If you crave inspiration, tune in to the Robert Wood Johnson’s Pioneering Ideas podcast by subscribing to the iTunes feed or listening on Soundcloud:
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.
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:
Take a deep breath and then look at this data about HIV in the U.S.:
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.
“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:
- Love Heals
- Harm Reduction’s videos
- Metro TeenAIDS
- Kicesie’s Sex Ed videos
- Remarks by Gina Brown of the Office of AIDS Research at NIH, including the immortal question: “When a woman stands up, which way does her vagina point?”
* Source: Cathy Thomas of AIDS.gov, at a meeting of the Federal HIV/AIDS Council in 2012.
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.
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.
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.
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!
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
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.