The Pew Internet Project will conduct a national telephone survey this fall about the internet’s impact on health and health care. One of the first tasks is to look at our tried and true “trend” questions and decide which ones we should repeat as is and which ones need to be updated.
Since I benefit so much from reader comments on this blog, I’d like to crowd-source some questions for this survey.
The first question I would like to consider is the “screener” question which yields our estimate that 80% of internet users go online for health information.
ASK ALL INTERNET USERS (Q6a=1 or Q6b=1):
HEA05 Now, we’d like to ask if you’ve looked for information ONLINE about certain health or medical issues. Specifically, have you ever looked online for… (INSERT FIRST ITEM)? Have you ever looked online for… (INSERT NEXT ITEM: ROTATE)?
[ASK a & b FIRST, AS A PAIR IN ORDER]
a. Information about a specific disease or medical problem
b. Information about a certain medical treatment or procedure
c. Information about experimental treatments or medicines
d. Information about alternative treatments or medicines
e. Information about diet, nutrition, vitamins, or nutritional supplements
f. Information about exercise or fitness
g. Information about prescription or over the counter drugs
h. Information about immunizations or vaccinations
i. Information about how to quit smoking
j. Information about problems with drugs or alcohol
k. Information about depression, anxiety, stress or mental health issues
l. Information about environmental health hazards
[ASK m-p LAST, IN ORDER]
m. Information about sexual health
n. Information about a particular doctor or hospital
o. Information related to health insurance
p. Information about Medicare or Medicaid
q. Information about dental health
1 Yes, have done this
2 No, have not done this
9 (DO NOT READ) Don’t know/Refused
(Here is a PDF of the 2006 health topline if you want to see this question in context.)
Tom Ferguson helped me write the original list of 16 health topics in 2002. Mary Jo Deering and Cynthia Baur (who were then at HHS) suggested changes based on what they were learning from the Healthy People 2010 project. Mental health experts advised us to lead that question with “depression, anxiety, stress” in order to de-stigmatize it. Many others contributed to the list, but Princeton Survey Research Associates crafted the final language and question order.
The series was repeated as is in 2004. After hearing strong arguments from dentists, we were convinced to add “dental health” as topic #17 in 2006, but the additional question did not increase the total percentage: 80% of internet users had looked online for at least one of the issues we asked about (essentially the same as what we found in 2002 and 2004).
So, here is our biennial chance to tweak the wording or add a topic. For example, should we separate Rx and OTC drugs? If so, it will break the trend but we will finally know the breakdown between the two. Is there a topic that’s missing? I can’t promise we’ll include it, but I do want to hear about it.
I would love to see a couple of questions that could help us figure out if e-patients have clear political opinions.
I know that the Pew Internet Research project is purely and strictly non-partisan. Nonetheless it would be very, very interesting to look into the political engagement of e-patients. Are they more inclined to be Democrats or Republicans? I don’t remember ever seeing this simple question asked. But look at this and you’ll understand why I asked John Jost if he would consider working on the political inclinations of e-patient populations.
Thanks, Gilles — that’s a great suggestion! We are non-partisan, but it’s within our mission to ask about partisan issues.
You might be interested in the Pew Internet Project’s report on The Internet and the 2008 Election:
I think we will find exactly the same kind of statistics if we start asking e-patients. And you collected all this data BFA (Before Financial Armageddon).
And my colleague Aaron Smith wrote a commentary on Friday about that connection: The financial crisis online
Let’s add: seeking a peer community, such as my ACOR group (thanks Gilles).
People keep telling me they (or someone) has a new diagnosis and they don’t know where to start. Finding expert peer communities is important, and it would be good for Pew to track adoption of this Web 2.0 effect.
Thank you for the opportunity to collaborate.
Although I am starting to question the relevance of the ‘screening’ questions, they do look adequate and consistent with your previous efforts.
My only specific comment would be to consider a separate question exploring the information seeking patters for ‘obesity and overweight’ given their prevalence is a health concern for adults, children and adolescents in the United States.
Your questions on diet/nutrition and exercise/fitness may capture the interest on weight matters but not as granularly as a specific question.
Anyway, my two crowd-sourcing cents.
What about asking if they use the internet to find a doctor?
Carlos, thanks very much for your comments. I agree that the “screener” aspect of this question may be falling by the wayside since I’d like to ask a range of health info-gathering questions of all respondents, not just those with internet access and not just those who say they have already looked online for health info. I also agree that breaking out obesity & overweight could be an important distinction for those diet & fitness questions.
480, I also very much appreciate your question. I’ve heard from a few people offline that finding a doctor is a key activity in what we are calling participatory medicine. Other people counter that it’s an elite activity, that most people don’t have a choice about who they get to see. The NYT article on finding Dr. Right lay out the scenario that I’ve heard about most often — a mix of offline and online resources are brought in, esp. when looking for a specialist. I’d love to hear more about this topic if anyone has other studies or articles to share.
I am glad my recommendations were well taken. I’ll be more than happy to comment on the other survey questions.
A colleague and I are starting a review article on finding a doctor 2.0. We have a preliminary list of recommendations and would love your feedback.
Another possible new item would be whether the respondent looked online for information about a lab result they received. As more PHRs put lab results online there may be more people who need help interpreting the result, the normal range, etc.
Also, I like the suggestion that was posted about seeking a peer community or peer support group.
I will try to add a question about lab results.
We are also planning (at this point) to ask our classic “Do you ever 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 said yes in August 2006) Plus we are hoping to add some questions which will update this for 2008, such as how someone might use a social networking site to gain peer advice/support. Any suggestions about how you have observed that type of usage are welcome!
The Pew Studies are great! congratulations.
Something that I would suggest is some questions about accessing Patient Generated Content to find information “living with” aspects.
I just presented a small study about it, here . I belive that a lot of patients are looking into patients blogs, videos, etc. to find answers to questions about their everyday life coping with a disease. I think that depending of the e-patient needs they go to different health information providers. It could be very interesting to know why/how the e-patients decide to seek information form one provider and not other.
Best regards from North Norway,
Thanks, Luis! Your study is a good start toward what we need more of — evidence to show the current state of participatory medicine. The questions you asked remind me of a study designed by Tom Ferguson and Bill Kelly, described in Chapter 4 of the “e-patients” white paper: Online Groups Supplement, but Don’t Replace, Doctors
Here is a quote:
Most of our respondents were seriously ill patients dealing with conditions like breast cancer, prostate cancer, ovarian cancer, and hepatitis C. We asked them to tell us which of the following three resources-their specialist physicians, their primary care physicians, or their online support groups-they would rate most highly in of the following categories:
Best in-depth information on my condition
Best practical knowledge of my condition
Best technical knowledge of my condition
Best for helping me find other medical resources
Best in helping to diagnose my problem correctly
Best in helping and advising on management after diagnosis
Most compassion and empathy
Best in helping with emotional issues
Best in helping with issues of death and dying
Most likely to be there for me in the long run
Online groups ranked significantly higher than either generalists or specialists for convenience, cost-effectiveness, emotional support, compassion/empathy, help in dealing with death and dying, medical referrals, practical coping tips, in-depth information and “most likely to be there for me in the long run.” By a narrow margin, online health communities were also rated as the best source of technical medical knowledge. Specialist physicians were rated highest for help in diagnosing a condition correctly and for help in managing a condition after diagnosis.
I hope that the Pew Internet/California Health Care Foundation study (Yes! We won additional funding!) can be another link in this chain.