Author Archives: Nancy Barrand

What's Next Health: A Primer On Epigenetics

Jul 16, 2014, 9:00 AM, Posted by Nancy Barrand

Randy Jirtle Photo courtesy of Duke University Medical Center

Each month, What’s Next Health talks with leading thinkers with big ideas about the future of health and health care. Nancy Barrand, RWJF’s senior adviser for program development, hosted Randy Jirtle, senior scientist at the University of Wisconsin-Madison McArdle Laboratory, for a fascinating discussion about his work in epigenetics. Randy’s pioneering work in this field holds far-reaching implications for understanding and addressing the interplay between our genes and our environment. Randy answered follow up questions from Nancy to help lay out the basics behind epigenetics and what it might mean for our work moving forward. (Randy’s opinions are not necessarily those of the Robert Wood Johnson Foundation.)

Nancy Barrand: What is epigenetics?

Randy Jirtle: Epigenetics simply means above the genetics, and it refers to the study of heritable changes in gene function that occur without a change in the DNA sequence. So we now know that chemical modifications of the DNA, and the histones the DNA wraps around, actually determine whether genes are functional or not functional. These chemical modifications can be caused by environmental factors that we are exposed to, such as the nutrients we eat—or those our mother ate—or stress at critical junctures in our development.

Understanding how a single epigenetic change can totally disrupt the action or expression of a gene is providing us for the first time with information that will ultimately allow people to prevent diseases and conditions from ever happening, rather than just treating them after they occur.

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Big News in Big Data: NIH Launches Largest and Most Diverse Genetics Database Ever Created

Feb 26, 2014, 7:21 PM, Posted by Nancy Barrand

Eighteen years ago this month, Big Data had a cultural coming out party when IBM's Deep Blue defeated international chess champion Gary Kasparov in a game. Gary Kasparov was a chess genius. But Deep Blue could mine the records of 700,000 grandmaster chess games and evaluate 200 million positions per second. The famously nimble Kasparov ultimately could not match the brute computing force of Deep Blue. 

This week we mark another historic milestone in Big Data history. This time, there is more at stake than bragging rights from a chess competition. 

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Dr. Sanjeev Arora Presents Project ECHO at TEDx Albuquerque

Oct 3, 2013, 5:00 PM, Posted by Nancy Barrand

Project ECHO is working to improve health care for underserved populations all over the world, and to do it fast,” Dr. Arora said during his TEDx presentation in Albuquerque last month. With more than 2,000 people in the room, Dr. Arora described how the ECHO model began in rural New Mexico and how it is quickly spreading around the globe to help clinicians on the front lines of care learn new skills and do more for more patients. Watch Dr. Arora’s TEDx presentation and hear his vision for the future.

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The Global Cardiovascular Risk Score: A New Performance Measure for Prevention

Apr 12, 2013, 11:00 AM, Posted by Nancy Barrand

In a recent post in The Health Care Blog, Archimedes Founder David Eddy, MD, makes a strong case for the new Global Cardiovascular Risk score (GCVR), because it will keep providers more focused on preventing disease and give them a more accurate and meaningful target to shoot for to keep patients healthy. This project, to test the merits of a new way to measure the health outcomes of patients with heart disease and diabetes, is an example of a truly disruptive innovation that could be a real game-changer for measuring quality. Read Dr. Eddy’s full post below.

-Nancy Barrand  

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Building Big Data, One Swab at a Time

Mar 14, 2013, 2:00 PM, Posted by Nancy Barrand

Watch PBS NewsHour's feature, "Researchers Aim to Unlock Genetic Data Goldmine for Vital Medical Information," on the Kaiser biobank to learn more about how Catherine Schaefer, Neil Risch and 200,000 Kaiser members are accelerating the pace of medical research and bringing the future potential of genomics into the here and now.

When the Robert Wood Johnson Foundation launched the Pioneer Portfolio, my colleagues and I asked ourselves what fields might produce the greatest potential game-changers for health and health care. Genomics was at the top of the list. The human genome had been mapped and fantastic discoveries had begun to blossom, but a true era of personalized medicine still seemed too far off.

So we set out to do what Pioneer does best. We explored and learned. We networked.  We asked a lot of questions.  And we began to hunt down ideas.

On March 12, PBS NewsHour did a feature story on one of the big ideas that came out of that process: the world’s largest, deepest, and most diverse “biobank.” It presented a good opportunity to share the backstory. 

 

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Meta Care

Jul 18, 2012, 4:30 PM, Posted by Nancy Barrand

Nancy Barrand B&W close Nancy Barrand

“You need a logarithmic methodology to expand capacity to match the logarithmic increase in knowledge that is occurring worldwide.”

That’s how Dr. Sanjeev Arora described the force multiplication theory at the core of Project ECHO during last week’s launch of the ECHO model throughout the VA. It’s also a call to action for how we approach medical training and health care delivery.

Knowledge is power, yes, but in health care, knowledge is life-saving. Knowledge is more pain-free hours in the day. Knowledge is quality of life.

We need to think differently about how we share knowledge.

Let’s allow Dr. Arora to walk us through the math:

"More knowledge has been created in the last 100 years than was created in the last 5,000. And more knowledge will be created in the next 50 years than has ever occurred before. So what this leads to is a very complex issue—you have an explosion of best practices and how do you take these best practices to affect underserved populations that may be living all over the world? As a result of this knowledge explosion, what is happening is there is a shortage of highly specialized expertise all over the world, not just rural areas; even urban underserved areas experience this shortage."

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Freelancers Union Expands Affordable and Stable Coverage for Independent Workers

Feb 24, 2012, 11:32 AM, Posted by Nancy Barrand

Some good news came our way this week -- a story unfolding the way we hoped it would.

Freelancers Union, a Pioneer Portfolio grantee, will launch three Consumer Operated and Oriented Plans (CO-OPs)--nonprofit, consumer-governed insurance companies envisioned by the Affordable Care Act to expand health insurance choices for consumers and small businesses. This is made possible by $340 million in low-interest and no-interest federal loans announced Feb. 21 by the Centers for Medicare & Medicaid Services to start three of the first seven CO-OPs in New York, New Jersey and Oregon.

We’re delighted because Freelancers Union used a 2010 grant from Pioneer to shape its existing ground-breaking model for demand-side, consumer-driven health care into a proposal for the new world of CO-OPs.

It was a natural fit. Here’s the back story.

The existence of Freelancers Union is recognition that for the 30 percent of the workforce that earns its living as freelancers, contractors and temps – so-called independent or contingent workers – there are no employer-provided benefits, including health insurance. Many of these workers earn too much to qualify for public assistance and not enough to afford the health insurance available in the individual market, typically more costly than the group market plans offered by employers.

As a Foundation, we have been concerned for 30 years about Americans’ lack of access to affordable and stable health coverage, so a partnership took shape over the course of three grants.

We first partnered with Freelancers Union in 2007, when they were looking to start a health plan for the contingent work force, but with an important twist. They wanted the benefits to reflect input from the workers. Our first grant helped the organization conduct surveys and focus groups to shape the benefit design. It learned that its members wanted a product aligned to their holistic needs on top of catastrophic coverage.

With a second grant in 2008, we joined a consortium of funders that helped launch a for-profit subsidiary, Freelancers Insurance Co., with a line of products that combine catastrophic insurance coverage with special attention paid to mental health services as well as wellness, prevention and alternative therapies.

Then with a third grant in 2010 we sought to enable Freelancers Union to expand its group purchasing health-benefits program from New York into New Jersey and Georgia. We envisioned this work might produce a prototype for the CO-OPs, and it did. All CO-OPs won’t follow the Freelancers Union model, of course, but it certainly sets a standard.

The work of Freelancers Union reflects many of the core ideas that drive Pioneer Portfolio grant-making. It is transformative and disruptive. As large insurers back away from the individual market because of the tight profit margins, some fresh thinking is badly needed, like rolling individuals into groups even though they do not work together, and then listening to them carefully to design products that meet their needs.

That’s pioneering, and we’re proud to have played a part.

Follow @FreelancersU on Twitter.

This commentary originally appeared on the RWJF Pioneering Ideas blog.

David Eddy, Opening Doors to the Future

Dec 9, 2009, 2:30 AM, Posted by Nancy Barrand

I have heard David Eddy present a half-dozen times, and each time come away with a richer appreciation of the door to the future he is opening for us. He was at the Foundation talking to staff today, and presentation stood out as being special because he started with an historical perspective of how we have defined quality of medical care over time, moving from qualitative judgment to quantitative measurement as the data and tools for modeling have improved.

And while he is somewhat modest, it is clear that David has figured prominently in that history, challenging the system to evolve as new data and methods have been developed. He gave us the concept of evidence-based medicine when we had none. He helped to create the HEDIS measures and gave us evidence-based guidelines of care for population-based health measures. Now he is giving us personalized guidelines which will be aggregated to develop new Global Outcome (GO) Scores for accountable care organizations to manage the health of their members.

It cements in my mind the importance of creating ARCHeS to give many more policymakers access to the power of the Archimedes model that David and his colleagues have developed.  I feel like I have had a glimpse of the future, and we really could have the best health care system in the world.

This commentary originally appeared on the RWJF Pioneering Ideas blog.

Dr. David Eddy's Vision for the Future of Medicine

Nov 24, 2009, 3:42 AM, Posted by Nancy Barrand

“Whether Eddy will get a Nobel Prize, I’m not sure. But he’s certainly changing how we think about health care.” – Dr. Lynn Etheredge, Director of Health Insurance Reform Project at George Washington University and Pioneer grantee, on Dr. David Eddy

We encourage you to read “Modeling Human Drug Trials – Without the Human,” a profile of Pioneer grantee Dr. David Eddy and Archimedes, his mathematical model of human physiology, diseases, interventions and health care systems. Featured in the December issue of Wired and authored by Jennifer Kahn, the article explains that Archimedes is part of Eddy’s “vision for the future of medicine: faster, cheaper, broader, clinical trials — all happening inside a machine.” While clinical trials are still required to test the safety and effectiveness of new medications, Archimedes — which Eddy has spent more than a decade developing — recreates aspects of diseases not readily measurable by researchers and turns out results at a much faster rate, and for far less money.

Pioneer is currently supporting Dr. Eddy to develop and launch ARCHeS, a powerful Web-based interface that gets a brief mention in the article. As Kahn writes, ARCHeS “will allow doctors, policymakers and researchers to access Archimedes and design their own trials.” By doing so, Pioneer aims to ensure that health officials can attain a better understanding of the implications of their decisions before making recommendations for patient care, not only advancing disease treatments but also curbing unnecessary health care costs for patients. ARCHeS will not be a database of answers, but an evidence-based tool that can be used to find answers.

Dr. Eddy will be visiting with us at the Robert Wood Johnson Foundation in early December to share a beta version of ARCHeS and we’ll, in turn, share highlights from his presentation via the Pioneer Twitter account. We hope you’ll follow.

In the meantime, tell us what you think of the article. We’ll be monitoring blogs and tweets that write about the piece and sharing them here later in the week.

This commentary originally appeared on the RWJF Pioneering Ideas blog.

TEDMED, 23andMe and Kaiser Permanente's RPGEH

Nov 3, 2009, 8:22 AM, Posted by Nancy Barrand

Excitement about the power of genomics was palpable at TEDMED this year as some attendees lined up to spit in DNA vials and send it off to 23andME. Unfortunately, many may be disappointed to find out how little our genomes can tell us without research that a large population-based research program, such as we are helping to build at Kaiser Permanente, can provide. Ann Wojcicki, CEO and founder of 23andMe, stated from TEDMED stage that Kaiser Permanente plans to genotype the DNA of 100K members but does not plan to provide that information to the individuals who donated their DNA, implying that valuable information was being withheld.

We asked Cathy Schaefer, executive director of the Kaiser Permanente Research Program on Genes, Environment and Health (RPGEH), to respond.

The RPGEH is designed to conduct research on populations to improve health and medical care. The information collected, including the genotyping of 100,000 individuals for our NIH-funded grant, will enable researchers to conduct population-based research that may help them understand the genetic and environmental basis of disease, treatment response, and health.

We inform all participants about the purpose of collecting genetic and other information, and they volunteer to participate — at no cost to them — to facilitate this research, knowing their individual results will not be returned to them and that all data about them will be "de-identified." We also inform participants that if we discover something in their data or samples that may be important to their health, we will contact them to learn if they want to have the information. 

Why doesn't the RPGEH restructure so that it can return results to individuals? Because genetic information obtained through today's genome-wide studies has not been designed to be useful to individuals; it is designed for use in research. In most cases, it isn’t known whether the variants tested for are actually implicated in a disease process, or are markers for variants that play a role in disease, and results from these tests are rarely actionable.

Ann Wojcicki from 23andMe misspoke at last week’s TEDMED gathering when she said that Kaiser Permanente does not return genetic results. Kaiser Permanente Health Plan members have access to genetic testing as part of their Health Plan membership and through their physicians. Kaiser Permanente physicians order genetic testing and return genetic results to thousands of patients, for numerous conditions, when information that testing will provide could help to inform the patient’s health care, disease prevention, or future childbearing. For example, members with some cancers or HIV may have genetic testing to determine the most effective treatment. Couples considering pregnancy may also be tested to determine family histories for certain diseases that may be passed on to their children.  

Individuals who have questions about their genetic risks for various health conditions should talk to their physicians, who can provide useful information about risks and options for testing.

This commentary originally appeared on the RWJF Pioneering Ideas blog.