The Power of Connection

Portraits of past HHS secretaries above Post-its

Portraits of past HHS secretaries overlooking an IDEA Lab design session

Technology enables the mission of U.S. Department of Health & Human Services (HHS). It widens access to information and tools and pushes power out to all parts of the network, from our colleagues in the federal workforce to our fellow citizens. At HHS, we seek to create a learning system that recognizes the potential of every stakeholder in the network to contribute, from patients and caregivers to clinicians, researchers and policymakers.

The CTO of HHS serves the Secretary and the agency by bringing new approaches to the problems faced by those on the front lines of medicine, public health, and social services.

I see the role as a spotlight and a beacon, highlighting the innovative work being done inside and outside the federal government and inspiring people to reach higher, in service to citizens. Continue reading

The Value of Data

Health care is in danger of missing the point.

Patient Records by ken fager on flickr

(A repost from 2014 that’s relevant today thanks to announcements at HIMSS.)

In 1999, when I was the editor of USNews.com, the dot-com boom was in full swing. Money seemed to be gushing out of the Bay Area and some sharpies at U.S.News saw an opportunity to cash in. They proposed slicing out the most marketable piece of the website — the education franchise — and selling it off for a minority stake in a college applications start-up. Continue reading

The internet spins both ways

Did you know some doctors once had a hand signal to warn their colleagues about internet-using patients?

I talk about this and other health care history, plus a bit about the possible future (including some market opportunities), in an interview with Alex Howard:

One study I cite in this segment of our conversation centers on the analysis of messages posted to an online breast cancer community. Researchers found that 10 of 4,600 postings were false. But forum participants corrected seven of the misleading posts, often within a few hours. Only 3 posts containing misinformation went unchecked by the community.

Sure, that’s 3 too many, but the analysis also shows that this was a high-level medical discussion among women whose lives were at stake. Group members talk about prescription-drug shelf life, disease-staging parameters, and the likelihood of recurrence within five years – serious topics, taken seriously. The excerpts show that patients, when given access to sound medical information, cite it and put it to use.

I use this example to make the point that the internet can help spin conversations toward misinformation or toward enlightenment. The question is: which will we choose? Which will we nurture?

See two more videos and read Alex’s article about the recent Health Datapalooza: Peer-to-peer healthcare, e-patients, and self-tracking drive health’s social revolution.

As always, I’d welcome your own memories of our recent past and predictions for the future.

Health Datapalooza turns 5 (going on 15)

In my opening remarks for Health Datapalooza‘s final day, I tried to strike notes of “welcome!” and “let’s get real.” The adolescent meme got picked up, but without much context, so I thought I’d share what I said:

Susannah Fox on screen at the Datapalooza - Photo by @CarlyRM

Photo by @CarlyRM

The Datapalooza is five years old, but we are way past the kindergarten stage, when people outside the movement could pat health data on the head and walk away. There are people in this room who have made front-page news with health data and, even more importantly, changed people’s lives. It can no longer be ignored.

But let’s be honest. Health data is still finding its stride. As an observer of technology adoption and evolution, I place health data at the adolescent stage: great potential, not yet fulfilled. Continue reading

Recognizing the value of data

In 1999, when I was the editor of USNews.com, the dot-com boom was in full swing. Money seemed to be gushing out of the Bay Area and some sharpies at USNews saw an opportunity to cash in. They proposed slicing out the most marketable piece of the website — the education franchise — and selling it off for a minority stake in a college applications start-up.

I was aghast. There were good editorial reasons to not sell out to this particular company. But what shocked me was that the publisher did not recognize the value of the school rankings data, laboriously collected and coded each year. That was the gold mine we were just beginning to explore. Continue reading

Health data’s adolescence

I wrote a guest post for the Health Data Consortium — here’s the start of it:

This year marks the 25th anniversary of Sir Tim Berners-Lee’s proposal to create what we now call the Web, the visual, hypertext organizing system which overlays the internet. The pace of internet adoption gathered speed once people could more intuitively point, click, and follow a train of thought without having to type in a chain of commands. I see a clear parallel in the adoption of tools related to health data, most of which are still inelegant, but show growing promise as they become more visual, collaborative, and intuitive. Continue reading

Health Datapalooza IV

I will be part of a panel on self-tracking at the Health Datapalooza in Washington, DC, on Tuesday. My fellow panelists include Naveen Selvadurai, a co-founder of Foursquare; Roger Magoulas, the director of market research at O’Reilly Media; Jodi Daniel, director of the Office of Policy and Planning at the Office of the National Coordinator for Health Information Technology; and Abdul Shaikh of National Cancer Institute’s Health Communication and Informatics Research Branch.

Naveen wrote an intriguing essay on the topic:

a personal API

Jodi shared this page, part of the ONC’s vision for putting consumers at the center of health care:

Consumer eHealth

Here’s a retrospective of essays I’ve written about tracking and the Datapalooza:

Watch for tweets with the tag #HDPalooza if you can’t be part of the event in person.

Unpacking self-tracking

One of the “top tweets” of this week’s Health Datapalooza was one I dashed off on my way to the event:

It was great to see how this research tidbit was treated like news — and if it’s new to you, then yes, I think it is “news.” Unfortunately, some people didn’t click through to read the report section and misinterpreted the findings. Others did click through and felt burned that it was based on a 2010 survey. I have to share the best of those tweets:

Touché!

When my Pew Internet colleagues and I formulated the questionnaire for the 2010 health survey, we included two exploratory questions about self-tracking. They are not perfect, but I think they were a fine first measure. For everyone’s dissection, please see items E and F: Continue reading

How can a community organization tap into the health dev craze?

Updated on 3/24/2011: I recently met the director of a community health organization A. Toni Young, founder and executive director of the Community Education Group here in Washington, DC. She has big dreams for harnessing the power of her clients’ health data but few resources to make the dreams come true.

I told her a bit about the Community Health Data Initiative, the Health 2.0 Developer Code-a-thons, and other examples of geeks helping out wonks. I realized that, while I track the field and get to attend all these cool events (and even serve as a judge for one health app challenge this spring), I don’t necessarily know many people on the ground.

What advice would you give to her? What resources would you recommend? Most immediately, are there any meet-ups or code-a-thons happening in the DC area this spring where she could connect with health hackers? Continue reading

Making Health Data Sing (Even If It’s A Familiar Song)

Todd Park is determined to make health data hot. He is leading the U.S. Department of Health & Human Service’s effort to make more of their data sets publicly available, from nursing home quality ratings to the food environmental atlas (view the full list of available downloads). As he says, HHS doesn’t want to choreograph the outcome of all this data liberation – they just want to make health data as useful and available as weather data.

I admit to being a little skeptical. Scratch the surface of the available data sets and you’ll find the same health disparities discussed everywhere in public health: how much money you have is a big determinant for where you live and where you live is a big determinant of your health.

However, maybe there’s something to that weather analogy. As someone said,Everybody talks about the weather, but nobody does anything about it.” The innovators being showcased today at the Community Health Data Initiative event are examples of people who want to talk about health disparities AND do something about it.

Pew Internet research finds that at least some Americans have an appetite for government data. Do they have an appetite for doing something about it? Continue reading