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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.

better-data-better-health-feature-circles

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 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 - Banner

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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So Much Data! How to Share the Wealth for Healthier Communities

Jan 14, 2015, 5:15 PM, Posted by Alonzo L. Plough

What Counts: Harnessing Data for America's Communities

The world of research and evaluation is experiencing a dramatic increase in the quantity and type of available data for analysis. Estimates are that an astonishing 90 percent of the world’s data has been generated in just the past two years. This flood of facts, figures, and measurements brings with it an urgent need for innovative ways to collect and harness the data to provide relevant information to inform policy and advance social change. “Not long ago, we had a problem of insufficient data,” says Kathryn Pettit, a senior research associate at the Urban Institute. “Today we have more data than ever before, but we still need to build capacity to use it in meaningful ways.”

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RWJF Executive Nurse Fellow Brings Nursing Perspective to Bioethics

Jan 14, 2015, 9:00 AM

Cynda Rushton, PhD, RN, FAAN, is the Anne and George L. Bunting Professor of Clinical Ethics and a professor of nursing and pediatrics at Johns Hopkins University. She is an alumna of the Robert Wood Johnson Foundation (RWJF) Executive Nurse Fellows program (2006-2009). In 2014, she was named a Hastings Center Fellow for her work in bioethics.

Cynda Rushton

Human Capital Blog: Congratulations on being named a 2014 Hastings Center Fellow. What does this fellowship mean for you and your career?

Cynda Rushton: It’s a wonderful honor to be included in this interprofessional group of scholars of bioethics. It’s a terrific opportunity to cross-pollinate with great thinkers and leaders and to think about some of the most vexing ethical issues in health care. It’s going to be a rich container for dialogue, learning, and leadership.

HCB: How will the fellowship work?

Rushton: Fellows have the opportunity to help guide the direction of the Hastings Center, which is an independent, non-partisan and nonprofit bioethics research institute in New York. The center’s mission is to address fundamental ethical issues in the areas of health, medicine, and the environment, and we’ll be bringing up issues that we think deserve more in-depth scholarship and research. This summer, we’re having a retreat where we will be able to work together around issues of common concern, particularly in the area of bioethics.

HCB: What will you focus on as a fellow?

Rushton: My focus has been on how to create a culture of ethical practice in health care. I’m interested in what is required to create that culture and what kind of individual competencies need to be in place to support people to practice ethically and reduce moral distress.

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The Patient—and Her Data—Will See You Now

Jan 7, 2015, 1:48 PM, Posted by Susan Dentzer

Smartphone Photo by Viktor Hanacek, Picjumbo.com

It’s 2015, the year that Marty McFly, the fictional character in the 1989 hit movie "Back to the Future II," visits by time traveling into the future in a souped-up DeLorean automobile. Predictably, most of the technologies the film foreshadowed haven’t been invented as of the real 2015—not the “hover board” that Marty glides along on, nor the self-lacing sneakers, nor (of course) the time travel.

But plenty else has been invented or discovered in the last 30 years, revolutionizing much of our lives, including our health and health care. If you want to feel as exhilarated, and maybe even as disoriented, as Marty did after fast-forwarding to 2015, read Dr. Eric Topol’s new book, The Patient Will See You Now: The Future of Medicine Is In Your Hands.

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Home is My Facebook Page: mHealth’s Potential to Help the Vulnerable

Dec 16, 2014, 12:09 PM, Posted by Susan Dentzer

La Clinica del Pueblo LaClinica del Pueblo, a federally qualified health center in Washington, DC, serves many Latino patients — and relies increasingly on social media to communicate with vulnerable patients about sensitive topics, such as using condoms to help prevent HIV and sexually transmitted diseases.

Say the words “smartphone user” and “app,” and what comes most readily to mind is probably some hipster pulling out his iPhone to book a ride from Uber. But at last week’s mHealth Summit in Washington, D.C., those words were also linked to far different images—of highly vulnerable people seeking and obtaining health care.

Consider:

  • At La Clinica del Pueblo, a federally qualified health center (and previous RWJF grantee) based in Washington, D.C., smartphones and Facebook are key communications channels for reaching hundreds of young gay Latino men and transgender women at risk for HIV. The clinic’s executive director, Alicia Wilson, said on one panel at the mHealth conference that La Clinica’s Facebook page now has about 1,000 followers. “It allows us to spread prevention messages and bring people into care who have been marginalized,” alerting them to free counseling, testing and referral services available through the clinic, Wilson said.
  • A company called Healthvana has a Yelp-like feature that allows people to search for places to get tested for HIV or sexually transmitted diseases. They can also register and set up secure accounts to receive the results from partner testing centers quickly and discretely, along with advice about “actionable next steps” to take should the tests be positive, says CEO and founder Ramin Bastana.
  • Based in Britain, but with a growing presence in the United States, a website and social network called Big White Wall offers a “professionally curated community” for people with psychological issues or mental illness—a virtual space where they can stay anonymous and confide in others; take courses on managing depression and other illnesses; and even have secure consultations with therapists via Skype. Endorsed by England’s National Health Service, and now offered in a “soft launch” phase to enrollees of Kaiser Permanente Northwest, the site demonstrates that “the depth of the need for alternative person-centered health care across the globe is really profound,” says founder Jen Hyatt.

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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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