Frequently Asked (But Unanswered) Questions About E-patients

As I’ve written before, I love questions. It’s an honor to be handed someone’s nascent idea and to help them shape it (which is what I think a question really is). But this time I’m asking for YOUR input.

These excellent questions were sent to me by Liav Hertsman and his colleagues at Tel Aviv University, who hoped that I had all the answers.

If only.

I can tackle the first one on my own, but I need help with the others. If you have any tips to share — observations, journal articles, researchers interested in similar questions — please add them in the comments.

1. How would you describe the typical online active e-patient in terms of demographics?
2. In which stages of the diseases do e-patients usually need medical information the most? Why?
3. In which stages do they search for information about drugs?
4. How substantial is the e-patients’ drug search in comparison with their overall search about health?
5. How dominant and reliable is user-generated content (UGC) information in the eyes of e-patients?
6. Do e-patients who are interested in UGC also tend to cross-check the information, using professional sites or do they tend to rely solely on the UGC? Why?
7. What do the e-patients value more, specific information or general information? Is it treatment stage related?
8. In your opinion, should a health site offer diverse information or focus only on one area of expertise? Why?
9. What tools are important to have on a health site (i.e. communities, experts’ reviews, doctors’ ratings, drugs’ ratings, etc.)? Should a health site offer several tools? Why?
10. Do e-patients prefer a one-stop-shop site, where they can find every information related to health and every tool they need, or do they prefer to gather information from several sites, each with a specific specialization?
11. What causes an e-patient to return to a specific health site?

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60 Responses to “Frequently Asked (But Unanswered) Questions About E-patients”

  1. Susannah Fox says:

    I’ll kick things off:

    1) A “typical” e-patient in the U.S. is a woman between 18-49 years old, with broadband *and* wireless internet access.

    Source: “The Social Life of Health Information” (Pew Internet Project: June 11, 2009

    Specifically:
    http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/02-A-Shifting-Landscape/2-61-of-adults-in-the-US-gather-health-information-online.aspx?r=1

    • Liav Hertsman says:

      Dear susannah,
      First, I would like to thank you for the opportunity to gain the group’s insights about these crucial questions to our research. we are conducting a seven month research project at Tel Aviv Uni., Israel, regarding e-patients, and are very interested in your (readers ad ncontributors to the website) insights about these issues.
      Second, wehn you mention the e-patients, do you mean the person seeking the info. or the person that the info. is for? As most researhes argue that over 50% of the info. is gathered by the surfer for someone else who is infact the patient.

      • Susannah Fox says:

        Pew Internet uses the term “e-patient” to describe any internet user (age 18+) who has looked online for information about any of the health topics we name on our survey. Another caveat: our surveys are limited to the U.S.

        So that could be someone who looks on behalf of themselves OR someone else. Indeed, we find that when we ask people about the “last time” they looked online for health info, half say it was on behalf of someone else (asking about the “last time” hopefully is a recent enough occasion that it prompts an accurate answer).

  2. Great questions.

    I can share a few observations having moderated the SharingStrength | FortesEnsemble community of breast cancer e-patients over the past three years.

    #2. Users on our site seem to need and search for medical information most at the time of diagnosis.

    Community support is sought at several points in the continuum: at time of diagnosis, to help treatment decision-making, during treatment to help cope with side effects and as the end of treatment approaches. Many stay in touch or return to the community as mentors.

    #6. Moderation on our community forums includes sourcing professional resources for users to cross-check with UGC.

    I look forward to reading more.
    Colleen
    Editor of http://www.sharingstrength.ca

    • Susannah Fox says:

      Thanks, Colleen! You have a great perspective on these questions – please jump in on other questions if you have more to say.

    • Liav Hertsman says:

      Coleen,
      Your point about cross checking UGC with authoritative info. corresponds both with an e-patient survey we held and with experts’ reviews that we collected.
      Many thanks.

  3. Regression model carried out in Catalonia

    http://www.ictconsequences.net/2009/06/24/doctors-citizens-internet-satsu/

    reveals that citizens who use the email to communicate with health system and other ICT applications in relation to their health (so they can be considered as e-patients) are more likely to:

    - be an advanced ICT or networked citizen (so access, use and asses ICT in daily live)
    - demand health care services
    - to be empowered

    Age is in the model but it is not significant because elders are more likely to be patients but more unlikely to be advanced ICT or networked citizens.

    We have characterized e-readiness/awareness to Network Society following A typology of information and communication technology users developed by Horrigan, John B. from Pew Internet and American Life Project. It has to be mentioned that our results

    http://www.ictconsequences.net/wp-content/uploads/2009/06/citizens.jpg

    highlighted that Excluded, Disconnected and Basic ICT users are not taking advance of ICT in relation with their health, although they are more likely to be in worse health status than the Advanced and Networked citizens due to their socio-economic profile. Therefore ICT could generate new barriers for health for those who really need health services. On the other hand, the new generation of intensive health care demand will be different (our “digital natives”) will become intensive health care users in the next decades so health systems should be ready for them. So here goes my questions:

    - What are the drivers and the inhibitors to become an e-patient?

    - Could a typology of e-patient be developed following a multivariate statistic analysis?

    Congratulations for your wonderful work and for open your research process to the Community!

  4. Rupa Patel says:

    A pioneering group that is starting with the experience of breast cancer patients is Wanda Pratt’s iMed research group at University of Washington. Questions 5-7, 10 particularly may draw conclusions from some of their work. Research that is going on there involves locating patient expertise (Andrea Civan-Hartzler: when patients feel like the need to seek out solutions from someone who is going through a similar experience), recruiting help through online media in a such a way that it is not burdensome to either party (Meredith Skeels), and capturing unanchored work that might provide them with bits of information from multiple places (Pedja Klasjna)

    Recent references from the ACM’s Computer-Human Information conference this past April:

    Skeels, M., Unruh, K.T., Powell, C., & Pratt, W. (2010 – In Press). Catalyzing Social Support for Breast Cancer Patients. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’10). April 2010, Atlanta, GA.


    Klasnja, P., Civan-Hartzler, A., Unruh, K.T., & Pratt, W. (2010 – In Press). Blowing in the Wind: Unanchored Patient Information Work During Cancer Care. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’10). April 2010, Atlanta, GA.


    Civan, A., McDonald, D., Powell, C., Skeels, M., Mukai, M., & Pratt, W. (2010 – In Press) Bringing the Field into Focus: User-Centered Design of a Patient Expertise Locator. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’10). April 2010, Atlanta, GA.

  5. SusannahFox says:

    People think I have all the answers about e-patients. If only. A new FAQ (please contribute!) http://bit.ly/9L94Wk #hcsm

  6. RT @SusannahFox: People think I have all the answers about e-patients. If only. A new FAQ (please contribute!) http://bit.ly/9L94Wk #hcsm

  7. SusannahFox says:

    @flupianez @markhawker Hoping you will read & comment: Unanswered research questions about e-patients http://bit.ly/9L94Wk

  8. I'm puzzling over frequently asked and generally unanswered questions about #e-patients, via @SusannahFox: http://twurl.nl/8hdfow

  9. ICMCC Blog says:

    [...] me last week they are doing a study into the definition of the word. And Susannah Fox published a blog yesterday with questions about e-patients. And to be honest, I was thinking about writing about [...]

      • Susannah Fox says:

        EVERYONE: Please click through and read Lodewijk’s essay. I just posted the following comment on his blog:

        I’m honored to have played a part in inspiring this post — I love the concept of the “me-patient” (and the “we-patient” too).

        The word e-patient is indeed taking on a life of its own these days. It was coined by my mentor Tom Ferguson, MD, founder of the e-patients.net blog and I use it somewhat in homage to him. I also have found it a useful shorthand for a wordy concept: “adults with internet access who go online to gather health information.” Now, that may be just how *I* use it. Other people use it differently and still others refuse to use it at all. Reading the negative reactions to the word makes me think I should give it up. I’m seriously considering that because it’s starting to become a distraction from what is important and interesting: the people behind the label.

        Thanks so much for this essay. When I posted those questions (and by the way, they are not mine but were sent to me) I hoped that they would spark a research conversation just like this one. I’m grateful.

        • Lodewijk Bos says:

          Thank you Susannah. What I wanted to show is that even if you are the most vocal patient and even if you have been able to prepare yourself well, once you might find yourself within the process in many situation being a vocal (e-)patient simple doesn’t work.

  10. HealthGuy says:

    I have seen a number of research studies commissioned by various leading health sites supported by internal traffic that shows that the #1 activity for users of health sites is to check symptoms. People wake up, feel poor, and have no idea what is wrong or what to do. They used to go to the doc (or ER) and today they go online first.

  11. Susannah Fox says:

    I just received a NEW set of questions via email and got the researchers’ permission to post them:

    · Are there any specific studies related to online behavioral health resources that you might recommend?

    · Are there any specific studies directly related to the use of online health assessments?

    · Are there any specific studies that might support or refute the merits of utilizing online health resources for mental/behavioral health issues?

    If you have any links or insights to share, please do! Maybe we need a site dedicated to health internet research questions…

  12. SusannahFox says:

    @berlin_health20 I'd love to get your input on these research questions: http://bit.ly/9L94Wk #hcsm #health2eu

  13. Re: What are the drivers and the inhibitors to become an e-patient?

    I would suggest that in order to answer the above question, you first need to answer a more fundamental question:

    What are the drivers that pre-dispose one to “actively seek” or “avoid seeking” health information in the first place?

    Health Behavior Theory provides us with insights. The Elaboration Likelihood Model posits that people are more likely to become “more cognitively engaged” in things (like health) that they are interested in and find personally relevant.

    From my prior research experience, about 2/3 of adults place a moderate to high value/priority on their personal health. These people tend to believe that they are in control of their own health. This is called an internal locus of control. The remaining third tend to place a lower value of their health. Many of these people tend to believe that their health is a function of the environment, genetics, something outside their control. This is referred to as an external locus of control.

    In order therefore for one to become an e-patient it follows that they must first place a higher value of their own personal health and be internally motivated to sustain/improve their health.

    The most active health information seekers also tend to be a bit more distrustful of medical providers.

    What one must keep in mind is that a “cognitively engaged” health information seeker actively uses all health information sources. Some of my work preceeds the “web.” In the pre-internet days, these active health information seekers relied on doctors, TV, magazine articles, etc. for their health information.

    E-health is a medium not a message.

  14. SusannahFox says:

    Health geeks helping each other: Amazing comments from researchers worldwide http://bit.ly/9L94Wk #thanks

  15. Ari Herzog says:

    I heart this. RT @SusannahFox: Health geeks helping each other: Amazing comments from researchers worldwide http://bit.ly/9L94Wk

  16. Frequently Asked (But Unanswered) Questions About E-patients http://bit.ly/bLVSRr

  17. Frequently Asked (But Unanswered) Questions About E-patients | e-Patients.net http://ow.ly/1KxqF (@susannahfox) Your input??

  18. Susannah (or Liav),

    do you know what’s Liav’s field of studies at Tel Aviv University and which department is responsible for the research project?

    • Liav Hertsman says:

      My team and I are from the Tel Aviv University Recanati School of Business. This project is a research project in collaboration with the Technische University of Munich, as part of out MBA studies, focusing on a various business arenas.
      Our team’s focus is the online health information arena, with a focus on the United States e-patients.

  19. Hi Susannah,

    sorry for my delayed response on that great debate.

    Let me introduce some GER based self selected online-survey results based on 2100 health website visitors conducted Q4/2009-Q1/2010 (18 questions, 80 items):

    1. E-Patient Typologies:

    Chronics: having a chronic disease
    Caregiver: helping a chronic in family/friends
    Interested: healthy but interested

    …Chronics..Caregiver..Interested
    Avg. Age……..51 46 41
    % female…… 58 71 64
    % Academics 30 48 41

    Aspects of the digital ecosystem:
    E-patients trust more and benefit more from patient-generated-content on forums, media- and publishing house - websites with different social media elements and functions. They do not trust and use the healthcare stakeholders digital supply.

    Impact of digital healthcare online within the Chronic´s Typology:

    81% pose more or different questions to the gp
    80% can better decide for or against a treatment
    72% ca better life with their disease
    45% want another medication from their gp
    31% communicate with their health insurance different now

    This survey will probably soon be repeated in other central european countries.

    so far,
    best
    Alexander

    • Lodewijk Bos says:

      Alexander,
      What amazes me and maybe even scares me, is the e-patient typology you give: “Chronics..Caregiver..Interested”.
      As caregivers are no patients, nor are “interested” according to the definition you use, the only e-patients are chronic patients.
      IMHO you are leaving out the majority of patients that have to be included. In my view, any patient, chronic or not, who spent time exploring info about his condition to be able to engage in a discussion with his providers and to assume a role in his care/cure path is an e-patient.

      • Hi Lodewijk,

        right on your points. Maybe i should better separate the typologies.

        1. Of course an e-patient is s.b. with any form of disease.

        2. Caregivers are not automatically healthy or only interested but they do care and decide on treatment, medication questions etc on behalf of the person they care and who is maybe too old, handycaped or less digital literal, so they are even more than opinion leaders in that.

        3. The (only) Interested ones are by my definition and as a helpful separation not having a chronic diseas but simly just interested in all these contents and topic – i do see them also relevant in terms of public health audiences, future topics for them, gaining digital healthcare abilitites etc.

        best
        Alexander

        • Lodewijk Bos says:

          Alexander,
          Everybody will be patient one day.
          As these are self-adopted “labels” (I suppose), it would be interesting to see what the percentage of each of the 3 typologies is in the study.

  20. Alexander, this is great! We’d love to know more about the questions.

    Since this was self-selected, I’d especially like to know what kind of site it was.

    In the sentence about patient-generated content, I got lost. You say “E-patients trust more and benefit more from patient-generated-content on forums, media- and publishing house – websites with different social media elements and functions.” Are you saying that they trust pt-generated content on forums, and they also trust websites with social media elements? Or are you mainly saying that they trust platforms where people can discuss things, instead of read-only?

    I’d love to see how you measured that.

    Thanks, this is a great contribution.

    • Jon Lebkowsky says:

      Right, and would also like a link to the study if it’s accessible online?

    • Hi Dave,

      yes, i also need to differ more!

      (@Susannah, i may write an english article of all that… sorry… first things first =) )

      1. Global E-Patient Research sais and proofed that patient stories / in their language / with their relevance / with their social world view etc. helps other e-patients best; and they trust and benefit from that most, sometimes more than a gp talk

      2. Concerning my survey i tried to proof that for GER on 15 most visited healthcare websites and it came out that there is a user-traffic + “benefit perceived” + “trust mostly” correlation for the following:
      The more interactional and social media elements a website has, the more traffic it has and the more e-patients benefit and trust the website. Second result: all classical GER healthcare system stakeholder´s website do yet not have these elements, thus have the weakest points in user-traffic, trust and benefit evaluation (pharma+hospital+healthplan+government sites etc).
      I call them the healthcare-system internal sites in comparison with healthcare-system external sites from third parties, health 2.0 startups, media-houses, private e-patient forums etc. who win the race – and as a result we can define here some disruptive moments.

      The best is, that Susannah may upload here some slides of me i did present at some EU based congresses on that! Maybe the whole presentation?

      best
      Alexander

      • Susannah Fox says:

        Thanks, Alexander! This is an excellent addition to the conversation.

        If you can, please upload your final slide deck to Slideshare and post the link – that way you can be the one to choose the best version of it (I don’t think I have the final).

  21. RT @epatientGR: RT @jourpm: Frequently Asked (But Unanswered) Questions About E-patients http://is.gd/c4l0O #epatientGR

  22. ehealthgr says:

    RT @epatientGR: RT @jourpm: Frequently Asked (But Unanswered) Questions About E-patients http://is.gd/c4l0O #epatientGR

  23. It’s really amazing to see so many researchers patients post here to share their findings and opinions. Suzannah, you are right all this conversation thread deserves a webpage by itself.

    I have read Lodewijk’s blog post and was moved. It made me question myself why now I am an e-patient and in the 80s just a curious, willing to learn and understand patient. A patient thad wanted to challenge dreadful diagnosis. It is not internet that made me seek health info about yes, first symptoms, then therapies, then drugs, then interaction with other patients. I sought the info in libraries, in books, magazines, press. Today still it is not only the internet that is the source of savvy patients, it only facilitates search, while a good lot is done in hard copy.

    As the topic is of top interest for me and the Greek e-community and on the other hand it is not convenient to answer the questions here, I will right a post for my blog and come back to put a link here.

  24. SusannahFox says:

    Honored by thoughtful discussion on unanswered research questions: http://bit.ly/9L94Wk (new comments from @marinic + @berlin_health20)

  25. Susannah Fox says:

    Here is another excellent overview of health communications research history in the U.S. by Craig Lefebvre (aka @chiefmaven):

    The Challenge of Health Communication Research for Health Policy

    http://socialmarketing.blogs.com/r_craiig_lefebvres_social/2010/05/the-challenge-of-health-communication-research-for-health-policy.html

    Craig mentions my research, which has been funded by foundation grants, as well as the research conducted under the aegis of the National Cancer Institute. Who pays for the research in other countries? What role does that play in how the work gets done?

  26. SusannahFox says:

    @chiefmaven Thanks! I added it to the discussion here: http://bit.ly/9L94Wk – would love for you to join in.

  27. Amy Romano says:

    I’m not sure if pregnancy is on anyone’s radar for this project, but a 2007 Swedish study tells us that women most often use the internet at the beginning of pregnancy (e.g., once a diagnosis is made) and then the intensity of internet use picks up again in late pregnancy. The study is a few years old, but that is certainly consistent with how I think pregnant women still are using the internet. Also, user-generated content, specifically birth stories and birth videos, are becoming a cornerstone of childbirth preparation. You wouldn’t believe the number of views the childbirth videos on YouTube have(apparently 7.6 million people want to know what it looks like to give birth squatting!) and Google returns nearly a million results for a search for “birth stories”.

    • Susannah Fox says:

      Thanks for posting the slides, Alexander!

      • @Susannah,

        you are all welcome to contribute to the E-Patient and Health 2.0 / Medicine 2.0 picture (e.g. drivers, catalytic environmets vs. barriers and inhibitors of implementation… major not yet from me mentioned innovation trajectories (other forms of major tools/applications etc).

        I am planning a Health 2.0 Book but from and for a more EU based perspective covering contributions from and for all relevant stakeholders, although i see more innovation happening on your side of the ocean.

        merci!
        Alexander

  28. Liav Hertsman says:

    Here are some interesting findings from our survey, focused on some 225 american women, 45-64 years old, which somewhat correspond with Alexander’s & others’ research findings:
    1. 12% of women are interested only in professional (authoritative) information, all the rest are interested in UGC.
    2. 9% of women never read UGC, so from that stems that some of those who declare they aren’t interested still read it…
    3. 70% of women are interested in experts’ reviews but only 56% are interested in other people experience (UGC).
    So, the dominance of UGC is still as second best, after experts’ review.
    4. Reliability is an issue in UGC, but surprisingly to us – less than we expected: 35% of them find the info. somewhat reliable, and 40% – neither reliable nor unreliable. All the others tend to find is unreliable.
    5. In former researches we foudn that e-patients very oftern search for others. In our survey we found some support to these findings; 19% of women search for health info. for their spouse frequently / always, and some 40% do it sometimes. 17% search for info. for their child frequently / always and 26% do it sometimes. Women search mostly for themselves : 60% of them do it frequently or always, and 33% do it sometimes.

    Please feel free to comment and feedback.

    I would like to thank you all (and especially Susannah, for making this happen in the first place) again for your insights thus far.

  29. bacigalupe says:

    Frequently Asked (But Unanswered) Questions About E-patients http://bit.ly/9RuEB4 (via @healthglobal) #hcsm

  30. bacigalupe says:

    Frequently Asked (But Unanswered) Questions About E-patients http://bit.ly/9RuEB4 (via @healthglobal @manyez) #hcsm

  31. Frequently Asked (But Unanswered) Questions About E-patients http://bit.ly/9RuEB4

  32. Dave Walker says:

    RT @bacigalupe Frequently Asked (But Unanswered) Questions About E-patients http://bit.ly/9RuEB4 (via @healthglobal @manyez) #hcsm

  33. Fascinating thread: Frequently Asked (But Unanswered) Questions About E-patients http://j.mp/aDSogW

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