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How Data Will Help Me Keep My Resolution

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

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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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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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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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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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