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Bringing the Technology Revolution to Caregiving

Sep 17, 2015, 10:32 AM, Posted by David Adler

The Atlas of Caregiving is using new methods to uncover the unique challenges and rewards that caregiving presents, from economic, emotional, and mental stressors to the moments of compassion, joy, and intimacy.

An elderly couple, the woman in a wheelchair sitting in front of a large window showing a view of mountains.

We are at a moment in history when technology is allowing us to collect information about ourselves more effectively and reliably than ever before, from the cell phone in our pocket to the Fitbit on our wrist. This technology can help us device wearers—and even the health care providers, researchers and designers we share our data with—track behaviors related to health and figure out how to improve them. But how can this technology be used to help all of us understand and shape the work of family caregivers?

It is widely believed that family caregivers frequently underestimate how long they spend caring for loved ones and the level of stress induced. This is why RWJF is supporting the Atlas of Caregiving project, which will work with 12 families to collect data using technology with the goal of getting a more accurate picture of how caregivers spend their time, and the physical and mental impact of those activities.

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Harnessing the Power of Shared Data Across Sectors

Jul 24, 2015, 9:47 AM, Posted by Hilary Heishman

Silos of data need to be opened up across sectors to reveal hidden connections with the potential to improve health outcomes. Here's how RWJF is investing in innovative solutions.

Shared data across sectors

A year and a half ago, the Robert Wood Johnson Foundation wrote about the groundswell of interest in connecting health care systems with other organizations and their local communities to build a Culture of Health. Since then, the Data4Health listening tour and the launch of Data Across Sectors for Health (DASH), have given more evidence to the importance of data—or the flow of information—in creating and benefitting from these connections. With work the Foundation and others across the country are doing, the “connections checklist” is increasingly taking shape.

In communities large or small, data can become a bridge between one organization’s need and a very different organization’s solution. In Rochester, New York, the business community took a hard look at a most alarming expense they faced—soaring health care costs. In 2009, the Rochester Business Alliance entered into a strategic partnership with the Finger Lakes Health Systems Agency to build a healthier workforce and lower costs. Analyzing data about community health issues revealed a shared concern about high blood pressure. The Agency developed community-based interventions that the Business Alliance and local businesses could use to help their employees and the wider community understand the importance of controlling their blood pressure. Working together, this collaboration has improved the county’s blood-pressure control rate by over 7%.

Underlying this community connection is a data connection between health care and the business community that brings root-cause analysis and rapid-cycle evaluation together to really focus attention towards groups of people who are at highest risk of uncontrolled hypertension. The Agency created a registry of information from electronic health records (EHRs) to fully understand the situation and monitor any changes brought about by their activities. Careful stewardship of sensitive information, real results, and the tantalizing promise of further benefits are sustaining and expanding this partnership.

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Using Social Data to Build Our Evidence Base

Jul 16, 2015, 2:22 PM, Posted by Alonzo L. Plough, Lori Melichar

Social media offers an exciting opportunity to innovate in health research—but the social data sandbox could use more players to conduct research, share datasets, and generate ideas about what we should be studying.


What do our tweets reveal about our health? What can we learn from Twitter about the health of those in our community? Can analysis of Twitter activity help predict an epidemic like the flu weeks before a community is inundated with cases?

Nicholas Christakis, director of the Human Nature Lab at Yale University and Thomas Keegan, Deputy Director of the Yale Institute for Network Science are conducting pilot studies in San Francisco and Boston to explore these questions and more. With funding from RWJF, Christakis’s lab uses Twitter posts that include mention of flu symptoms to map how the virus spreads outward from individuals to family, friends, and others in their social networks. This mapping method, which identifies central “influential” individuals, offers the possibility of early detection of the flu and therefore early intervention to prevent its spread. In addition to giving health officials and medical personnel a valuable head-start in responding to and preventing the spread of contagious illness, this kind of insight could also help people make decisions about their own behavior, including getting flu vaccines and being more diligent about hand washing.

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A New World of Healthy Design–That You Wear

Jul 6, 2015, 10:32 AM, Posted by Sheree Crute

Wearable technologies have the power to make communicating with health care providers seamless and easy—opening up a new frontier for data tracking and treatment.

Google glass Image via Giuseppe Costantino

Gary Wellman is living the dream. Every morning, he is treated to the nearly cloudless sky that frames Arizona’s nearby Santa Rita Mountains. A retired basketball coach, 72-year-old Wellman happily shares that he “lives on a golf course in Green Valley,” and likes to keep busy. “You can’t sit around when you have arthritis and diabetes like I do.”

About a year ago, Wellman hopped out of his golf cart, stood up to reach for his clubs and found himself on the ground. He suffered from numbness in his feet, a common symptom of diabetes. After that day, Wellman says, “I began to fall a lot on the course. My doctors did all kinds of tests and came up with nothing.”

That is until Wellman’s physician suggested he participate in an experimental treatment for loss of balance conducted in the lab of Bijan Najafi, PhD, a surgeon and director of the Interdisciplinary Consortium on Advanced Motion Performance at the University of Arizona.

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Clearing the Air in Louisville through Data and Design

May 13, 2015, 12:44 PM, Posted by Alonzo L. Plough

Louisville, Kentucky ranks among the poorest in air quality and highest in asthma rates among U.S. cities. A new art installation from Propeller Health shows residents real-time changes in the city's air quality, equipping them with the data to reach their goal of becoming one of the healthiest cities by 2020.

Airbare air quality installation in Louisville, Kentucky

I stand in front of an intriguing art installation on a busy street corner in downtown Louisville, KY, and visualize the invisible. It’s a bright orange steel kiosk outfitted with an interactive touch screen that allows passersby to “see” how air pollution levels change around the city in real time while also learning how these pollutants impact the severity of asthma symptoms. Called AirBare, the installation project was funded by RWJF and represents a unique collaboration between visual artists, big data analysts and local health advocates. By “popping” virtual bubbles on the screen, users find out what causes air pollution and what it will take to reverse it. This is relevant information for residents of Louisville, a city that consistently ranks among the lowest in air quality in the nation and has one of the highest rates of asthma and other respiratory conditions.

My visit to the AirBare installation coincided with a conference held in Louisville in March that brought together economists, health policy folks, food experts and, remarkably, Charles, the Prince of Wales, to examine the issue of air quality and the larger concept of sustainability in this Ohio River Valley city. The Prince, a longtime advocate for environmental issues with connections in Louisville, added star power to the Harmony & Health conference, sponsored by the non-profit Institute of Health Air Water & Soil. But there is plenty else to be excited about in Louisville. Under the leadership of Mayor Greg Fischer, city agencies have collected reams of data on air quality, health outcomes, life expectancy, income inequality, and unemployment, among many other measures. What has emerged is a far better picture of the tough environmental and socioeconomic issues impacting the health and wellbeing of Louisville’s 600,000 residents, and a serious and concerted commitment to build a culture of health.

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Use Data for Health, Not for Data’s Sake

Apr 2, 2015, 10:10 AM, Posted by Hilary Heishman

Using data for health is most powerful when you know what problems you're trying to solve. The latest Data for Health report looks at how we can harness that data to source community solutions.

Financial chart, close-up

A few months ago, community members and leaders from an array of local organizations came together in Philadelphia, Des Moines, San Francisco, Phoenix, and Charleston, to talk about ways they and others around them use data to improve health—as well as the hopes, concerns, and challenges they face in collecting and sharing data.

After listening to and reading about these conversations that were part of the Data for Health listening series, this piece of practical wisdom captured in a new report on what we learned from those meetings jumped out at me:

The real question is not 'What data do you want to collect?' but rather, 'What problem do you want to solve?'

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Imagining the Future of Health Data

Mar 23, 2015, 3:15 PM, Posted by Susannah Fox

The possibilities to use data for health feel endless when you allow communities to dream out loud. Those dreams may soon become reality with upcoming recommendations from the Data4Health Advisory Committee.


I have found that the only way to understand an emerging field is to listen, to set aside assumptions, and to let people’s own hopes and fears guide the discussion. That is the genius of the Data4Health project, which recently completed a five-city listening tour and returned with a set of insights that will benefit everyone who cares about the future of health and health care.

On April 2nd, during an event in Washington, D.C., the Data4Health Advisory Committee will release a report based on these insights with a set of comprehensive recommendations for how data can be collected, shared, protected and translated in ways that benefit individuals and communities.

My favorite quote in the report captures the importance of staying humble in the face of all that we do not know:

The complexities of people’s lives don’t always fit well in a drop down box.

We can make educated guesses about people’s interests in collecting and sharing health data, but until we give them a chance to dream out loud, we don’t know what is possible.

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It’s Not Just the Watch: Apple Also Helping Cancer Patients

Mar 9, 2015, 11:21 AM, Posted by Catherine Arnst

Laurie Becklund is a former Los Angeles Times correspondent who died of breast cancer. Laurie Becklund (photo by Bob Barry)

“I am dying literally, at my home in Hollywood, of metastatic breast cancer ... For six years I’ve known I was going to die, I just don’t know when.”

That was written by renowned journalist Laurie Becklund, a former Los Angeles Times correspondent, shortly before she died on Feb. 8 at age 66. Her powerful Los Angeles Times essay was not a lament, however, but a fierce call to action for better cancer research; informed by much, much better data.

As she noted, each cancer patient’s disease is unique, yet there is no system in place to gather data on these tens of thousands of individual diseases. If there were, the data would enable both lab research and clinical trials to be far more efficient, and effective. “The knowledge generated from our disease will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics, and what treatments did and didn’t help them,” Becklund wrote. “In the big data era, this void is criminal.”

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How Data Will Help Me Keep My Resolution

Jan 27, 2015, 10:54 AM, Posted by Emmy Ganos

Pioneering the Use of Personal Health Data

It's a brand new year and like many Americans, I'm thinking about New Year’s resolutions—specifically, fitness and exercise resolutions. People who know me well know how I feel about working out (Hint: I don't like it. Or do it). But I have lots of good reasons for wanting to start. I turned 30 this year, so I’m starting to age out of that Young Invincible demographic (#GetCovered), and realizing that I am, in fact, “vincible.” As I get older, and watch my parents age, it's starting to hit home that getting to a particular shape or size really isn't the point. The point is getting my heart and body in the best shape I possibly can.

So this year, New Year’s resolution time feels a little different. And as I start thinking about making some changes, I’m reflecting back over the last two Data for Health listening sessions I attended in Charleston and San Francisco. As a result, I’ve decided that it’s time to think about setting my New Year’s resolutions in an entirely different way--by using data.

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Open Health Data: How To Go for the Gold?

Jan 16, 2015, 1:25 PM, Posted by Susan Dentzer

Dr. Eric Topol Eric J. Topol, M.D.

In his new book, The Patient Will See You Now, Eric Topol, MD, invokes the famed Arabian folk tale One Thousand and One Nights, in which the poor woodcutter Ali Baba utters "Open Sesame" to unseal the cave where thieves have a treasure of gold coins. Topol asks "whether we, like Ali Baba, can breech the gate that keeps us from [health and health care] data, to a new world of openness and transparency."

It's worth remembering that, in the folk tale, Ali Baba does get rich — but after fighting over the gold, almost everybody else ends up dead.

So how do we ensure that the story of increasingly open health data has a more universally happy ending?

It won’t be easy, and Topol acknowledges the quandaries of dealing with the "gold" — the enormous flow of health data already under way.

Among the issues:

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