Flashback to the Future

One year ago this week I was in Sweden to deliver a talk at Almedalen, a festival of ideas held on the island of Gotland.

This year, my community colleague John Nosta brought the latest in American ingenuity to the same event, telling the crowd that digital health is not a far-off promise, but instead simply requires the implementation of technology that exists today. I’ll update this post when The video of his talk is up and you can check out his tweets.

Two essays I wrote about my own trip:

The comments alone are worth a click — fascinating conversations about interoperability of health IT systems, collectivism, equity, and value networks. The conversation is never over, so please post new questions and comments if you see something that inspires you!

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

Public Q&A: Online patient communities

A community colleague recently asked me where he might find the latest numbers on the percentage of U.S. adults who participate in online patient communities.

In the spirit of “public Q&A” I’d like to share my answer and ask people to add tips about other resources in the comments.

Up until July 2014, I led the Pew Research Center’s health and technology portfolio. I believe that data is still relevant, so that’s where I’ll focus.

Public opinion polling about a rapidly evolving field is a challenge, to say the least. We constantly talked at Pew Research about how to capture a behavior early, before it morphed into something else, and without naming a certain platform (see: The Twitter Question and Changes to the way we identify internet users.) 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

Speak up: The network is our superpower

I have a new post up on Medium, illustrated with this gem from a 2012 post:

Fred Trotter: Citation Needed

Thanks to Fred Trotter for adapting this xkcd cartoon

An excerpt:

We can’t let misinformation—or worse—go by without comment.

I think it’s time for more people to speak up in health care.

More pediatricians should express their measles outrage.

More people should chronicle the reality of living with chronic conditions.

Continue reading

What health care can learn from Mike Mulligan and his steam shovel

Google is upgrading health search…again.

In 2010, I was inspired by Animal Farm to write that Google saw some health sites as more equal than others. This time I turned to Mike Mulligan and his Steam Shovel, by Virginia Lee Burton.

Cover of children's book: Mike Mulligan and his Steam Shovel, by Virginia Lee Burton

Continue reading

Data for health

Last week I was part of the first community meeting for Data for Health, a program sponsored by the Robert Wood Johnson Foundation. It was held in Philadelphia on October 30 (an absolutely beautiful fall day).

You can catch up on the #data4health tweets thanks to Symplur — and there were some good ones:

Continue reading

Break my heart, make me change

Take a deep breath and then look at this data about HIV in the U.S.:

HIV disproportionately affects blacks in the U.S., by Jeff Guo of the Washington Post

I have seen these numbers before, but never laid out so clearly and so beautifully. Thank you, Jeff Guo of the Washington Post, for breaking my heart. Thank you, because I think we all need our hearts broken anew from time to time. We need to face the reality of the epidemic. We need to look in the mirror, wipe away the tears, and see ourselves clearly in order to start making plans for change. We need to visualize health in order to communicate and pursue it.

And yet:

“We’ve known for over 50 years that providing information alone to people does not change their behavior.” – Vic Strecher, quoted in a fabulous article by Jesse Singal titled, “Awareness is Overrated.”

So what will? What can make people change their behavior?

I think advice and information delivered by a “just-in-time someone-like-me” holds promise. And we have the ability to connect in our hands.

We are all asking secret questions online — even more so when we use our phones. People who search the AIDS.gov site on their phones, for example, use much more specific terms than those who search from a desktop or laptop.* Mobile seems to make things personal, immediate, and specific.

What if all the knowledge and insights being found privately could be shared more widely? Not everyone is ready to have words like “vagina” and “anal” pop up on their Facebook page, but what if there was a way to bring frank, truthful talk about sex to people’s phones, one-to-one, one-to-many, or many-to-many? What if we could unleash the power of science, storytelling, and sharing? What if we could make health information relevant, in the moment, when we need it, like a heartbeat, a deep breath, or a caress is relevant?

Who knows better than someone like me how to break my heart, make me laugh, and get me to change?

Other sources of inspiration, which I need today after seeing that data:

What breaks your heart? What inspires you?

* Source: Cathy Thomas of AIDS.gov, at a meeting of the Federal HIV/AIDS Council in 2012.

Who is ready to stand naked in front of the mirror of data?

In this talk at the Quantified Self Public Health symposium, I argue that we must respect the context of people’s lives while designing health interventions, tools, and research projects. Not everyone is ready to stand naked in front of the bright light of numbers on a screen. Let’s be gentle in our approach, especially to those living with chronic conditions or caring for loved ones.