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A Brave New ‘Post-Mendelian’ World

Dec 12, 2014, 9:00 AM, Posted by Lainie Ross

Lainie Ross, MD, PhD, is a 2013 recipient of the Robert Wood Johnson Foundation (RWJF) Investigator Award in Health Policy Research and a 2014 Guggenheim Fellow. During her fellowship year, she will work on a book tentatively titled, From Peapods to Whole Genomes: Incidental Findings and Unintended Consequences in a Post-Mendelian World.

Lainie Ross

Human Capital Blog: What are some of the incidental findings and unintended consequences you will discuss in your book?

Lainie Ross: First, let me explain what I mean by “incidental findings.” Incidental findings refer to unanticipated information discovered in the course of medical care or research that may or may not have clinical significance. They are not unique to genetics. In some studies, up to one in four diagnostic imaging tests have incidental findings, although most do not have immediate clinical consequences.

One example of an incidental finding that I discuss in the book involves incidental findings uncovered while screening candidates for research participation. This can range from discovering high blood pressure (known as the “silent killer”) to extra sex chromosomes in people who volunteer as “healthy controls.” This raises the question of what is a clinically significant or “actionable” finding, and what information should be returned to the research participant. These types of questions are critical, especially because many research consent forms have historically stated that “no results will be returned.”

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Data for Health: Live from Charleston

Dec 2, 2014, 6:21 PM, Posted by Renee Woodside

The Robert Wood Johnson Foundation had been running a five-city listening tour to learn how to better use Data for Health; the final stop was Charleston, SC, on December 11.  

While the cities we have visited have all been very different the first U.S. capital of Philadelphia to Des Moines, the corn capital; from the desert city of Phoenix to San Francisco, city by the bay—all are committed to using data and information to help improve the health of their communities.

One of the things I keep hearing is that health data needs to be communicated in a way that’s easy for a patient to interpret. I sure can relate to that! I can remember being in the hospital, on full bed rest for a week before I had my twins. And although I generally had confidence in my doctors, it was a little scary to not totally understanding why they decided to schedule my C-section early. They talked about the chances of this and the chances of that, but it was not clear to me what they were really saying, and quite frankly, in such a stressful situation, I wasn’t thinking very clearly. 

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Health Data Outside the Doctor’s Office

Dec 2, 2014, 9:46 AM, Posted by Jon White, AHRQ , Karen DeSalvo, HHS/ONC, Michael Painter

A man rides a bike, with a child on a bike kid trailer behind him. "... if a city wants to plan bike infrastructure, they could invest millions in conducting studies into where bike lanes should go, or they instead could quickly access information generated by bikers, such as Map My Ride or Strava, to see where people are actually riding."

Health primarily happens outside the doctor’s office—playing out in the arenas where we live, learn, work and play. In fact, a minority of our overall health is the result of the health care we receive. If we’re to have an accurate picture of health, we need more than what is currently captured in the electronic health record.

That’s why the U.S. Department of Health and Human Services (HHS) asked the distinguished JASON group to bring its considerable analytical power to bear on this problem: how to create a health information system that focuses on the health of individuals, not just the care they receive. JASON is an independent group of scientists and academics that has been advising the Federal government on matters of science and technology for over 50 years.

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Data4Health: Live from San Francisco

Nov 20, 2014, 3:47 PM, Posted by Culture of Health Blog Team

Leading national experts discussed using data to build a Culture of Health.

DATE: Thursday, December 4
TIME: 12 p.m.—1:30 p.m. ET/9 a.m.–10:30 a.m. PT

SPEAKERS:

  • Karen DeSalvo, acting assistant secretary for health, US Department of Health and Human Services
  • Andrew Rosenthal, group manager for platform + wellness, Jawbone
  • Gary Wolf, co-founder, Quantified Self Movement
  • Roni Zeiger, CEO, Smart Patients

Blog post by Ivor Horn, MD, Advisory Committee Co-Chair and San Francisco MC

It has truly been a fun experience working with the team at RWJF on the Data for Health Initiative. Since we embarked on this journey at the end of October we have been moving at break neck speed to learn how people throughout the country want to use data to build a Culture of Health. As co-chair of this initiative with Dave Ross, director of the Public Health Informatics Institute, I have had the honor of being a “fly on the wall” during discussions in three amazing cities (Philadelphia, Phoenix, and Des Moines). Each session started with insights from local leaders actively engaged in using data to better understand the communities and populations that they serve. But the power of the meetings has really been the content of the Q&A sessions after the talks. This is when people in the room–the folks with “boots on the ground”–give their input.  

 

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Putting the People in Data

Nov 18, 2014, 8:00 AM, Posted by Matthew Trujillo

Data for Health Phoenix Photo

I recently had the privilege of attending the Data for Health listening sessions in Phoenix and Des Moines, initiatives that explore how data and information can be used to improve people’s heath. The key lesson I took away: We cannot forget about the human element when we think about health data and technology.

I have to be honest and admit that I attended these sessions with some admittedly naïve expectations. I half expected that the Des Moines airport would be in the middle of a corn field and that the conversation in the two sessions would focus on the technical side of health data – with people using terms like interoperability and de-identification. But I quickly learned that Des Moines is a flourishing city full of great running paths and people who are passionate about health data. The conversations in both cities actually focused not on the technical side of health data but rather on the human side.

While health data and technology are complex, the complexity of the the individuals and communities who generate and use them are far greater. At first glance, this human complexity may seem like the source of many health data problems but, as pointed out by the session attendees, it is actually the source of many health data solutions:

 

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Is Louisville, Kentucky, the New Face of Asthma Healthography?

Nov 17, 2014, 11:00 AM, Posted by Meredith Barrett

Meredith Barrett

Leaders in Louisville, Kentucky, know first-hand that where you live and work affects your health and well-being. During a special session at the American Public Health Association’s meeting this week in New Orleans, we explore how the air quality in Louisville neighborhoods impacts the health, economy and overall vibrancy of the community. And we’ll highlight how Louisville is the poster child for tackling tough issues like asthma head-on, top-down and bottom-up, through data and collaboration among individual residents, corporate execs, community organizers and public leaders. 

American Public Health Association Meeting & Expo

Asthma attacks are sneaky, expensive and debilitating, yet almost entirely preventable.

Asthma is one of the most common and costly chronic diseases in the United States, affecting more than 8 percent of the U.S. population. Despite decades of research and the development of effective treatments, rates of morbidity have not declined and health care costs reach more than $50 billion a year. Asthma also leads to more than 13 million missed days of school and 10 million missed days of work, negatively affecting educational achievement, employee productivity and regional business growth. But the most frustrating part is that a large proportion of these hefty impacts could be avoided with improvements in self-management, community policy and advances in digital health care.

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Data for Health: Learning What Works for Philadelphia

Nov 5, 2014, 12:37 PM, Posted by Susannah Fox

Philadelphia City Hall

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Data for Health—Coming to a Town Near You

Oct 16, 2014, 6:00 AM, Posted by Michael Painter

Listen Image by Ky Olsen (CCBY)

We have some questions for you—questions, that is, about health information. What is it?  Can you get it when you need it? What if your community needed important information to make your town or city safe or keep it healthy? How about information about your health care? Can your doctors and nurses get health care information about you or your family members when they need it quickly?

I came across a recent Wall Street Journal article about a remarkable story of health, resilience and survival in the face of an unimaginable health crisis—a Liberian community facing the advancing Ebola infections in their country got health information and used it to protect themselves. When the community first learned of the rapidly advancing Ebola cases coming toward them, the leaders in that Firestone company town in Liberia jumped on the Internet and performed a Google search for “Ebola”. From that Internet search they learned how to protect themselves. Then those brave people acted on that new information—that new knowledge. They did a number of things like use the information to build quarantine and care facilities as well as map the advancing illness cases in their town—so they could be smart about identifying, quarantining and caring for those infected with the virus—and then stop it. Months later, this town is now essentially a lone bright spot of health in a country devastated by death and illness. Why?  Because the leaders of that town used technology to get the critical health information they needed, and then they used it to act.

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Reflecting on the Great Challenges at TEDMED

Oct 6, 2014, 11:19 AM, Posted by Paul Tarini

TEDMED 2014 photo w/Ramanan Laxminarayan Photo courtesy of TEDMED

Here at RWJF, we are working to build a Culture of Health for all. This is an audacious goal, and one that we clearly cannot accomplish alone. We need to collaborate with thinkers and tinkerers and doers from all sectors–which is why we sponsored TEDMED’s exploration of the Great Challenges of Health and Medicine at its 2014 events.

Specifically, RWJF representatives helped facilitate conversations around six Great Challenges: childhood obesity, engaging patients, medical innovation, health care costs, the impact that poverty has on health, and prevention. We spoke with hundreds of people in person and online (Get a glimpse of the conversation here).

We asked three TEDMED speakers from RWJF's network to reflect on their experience at TEDMED and share some of the stimulating ideas they heard. We hope you'll add your ideas in the comments. 

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Bringing in Diverse Perspectives to Build a Culture of Health

Sep 24, 2014, 9:00 AM, Posted by Lori Melichar

Susannah Fox Susannah Fox, RWJF Entrepreneur in Residence

Entrepreneurs start from a place of passion, then work tirelessly to make others see their vision. I'm excited to announce that Susannah Fox will be pushing all of us at the Foundation to behave more like entrepreneurs.

This month, Fox began a new role as the Foundation's next entrepreneur in residence. She was previously an associate director at the Pew Research Center’s Internet & American Life Project, where she combined traditional survey research with field work in online patient communities. She excels at using data and storytelling to compel policymakers, consumers, and entrepreneurs to understand and discuss key health care issues.

To build a Culture of Health in the United States, we have to consider new approaches and ways of thinking. We need the creativity, imagination, and efforts of people from a range of backgrounds and industries to develop innovative solutions to our most pressing health and health care challenges. A health and technology researcher and trend spotter, Fox will be a valuable asset to these efforts.

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