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

What I’m reading, listening to, admiring…

Susannah at the library

I hunkered down at the library this week, working on a couple of long-term projects.

I kept one eye on Twitter, though, as I always do, and wanted to share what distracted — and inspired — me this week:

Radiolab: Worth — what would you pay for another month of life? How about a year? They get into the debate about Solvadi, which I find fascinating, and wind up talking to patients, “the people who aren’t at medical conferences.” Thanks to Mike Evans, MD, for tweeting the link.

Pew Internet: Social Media Site Usage 2014 — 81% of U.S. adults use the internet and, of those, 71% use Facebook, which is really pretty astounding (and is an opportunity for health intervention and support). Continue reading

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

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

How do we know that social media is important to health care?

Update: the videos are up — thanks, @EinsteinMed!

On Friday, I spoke at the Albert Einstein College of Medicine, along with Kevin Pho, MD. During a planning call, the symposium organizers had shared results from a faculty survey: Fully two-thirds do not use social tools on a regular basis. Asking them, therefore, to spend a half-day learning about social media was a pretty bold request.

Inspired by Kathy Sierra to focus on the users’ (that is, the audience’s) needs, I began with a question that many busy clinicians might be asking:

How do we know that social media is important to health care?

Why should they take anyone’s word for it? Where is the evidence? Continue reading

Data collection and connection

Health 2.0 featured a panel devoted to the “new environment for better health care decisions.” I shared some new findings and I’d love to hear what you think:

[Update: the video of my talk is now online.]

Where I work, at the Pew Research Center, we use data to hold up a mirror to society so you can see yourselves clearly. We don’t tell you what to do about your reflection. We just want you to see yourself as you really are.

A crowd of people reflected in a mirror

We also provide a window into other people’s lives, which may be very different from your own. We survey in 60 countries and on a wide range of topics so people can make informed decisions, based on data. We are huge fans of reality-based decision-making and I hope you are too.

In our health research, we visit other kinds of nations. Continue reading

Chicken soup for decision-makers

Ceramic casserole with a shino glaze by Marcia Halperin

Half of all health searches in the U.S. are done on behalf of someone else. That’s been a core finding of the Pew Research Center’s health portfolio since 2000. We have called information the new chicken soup of the digital age, brought to the bedside by people who want to help.

Now, in the social age, health research can be even more distributed. People who are two or three degrees of separation from a patient can get involved. And we all have a much greater chance of finding the “just in time someone like me” who can be a guide in the health care maze.

Sometimes there is no time to read a book or even do a comprehensive search online. A decision needs to be made. I study it but I also live it. Continue reading