Crowdsourcing a Survey: Reassured? Overwhelmed? Eager? Confused?

The Pew Internet Project is finalizing our fall health survey and we are now in the painful cut phase. Here’s a question I’m hoping to save in a shorter form:

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?

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Comments

8 Responses to “Crowdsourcing a Survey: Reassured? Overwhelmed? Eager? Confused?”

  1. The ones I think could be most revealing:

    Overwhelmed. (A downward trend would suggest adoption and e-patient skill levels are increasing; lack of a downward trend would say we need to do a better job of making the right info easily available.)

    Frustrated. That was my sense during my own research. Even today (I tried again recently) it’s hard to find the info that I found valuable at the start of my disease – it only came from my peer community, and I never would have known about them (ACOR) if my doctor hadn’t told me.

    Confident to raise questions with my care team.

    Reassured about my ability to make healthcare decisions. (Actually, I’d call it “confident about my ability,” because when I started I didn’t know, and I *became* confident. But I’ll accept Reassured.)

  2. Christine Gray says:

    I would consider a new question: Shocked or frightened at the gap between “best practices” or legitimate medical information obtained from the Internet and a physician’s unwillingness to even consider it. The gap between e-community knowledge (best practices) and local practice.

  3. Mike says:

    Susannah —

    I suggest dropping “Frightened” (because it seems to be less valuable in the overall intent of the question — the shock impact of the content doesn’t necessarily negate it’s value to the patient) and “Eager” (as your description for that can also apply to the “Confident” reply).

  4. Nina B. says:

    These are all good and all relevant, but if I had to cut two, I’d slice “eager” and “frightened” in favor of the others that I think are even more universal, no matter what kind of health issue.

  5. BFF says:

    I’d be very interested in seeing the change, over 2 years, on “overwhelmed” and “confused.” Perhaps the users are now more skillful at dealing with overload. Or perhaps the info providers have honed their presenting skills. Or not.

  6. I agree with BFF. Every cancer patient or supporter feels overwhelmed at the beginning. I don’t see many experienced ACOR users who are overwhelmed after some support, information and action.

    They are frightened about the disease, but not frightened by the e-community. My personal experience with the ACOR lists is that the folks are educated, focused, and neutral. They point you to pub-med and relevant articles. They direct you to the correct experts. They help you sort through information. As a matter of protocol, they REPEAT information often, recognizing that shocked users may be ready to revisit at a later date. We always tell our newbies, “Don’t worry about getting it all right now. We always re-post. The list is always here for you.”

  7. Because Dr.’s are never wrong???

    It’s not about just treating the diagnosis, but also the faith and assurance that the Dr.’s diagnosis is 100% accurate. How dare you, you are not God, to which you are not perfect.

    My son’s first diagnosis was in the ER as swollen lymphnodes from a virus and sent home on antibiotics. Because “tumors don’t present that quickly.” Luckily I didn’t listen and brought him into his Pediatrician the next day for our 2nd opinion. She started blood tests and scheduled an ultrasound for my reassurance, all along saying “I’m 99% sure it isn’t cancer.” Still getting nervous ase the days past, I insisted on admitting him to the hospital, where weeks later, after infectious disease dead ends, 1 CAT scan and 1 MRI later, 3rd 4th and 5th opinions later. . .Stage 3 Rhabdomyosarcoma.

    I’m so glad we didn’t sit around and wait for those antibiotics to kick in from our 1st opinion in the ER.

    About a month into treatment, I tracked down the original Dr (which was difficult since the staff felt that it wasn’t appropriate to speak directly to his holiness). I reminded him of my son, his presenting symptoms, and the outcome, and his response was an unaffected “wow.” My intenet was that maybe he would pull the file and review the case to suggest that he may have done more, but I’m sure we were forgotten about shortly after the call.

    Honestly, I had just gotten the bill in the mail, and thought to myself that he was wrong, so why should I have to pay??? But that is a topic for another time.

    It’s funny after his diagnosis I looked up Rhabdo, and he had every single presenting symptom, I guess from now on, I’ll be consulting the web prior to arriving to the Dr. so that I can be my/their own advocate.

    Kelly,
    Mom to Anthony 4 Dx 2/08 Stage 3 ARMS parameningeal site, NED 8/08, ARST0431 complete by 3/09, Zackary 2, and Matthew 1

  8. Susannah Fox says:

    Thanks, everyone! We are cutting “eager” and “frightened” from the survey, but saving the question (at this point in the horse trading, at least). I appreciate the thoughtful comments.

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