Prepare

Pew Research: U.S. Population by Age, 1950-206What if this was played on a loop in Times Square? What if every health conference displayed it on a screen at the front of the hall, to accompany every speaker? How might we prepare for what is coming?

I’m looking forward to next week’s Health 2.0 conference in Santa Clara, CA, where issues like caregiving and our aging population will be discussed, including on the “Unmentionables of Health” panel (Tuesday afternoon).

Thoughts, comments, inspiration, tips welcome in the comments!

Share the glow

Conference tweets are a little like brunch pics on social media.

Stanford Medicine X: Sunday morning panel

Sometimes I want to reach out and say, “Shhh, it’s OK. I’m so happy that you’re happy with your eggs, but you don’t need to show them to me.”

Then again, sometimes you see a pic that makes your mouth water and you think, “Next time, that’s going to be me eating that yummy food.” Or you go into your kitchen and cook up something delicious right here, right now, inspired by your friend’s experience.

Maybe that’s why we can be so manic on social media. We want other people to feel what we’re feeling. We want to share the glow.

That’s what I hope to do when I share my experience at Stanford Medicine X, where the glow is so very bright. I want your mouth to water. I want you to get some of that good stuff for yourself, either by finding your way there next year or finding something similar locally.

I put together a Storify to capture the spirit of the panel I was on along with Pamela Ressler, Meredith Gould, and Colleen Young (pictured above). The experience of preparing for that panel — and sharing the conversation so openly with the world on the livestream — was transformational. I think we are really on to something. I’m not going to let the fact that the conference ended stop me from continuing to push forward on what we learned together.

Pam Colleen Susannah Meredith photo by Gilles

Post-panel photo by Gilles Frydman

If you want to see more of our brunch pics from Medicine X, check out:

I’ll add links to other sources of the Medicine X Glow if I spot them. Please post in the comments if you’ve got ideas about our panel topic: how to create, build, nurture, and spread community in health. And, related: how to share the magic of being at a conference (or brunch).

Oh, and compliments to the chef, Larry Chu, and his crazy-talented crew who cook up Medicine X for us. Delicious, year after year.

Public Q&A: career advice

I made a big career change recently and received quite a few emails asking how & why I did it. I also get a regular flow of inquiries from people new to the health/tech field who ask how I navigated my path up to this point.

First of all, pretty much everyone tells a good story in retrospect, including me. So take other people’s career advice for what it is: highly subjective interpretations of personal history.

But, in case it’s useful, here’s the advice I share with people who ask: Continue reading

“One person’s TMI is another person’s need-to-know.”

- Meredith Gould, aptly summarizing a key discussion point for our upcoming panel, “Communicating the experience of illness in the digital age.” (TMI stands for “too much information.”)

too much information by mkorsakov on Flickr

(What I imagine the experience of illness feels like to people cut off from communities of fellow patients and caregivers. Photo credit: mkorsakov on Flickr.)

We are flipping the panel, posting ideas and sparking conversations in advance so that when we arrive at Stanford Medicine X, the on-stage event will be one more link in the chain, not the starting point.

Catch up:

What else can we do to engage more people in the discussion? Please share ideas in the comments.

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.

Background:

Medicine fails, patient is frustrated: Google

Jessica Hagy is one of my favorite social commentators, so I was thrilled to meet her in person at the 2010 Mayo Transform conference, curated by David Rosenman. Here is one of her cartoons from that event:

Medicine fails, patient is frustrated: Google - by Jessica Hagy

I have shared the image on Twitter a few times, including today, when I wrote that I’d add “community” to “Google” as an option for patients. Jordan Safirstein, MD, (aka @CardiacConsult) replied, “I would write ’2nd Opinion’ – with more available telecom – pts will be able to get informed 2nd opinions easier.”

What do you think? I know it’s just a cartoon, but it captures something, and I’d love to discuss it if it inspires (or incites) you. Is technology, particularly social media, causing medical complaints to go up (as one article suggests)? Or is it a means of expression for broader cultural change?

I’m leaving Pew Research

Believe it or not, 14 years ago, the idea of using the internet for health was a novel concept. That’s when Pew Internet published its first report about the social impact of the internet on health and health care, raising eyebrows across the U.S. Our data was cited in mainstream news outlets, in JAMA, and, most important to me, drew the attention of Tom Ferguson, MD, an online health pioneer who became my guide to the world of e-patients.

I will always be grateful for the incredible latitude I was given to explore and experiment at Pew Internet, thanks to Lee Rainie and our sponsors, the Pew Charitable Trusts and the California HealthCare Foundation. We fielded six national surveys devoted to health and five major fieldwork projects in online patient communities. We were explorers in uncharted territory – areas that would become the most important real estate in the industry – and we were breaking glass on a daily basis, always trying new things. It has been my honor to translate that research into storytelling that benefits decision-makers of all kinds.

For me the new truth is that the most exciting development of the connected health era is not access to information, but access to each other.  The implications are enormous for us all: consumers, clinicians, policy makers, and business leaders. The power of community in health can revolutionize the way care is experienced and delivered. It is our job as an industry to bring that to life, to legitimize and formalize the very real and quantifiable role that community plays in our health. I am called to pursue that mission. So I’m writing a book to drive the idea forward (more on that in another post) and leaving the Pew Research Center to commit to this idea full-time.

In September I’ll also start as an Entrepreneur in Residence (EIR) at the Robert Wood Johnson Foundation, the largest philanthropy in the U.S. devoted to the public’s health. Led by Risa Lavizzo-Mourey, RWJF’s focus on building a culture of health overlaps with my vision; RWJF is uniquely positioned to execute on this audacious goal.

By taking on the EIR role, I’m following in the footsteps of Thomas Goetz, who inaugurated the position and wowed us all with initiatives like Flip the Clinic and Visualizing Health. I can’t wait to get started, taking this definition of entrepreneurship to heart: “the pursuit of opportunity without regard to resources currently controlled.”

The power of community must be unleashed on health if we are to achieve the vision we all hold so dear – a world where empowered individuals and families make informed choices that result in living as well as they can for as long as they can. The wisdom people have about themselves and their loved ones is as vital to their health as the insight they gain from clinicians. Simply put, my goal is to help people understand how powerful they are.