenient to leave work or home to go to a doctor’s office.

For non-urgent medical conditions, an online doctor visit can be more convenient and affordable than a visit to the emergency room or an urgent care clinic. Patients can initiate video visits from their home or workplace at any time through a computer, smart phone or tablet. The cost is $49 per visit, but it may be a covered benefit for Anthem Blue Cross members.

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