One survey question I cited dates back to 2002, but I think it is still interesting. Here’s the text of the question:

Earlier, you have said that you have not used the internet to search for health or medical information. Thinking about the reasons you do not go online for such information, is it because…

much of the information on the internet cannot be trusted?

there are not any health or medical issues that concern you right now?

you are satisfied with the health and medical information you get elsewhere?

you would not know where to start looking for such information online?

The results can be found in the 2003 report, Internet Health Resources, under the heading: Why some internet users have not searched for health information.

How would you update that question? Are there other reasons we should list as options if we put it into the field again?

Health 2.0 Europe began, for me, in February, when I started thinking about some of the topics that the Patients and Online Communities panel would discuss. My post, “Privacy can kill, openness can heal,” kicked off a discussion about health data rights, the role of health professionals, security/confidentiality/privacy, patient-driven research, and why relatively few patients have joined formal patient communities while naturally-occurring communities on Twitter/MySpace/Facebook have blossomed.

The feast of ideas continued as I talked with Indu Subaiya, the moderator, and Gilles Frydman, Jamie Heywood, and Alexander Schachinger, three of my six co-panelists. I did as much research as I could on the other three panelists, but was a bit hampered by my inability to read German or Italian! I needn’t have worried — their presentations were fantastic (and in beautiful English).

I decided to use my opening remarks to dispel a couple of myths (the internet does not replace doctors, for example) and to hopefully spark a conversation (even if it was only in the audience members’ heads) about how it is time for Health 2.0 to evolve. Why?

Because nobody in that room needed to hear about the basics of patient networks.

Instead, it is time to talk about the power of health conversations informed by data, the self-experimentation that people engage in using information often found online, the impact of real-world experience on drug safety, and of course, participatory medicine.

Here’s what I said:

For those of you who don’t know me, I work for the Pew Research Center’s Internet & American Life Project, which studies the social impact of the internet. The best way to explain it is to say I am an internet geologist.  I measure patterns in the internet landscape. Here’s a very important distinction:  A geologist does not judge the rocks. She studies them. I don’t say one technology is better than the other. I don’t say one outcome is better than the other. I provide data to help you make those judgments.

All of my reports and data sets are available for free on the Pew Internet Project’s website and you can argue (or agree) with me about our findings on Twitter or on e-patients.net.

Today I’m going to give you just a few data points to think about as we discuss patient networks and participation in health care.

Pew Internet surveys show that about 8 in 10 American adults have access to the internet, but access varies according to someone’s age, education, income level, and health status.

Only about two-thirds of people living with chronic conditions go online, including people living with diabetes, heart conditions, high blood pressure, lung conditions, or cancer.

E-patients are listening to each other, consulting hospital reviews and doctor reviews, and posting which treatments work for them. Internet users living with chronic disease are more likely than others to look online for information about prescription or over the counter drugs – about half do so.

However, the internet does not replace doctors, nurses, and other health professionals.  93% of people living with chronic disease turn to a health professional for medical advice. The internet is a supplement. The internet is changing people’s relationship to information, which affects their relationship with health professionals, but we need to move past this notion that doctors should fear the internet’s influence any more than we need to fear the telephone.  This is evolution.

Part of the evolution is recognizing that patients and the people who love them are not just your target audience, but your colleagues. They are a resource for innovation and knowledge.

Instead of marketing to your audience, ask them to participate. Our data shows they are ready.

I think Health 2.0 is at a critical moment in its evolution.  Ask yourself how you are evolving. Are you adapting to the shift to mobile? Are you adapting to the rise of participatory medicine?  What is your goal and which technologies, policies, and practices best fit that goal?  As we crawl out of the primordial soup of the first decade of Health 2.0, think about whether you want to be a creature that walks on land, flies in the air, or swims in the sea.

I would argue that we have two archetypes on stage:  ACOR is a community of cancer patients who communicate via email: in text, in narrative.  PatientsLikeMe is a community of people with life-changing diagnoses who also communicate in text, in forums, but also share and compare data.  Cancer may lend itself better to the ACOR approach, whereas ALS may lend itself better to the PatientsLikeMe approach. Both are founded on a principle of openness. But before we go farther, let’s make sure we  are aware that by choosing narrative, by choosing data, by choosing open sharing or by choosing closed systems, we are evolving in certain directions.

Pew Internet data shows that the deck is stacked against people living with chronic disease.  They are likely to be older, less educated, living in lower-income households. But if they can get online, they have a trump card, a secret weapon: each other.  If they can get access to the internet, they adapt to the opportunity.  Chronic disease actually makes it more likely that someone will participate in the online conversation, to consume user-generated content, to seek and share peer advice. If they can adapt, why can’t you?

—

What followed was, in my opinion, a stellar discussion and series of presentations (and you know I’m honest about failed panels). I can’t wait for the video to be posted (as long as they leave off any frighteningly close shots of my face – yikes those cameramen liked the zoom) but in the meantime the feast continues:

On Twitter:

Archive of Health 2.0 Europe tweets (PDF)

Follow related conversations: #health2eu #hcsm #hcsmeu #WhyPM

On blogs:

Matthew Holt: Health 2.0 Europe–My Take (tying lots of threads together)

Denise Silber: Health 2.0 Europe (quite a few posts)

David Doherty: Health 2.0 Europe Review (unvarnished, even stinging, so his praise is especially appreciated)

Colleen Young: Health 2.0: Why SharingStrength will be in Paris this spring (wins my award for Most Valuable Tweeter and she seemed to soak up more knowledge than anyone else I met at the event)

Please join me at the table. What’s next for patient networks? What are you building today that is different from what was available 5 or 10 years ago?  What should be preserved as we go forward?

The passion we saw in the political campaigns last year is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. What are you doing in your work to harness that passion?

Pew Internet Project data is often used to benchmark where we are with tech adoption in the U.S.  Here is where we stand:

79% of adult Americans have access to the internet.

63% of adults have broadband internet connections at home.

56% of adults access the internet wirelessly on some device, such as a laptop, cell phone, MP3 player, or game console. When we include mobile access in our definition of the internet user population, the differences between African American adults and white adults disappear.

But where do we stand in terms of participation?

60% of e-patients (internet users who go online for health information) have engaged in some sort of social media related to health and health care, mostly consuming information created by other people, not posting their own thoughts.

42% of all adults say they or someone they know has been helped by following medical advice or health information found on the internet. That’s an increase from 2006 when 25% of all adults said that.

We ask the opposite question, but find it is a flat-liner: 3% of e-patients say they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006.

However, while mobile adoption is creating greater access and participation among African American adults, for example, there are other groups who remain disproportionately offline, such as people living with chronic disease or disability. They may be missing out on opportunities, but just as importantly, we are missing their voices in the conversation.

As the Society for Participatory Medicine moves forward, these twin issues of access and participation should be central to the conversation.

Again, what are you doing in your work to harness the passion of patients and caregivers? How are you going to help bridge the access gap, but even more importantly, the participation gap?