Map the frontier. Bring data. (More coming soon!)

The Pew Internet Project and California HealthCare Foundation will released our latest report on the internet’s impact on health and health care tonight at midnight (Eastern U.S. time). It is titled, “The Social Life of Health Information, 2011” (and for those following closely, that is a hint that we are updating trends we first measured in our 2009 report by the same name).

The report contains some data I have been itching to share with this community for months. In fact, I couldn’t resist previewing a bit of it at Mobile Health 2011 last week. Here’s the text of what I said, just to whet your appetite for the full course of fresh data:

The Web 2.0 Summit backdrop last fall was an imaginary map of the online world and the territories that have been claimed by different companies.

Mark Zuckerberg came on stage and said,

Your map is wrong. The biggest part of the map has got to be uncharted territory. This map makes it seem like it’s zero-sum, but it’s not. We’re building value, not just taking it away from other companies.

The first thing that struck me about his comment was that it embodies the idealism that I see all the time in this industry. Leave aside the cut-throat attitude and billion dollars for a moment and think about what his statement means for you, for all of us.

We know something important is out there, and it is big, it is potentially world-changing and we are idealistic enough and brave enough to believe we can prepare for it and even take advantage of it.

The second thing that struck me is that a map of the health world would be similar. For most people, it is unmapped, unfamiliar territory.  As Susan Sontag wrote:

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

It’s not surprising that when someone gets dropped into the kingdom of the sick, they grab their phones, they grab their laptops, they grab their loved ones, and they go. They go into that unmapped area of a new diagnosis, a new drug, a new treatment, a new goal to lose weight, quit smoking, or get their numbers under control. They consult experts. They call & search & text. They study up. They band together and form posses. Pioneers share their maps with newcomers, letting them know which clinical centers are the best for a certain condition. They post warnings, such as the one brought to us by PatientsLikeMe last week when they published their findings from a patient-driven clinical trial: no, lithium does not stop the progression of ALS. It was bad news for people living with ALS, but good news for the field, proving that patient-driven research is valid. And the number one thing that people try to do? To get the hell out of the kingdom of the sick.

Who in this room is going to help them? Who in this room is developing something that is going to change lives? And what are you bringing on the adventure?

I’m bringing data – on internet use, cell phone and wireless penetration, demographics of who’s online and who’s not, people’s attitudes and actions. I’m bringing data and so should you.

Why?

Because data will help you make better decisions. Data will chart your course. Data will show you what really works.

The Pew Internet Project is a GPS for navigating this emerging world.

Let’s start with some bedrock data. This is the equivalent of Europe in the 15th century – completely mapped out. The known world of internet use, especially as it pertains to mobile & health.

Three-quarters of U.S. adults go online.

Six in ten U.S. adults gather health info online. But doctors, nurses, and other health professionals continue to be the first choice for most people with health concerns.

59% of U.S. adults go online wirelessly, with a laptop, mobile device or tablet.

Three key points about wireless:

  • Tablets: We are in the field now collecting data on the percentage of U.S. adults who own tablets – stay tuned for new numbers (hint: they are higher than we expected). But note that we don’t expect the overall wireless number to change – these tablets are going to already-wireless homes.
  • Local: Nearly half of all American adults (47%) report that they get at least some local news and information on their cellphone or tablet computer. Look to our other non-health reports for similar insights about politics, news, gaming, teens – these are habits and behaviors that people will likely port over to health when they need them.
  • Health: wireless users are voracious information consumers, including some interesting trends within health – 48% of wireless users look online for information about doctors or other health professionals, compared with 31% of internet users who do not have mobile access.

85% of U.S. adults have a cell phone. Young people are the most likely to have cell phones, but access is well-distributed across age groups.

One in four adults use apps – and it’s even lower for health apps. Some say that’s proof that apps don’t work, time to move on to the next fronteir. Others say it’s proof of a nascent market, ripe for brave pioneers.

Three key points about what mobile can do that the internet cannot:

  • Reach a diverse audience. African Americans, Latinos, and young people – in general and with health info.
  • Make place irrelevant – otherwise known as location-disabled. Get the information out to everyone, no matter where they are. As in, “I need this obscure information right now, even though I’m in the middle of nowhere” is location-disabled.
  • Make place extremely relevant – otherwise known as location-enabled. Help someone in a certain place connect with local resources. For example, “where is the nearest clinic” is location-enabled.  That’s what we see driving mobile adoption in many ways – hyper-local news and information. We have new data coming soon that shows that local information is driving mobile adoption: traffic, weather, news, restaurants, etc.

But where are the pioneers heading? Where is the frontier?

Peer-to-peer health care.

The online conversation about health is being driven forward by two forces:  1) the availability of social tools and 2) the motivation, especially among people living with chronic conditions, to connect with each other.

Pew Internet has identified two important trends in our data. One is what we call the “mobile difference” – hand someone a smartphone and they become more social online, more likely to share, more likely to contribute, not just consume information.

The other is what we call the “diagnosis difference” – holding all other demographic characteristics constant we find that having a chronic disease significantly increases an internet user’s likelihood to say they both contribute and consume user-generated content related to health. They are learning from each other, not just from institutions.

These are not yet mainstream activities, but there are pockets of highly-engaged patients and caregivers who are taking an active role in tracking and sharing what they have learned.

  • A significant segment of internet users have tracked their weight, diet, exercise routine or some other health indicators or symptoms online (report coming out soon on this trend).
  • One in five internet users have gone online to find others who might have health concerns similar to theirs.
  • The incidence of both those activities is higher among people with a wireless connection.

Some closing thoughts:

E-patient Dave deBronkart has taught us that “patient” is not some third party. It’s you. It’s me.

As patients: Own the fact that we have as much to share and contribute to our health as any health professional has to share and contribute.

As developers: Enable an environment in which people can share. At the beginning, only a slice of the population will share, but the benefits will entice others.

Finally, I’ll end with one of my favorite quotes:

In God we trust. All others must bring data.

Wherever you’re headed, bring data. Our data, your data, other people’s data – bring it all. And use it to map the frontier.

Print

Posted in: general | trends & principles

 

 

 

Comments

Leave a Reply