One of our core findings (8 in 10 internet users, or about two-thirds of U.S. adults, look online for health information) is based on a series of questions that is tweaked in each survey.  We re-word or separate concepts, cut some topics, and add others. Are there topics missing from the list? Which ones deserve to be repeated this year? No promises, but I asked for similar feedback in 2008 and implemented a few of the suggestions (see the “2008 only” topics below).

a.         Information about a specific disease or medical problem (asked in 2002, 2004, 2006, 2008: results)

b.         Information about a certain medical treatment or procedure (02, 04, 06, 08: results)

c.         Information about experimental treatments or medicines (02, 04, 06, 08: results)

d.         Information about alternative treatments or medicines (02, 04, 06, 08: results)

e.         Information about diet, nutrition, vitamins, or nutritional supplements (02, 04, 06: results)

f.          Information about exercise or fitness (02, 04, 06, 08: results)

g.         Information about prescription or over the counter drugs (02, 04, 06, 08: results)

h.         Information about immunizations or vaccinations (02, 04, 06: results)

i.          Information about how to quit smoking (02, 04, 06: results)

j.          Information about problems with drugs or alcohol (02, 04, 06: results)

k.         Information about depression, anxiety, stress or mental health issues (02, 04, 06, 08: results)

l.          Information about environmental health hazards (02, 04, 06: results)

m.        Information about sexual health (02, 04, 06: results)

n.         Information about a particular doctor or hospital (02, 04, 06: results)

o.         Information related to health insurance (02, 04, 06: results)

p.         Information about Medicare or Medicaid (02, 04, 06: results)

q.         Information about dental health (2006 only: results)

r.       Information about doctors or other health professionals (2008 only: results)

s.       Information about hospitals or other medical facilities (2008 only: results)

t.        Information related to health insurance, including private insurance, Medicare or Medicaid (2008 only: results)

u.       Information about how to lose weight or how to control your weight (2008 only: results)

v.        Information about how to stay healthy on a trip overseas [IF NECESSARY: such as immunizations and shots] (2008 only: results)

And here’s the catch-all to scoop up any topics we missed:

w.      Information about any other health issue (2008 only: results)

At any point in your last search for health information online did you feel any of the following things? At any point, did you feel…?

Based on those who look for health information online.

a. OVERWHELMED by the amount of information you found online
(We last asked this series in August 2006, when 25% of e-patients said yes)

b. EAGER to share your new health or medical knowledge with others
(51% said yes in 2006)

c. CONFUSED by the information you found online
(18% said yes in 2006)

d. RELIEVED or COMFORTED by the information you found online
(56% said yes in 206)

e. FRUSTRATED by a lack of information or an inability to find what you were looking for online
(22% said yes in 2006)

f. CONFIDENT to raise new questions or concerns about a health issue with your doctor
(56% said yes in 2006)

g. FRIGHTENED by the serious or graphic nature of the information you found online
(10% said yes in 2006)

h. REASSURED that you could make appropriate health care decisions
(74% said yes in 2006)

The “headline” number from this series was that last one: three-quarters of internet users who had recently looked online for health information said they felt reassured that they could make appropriate health care decisions. On the flip side, 25% said they felt overwhelmed (and a closer look at the data revealed that internet users with less education were more likely to report feeling overwhelmed).

If you had to choose two positive and two negative feelings to ask people about, which ones would you choose? Or, put another way, which two feelings would you cut — one positive, one negative?

The Center for Studying Health System Change: Level of Activation for U.S. Adults, 2007

The most activated patients tend to be younger, more educated, and have private health insurance. Hispanics are less likely than non-Hispanics to be activated patients. People living with chronic conditions have lower levels of activation as a group, but there are differences among various conditions: People with depression are likely to be less activated; people with cancer are likely to be more activated.

These lines caught my eye:

It is important to note that it is difficult to discern the direction of causality in the observed relationships as the data were collected at a single moment in time. Longitudinal data are needed to determine whether poor health status causes lower activation, or whether low activation and passivity contribute to poorer health. Likely the causality operates in both directions, although low activation resulting from poor health may lead to a vicious cycle that precludes behaviors that could improve health.

That, to me, is a Holy Grail for e-patient/participatory medicine research. This study is important new evidence, helping me to put into context my own observations about how broadband and health status affect health care information searches, but we really do need longitudinal data.

I recommend checking out their report for a few reasons:

1) Many of their findings ring true to me. For example:

Myth: Consumers trust their doctor to make decisions for them.
Reality: The majority of consumers want to share decision-making with their doctor; only 20% are content to let their doctor control those decisions unilaterally.

Myth: Consumers are afraid to use the Internet for clinical transactions in health care, fearing loss of privacy and security.
Reality: Consumers are comfortable using the Internet to exchange clinical information with their doctor, especially if it results in better coordination of care and improved service. (They believe their doctors should make greater use of the Internet to provide access to medical records, test results and other types of information.

2) Deloitte Consulting is a big player in this field and they are (or should be) tuned in to discussions about participatory medicine.

3) We should get used to seeing online surveys cited widely, despite their drawbacks.

I’m going to spend some time comparing their health consumer typology (24% of consumers are “Sick & Savvy” and 8% are “Online & Onboard”) with the Pew Internet Project’s communications technology typology. I wish they had a quiz so we could all identify where we fit!

One aspect that I think merits further attention is how people interact with various information sources when they are dealing with a serious illness or health concern.

For example, in the chart on page 15 of the report, “Source of Help by Type of Problem,” we see that eight in ten respondents who recently needed health information said they turned to a professional for advice. About half turned to friends and family; 46% turned to the internet. In other words, professionals were the dominant source for people with health questions, which is not what we see in any of the other topics covered in the survey: education, taxes, Medicare/Medicaid, changing job status, or Social Security. For those topics, the internet or a government agency played much more important roles than did professionals.

This is different from some findings I highlighted in our “E-patients With a Disability or Chronic Disease” report. According to HINTS 2003, sponsored by the National Cancer Institute, 49% of adults said they would go first to a health care provider if they had a strong need to get information about cancer. In the same survey, however, people who said they had recently looked for cancer information for themselves were likely to say they looked online – 46%, vs. 11% who had consulted a health care professional.

The differences can mostly be attributed to the fact that each survey was asking somewhat different questions. The “libraries” survey focused on people’s actual behavior after they learned they had a health problem, whereas the HINTS study asked about potential future behavior. It’s likely that for most people, both findings are correct. If they had been through a serious problem they would almost surely have consulted a doctor; and if they were just starting to explore a possible health problem, they might go to the internet to try to figure out what was going on.

I don’t think many people dispute the e-patient trend, but it is important to remember that the internet is more often a supplement to other sources, not a replacement.

Now seems like the right time to post some data that I’ve been holding back, waiting for the right opportunity to talk about it publicly.

In August 2006, we conducted an RDD survey which included the question:

“Do you ever use the internet to participate in an online discussion, a listserv, or other online group forum that helps people with personal issues or health problems?”

12% of internet users say yes.

I think the key word is “participate” since it implies that you post as well as read/lurk. That number rings true to me since it is right in line with the other content creation/social media activities we track – just 8% of internet users keep a blog, whereas 39% of internet users read blogs, for example.

In the past we asked a broader question and got a much bigger number:

“Do you ever use the internet to go to a website that provides info or support for a specific medical condition or personal situation?”

58% of internet users said yes in November 2004.

Again, question wording is key. In this older question we asked about whether someone visited a site, not if they participated in the discussion, which opens it up to the giant lurker population. Also, I wonder if it made a difference that the last phrase the respondent heard was “personal situation” (whereas the 2006 version ended on “health problems”). There are multitudes of sites that cater to all the personal situations one might be facing, many of which have nothing whatsoever to do with health & health care. I updated the wording for the August 2006 survey because I wanted to capture the truest picture I could of the core e-patient population – those who are actively sharing their knowledge and contributing to the online world, not just surfing through it.

David Stinchcomb showed how isopleth maps can be used to smooth regional data into a lovely “weather map” connecting low belief in the risk of smoking with the reality of high lung cancer mortality rates. (If you like that kind of data mapping, check out Social Explorer.)

Jon Miller argued for the need for “biological literacy” since the 20th century was the “age of physics” and the 21st century will be the “age of biology.”

Michael Link reminded us to watch out for the effect of cellphone-only households on classic phone survey results. A snail mail survey found that 52% of cell-only respondents had been recently tested for HIV vs. 35% of landline respondents, for example. 40% of cell-only respondents are binge drinkers vs. 23% of landliners. (This was news to me since my colleagues in the political end of the Pew Research Center had found that cell-only respondents were politically akin to landliners. Watch this space for updates for the 2008 election cycle!)

Tenbroeck Smith said that the American Cancer Society call center handles about 1 million calls per year, while cancer.org handles about 20 million visitors.

My presentation focused on how e-patients are using the latest participatory media (Flickr, MySpace, YouTube, etc.) to document, advocate, educate, and illuminate their own health journeys.