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.

How did we get here? And where are we going?

Video of my talk in Sweden is now online (skip to minute 7 unless you speak Swedish):

It’s a comprehensive summary of my research so far, as well as an argument for listening to patients and caregivers as we move forward into the future.

The Vasa, which sank on its maiden voyage in 1628I opened with an example that was inspired by a visit to the Vasa museum in Stockholm and the seafaring history of the island of Gotland, where the meeting was held:

For hundreds of years, sailors on long sea voyages suffered from bleeding gums and wounds that would not heal.  The disease is called scurvy in English – skörbjugg in Swedish. In 1601, a sea captain in England conducted an experiment using 4 ships. One ship’s sailors were had lemon juice added to their diets, 3 other ships did not. The sailors who got the lemon juice were much less likely to get scurvy. This was confirmed in further experiments throughout the 17th and 18th centuries, but it was not until 1795 that the British Navy started using citrus juice on all their ships and wiped out scurvy among their sailors.

200 years between discovery and widespread adoption! Why? One reason is that the people affected by the disease had no access to information about the cure and, even if they did, they had little control over what food was sent on the ships where they worked. It was an economic and strategic decision, finally, by leaders, to add citrus fruit to sailors’ diets and improve or save their lives.

Keep this in mind as I describe more recent history. Who has access to the information? Who is experimenting with cures and innovations that might change the world?

I’d love to hear what people think of the ideas and examples I lay out in the talk — the Cystic Fibrosis Foundation, PatientsLikeMe, the C3N Project, and others. Please share your thoughts in the comments!

McKinsey’s “Healthcare digital future” checks out

Stefan Biesdorf and Florian Niedermann of McKinsey wrote an excellent essay laying out 5 myths about health care and technology. It rings true so I decided to add my own evidence to their points:

McKinsey Myth 1: People don’t want to use digital services for healthcare

Pew Research has found that looking for health information is consistently among the most popular online activities in the U.S., a trend dating back to 2000, so there’s no question that this is a potentially huge market. Biesdorf and Niedermann make the point that there is a gap between consumer interest and uptake of digital health services because current offerings are poor quality or don’t serve people’s needs. 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

Persistence vs. flow

The Pew Research Center has released its latest report celebrating the 25th anniversary of the Web. This one looks forward to 2025, with experts’ predictions. Here’s my favorite quote so far, from the “Pithy Additions” section:

Jerry Michalski, founder of REX, the Relationship Economy eXpedition, observed, “The Internet gives us Persistence — the ability to leave things for one another in cyberspace, freely. This is a big deal we haven’t yet comprehended. Right now, we are obsessed with flow, with the immediate, with the evanescent. Persistence lets us collaborate for the long term, which is what we’ll slowly learn to do … We will begin to design institutions from a basis of trust of the average person, instead of mistrust, the way we’ve been designing for a few centuries. This will let us build very different institutions for learning, culture, creativity, and more.”

I think this has implications for health communications, such as when we post information online that we hope will persist and be used as the basis for future decisions. The “flip the clinic” movement is part of this — the acknowledgement that a doctor’s appointment is just one opportunity to reach someone with health advice. Continue reading

3 big trends: networks, unbundling, smartphones

Fred Wilson, a venture capitalist, gave a talk at Le Web that touches on health, but even better, provides a framework for thinking about how technology is transforming the world in general:

Pew Research has data to back up each of his points on mobile, video, dating, social networking, news gathering, education, our networked lives in general, etc.

If you want to hear specifically about what he sees coming in the health space, skip to minute 20, when he says, ”Health and wellness is what keeps you out of the health care system.”

If you want another shortcut, DataFox published a very good summary of the talk. You might also enjoy the lively discussion on AVC, Fred’s own blog.

Here’s my comment:

Fred is spot on when he talks about the huge potential for tracking our own health — 7 in 10 U.S. adults do so now (source: Pew Research Center). The hitch is that half do so “in their heads,” one-third with paper and pencil, one-fifth using any kind of tech. Most people are not yet convinced that an app or device will help them.

I also agree that networks are going to revolutionize health (if not health care, eventually) but I’m personally more interested in peer-to-peer networks among patients and caregivers (esp. parents of kids with rare diseases) than those developing networks for clinicians. In this, I’m following the swarm — the many, many people who are connecting online to get answers, or even better, to improve their questions. HumanDx should consider adding expert patients to their roster of “experts.”

How would you like your data today?

After a very full year of writing reports, giving speeches, and number-checking infographics, I’m left wondering: What’s the most effective way to deliver insights? How can I better serve you?

To paraphrase Dr. Seuss: Do you like the data in a table? In a tweet? In a speech? Do you like the numbers in a box? Do you like them with a fox? (Couldn’t resist.) Would you like them here or there? Would you like them anywhere?

Do you like them here or there? A page from Green Eggs and Ham by Dr Seuss

How do you hear about new research? Do you tune in right away, when it’s first published, or later? What format do you find useful — tweets, slides, videos, infographics, fact sheets, reports? How about these blog posts I write and the conversations that ensue? What do you find valuable? Continue reading

A field guide to The Diagnosis Difference

The Pew Research Center released a report today on people living with chronic conditions: The Diagnosis Difference.

Policy makers, patient advocates, entrepreneurs, investors, clinicians — all health care stakeholders — can use the data to map the current landscape. There are still barren patches, where people remain offline and cut off from the resources and tools. But there are lush valleys, too, where engagement and change is happening.

I see e-patients as the guides to those valleys since unless you are living with chronic conditions — or love someone who is — you don’t see that side of the internet. So here’s my request: provide your evidence. Show what you have learned. Continue reading