Characteristics of patients (n=19).
View this table
Data Collection and Analysis
All team members read de-identified transcripts and developed a codebook through an iterative process . Using the codebook, two members of the team independently coded the transcripts in NVivo, a qualitative software application. The data were then analyzed using a grounded-theory approach (NVivo qualitative data analysis software; QSR International Pty Ltd. Version 10, 2012). Coding inconsistencies were discussed and resolved through consensus, with the input of a third team member when necessary.
Participants candidly discussed how they used the Internet to search for health information. Through these discussions, several themes related to health motivations, content preferences, and practical applications of searching emerged. Below we summarize these data in the context of three major themes: motivations for searching, searching strategies and techniques, and information content preferences.
Motivations for Online Health Searching
A variety of factors play a role in initiating online searches for health information. The motivations that our participants described generally fell into three main areas: (1) symptom troubleshooting, (2) searching to enhance a clinic visit, and (3) proxy searching.
Perhaps the most common motivation for everyday searching is a phenomenon that could be called “symptom troubleshooting”. With commercial online resources and other government or hospital/university-based sites that provide free, anonymous, and immediate information, many individuals’ first stop to learn more about a specific symptom is the Internet. A participant from Focus Group (FG) #3 mentioned: “For me, it was very important when I think I have a symptom, the first place I look is the Internet, especially to search for the symptoms”.
Once a particular symptom or disorder of interest is identified, participants reported that the Internet made it very easy to get more detailed information to help identify underlying causes. As a participant of FG #3 explained: “For instance if I have a pain in my foot, I am going to start looking for…information that might specify if it’s in the heel or in the toe…then I search [for] why [I have] the symptom or, if I know what I have, then I might search…to see if I can match the symptoms to that”.
Using the Internet provided a quick and easy way to troubleshoot symptoms; however, there are certain situations where using the Internet is more likely. One participant explained that the Internet is especially more convenient for superficial symptoms: “You can’tjust go find a doctor somewhere and be ‘hey, can you look at this rash on my leg’ because I hear doctors hate that” [FG #1]. The Internet provides a level of anonymity that may be helpful in situations where individuals perceive their problems to be bothersome or nuisances to doctors.
Participants often cited practical reasons related to time and money when describing their motivations for turning to the Internet for medical information or advice. One participant explained that although consulting a professional in person can be preferable, “especially when you are very concerned about your symptoms”, in other cases, as he stated, “at 9:00 at night you are not going to be able to call the doctor” [FG #3]. Another participant in FG #1 also echoed a similar sentiment: “It can’t be readily available, you may have to make a doctor’s appointment and that could take a while…and cost money and financially that might hold you back too; something that a fast care isn’t going to be able to fix”.
For non-serious medical issues, participants were generally comfortable using the Internet as a troubleshooting tool. Once a health care provider is involved, however, searching assumes a different role. In this context, participants reported using Internet searching as a means to enhance a clinic visit and be more well-prepared and well-informed during the entire health care experience with their providers. In these situations, Internet searching proved to be a valuable tool in preparing for the clinic visit. As one participant in FG #1 explained, Internet searching allowed her to walk into a surgery consultation armed with a prior understanding of possible procedures: “I specifically knew all the three main surgeries; I knew what I liked from them, what I didn’t like of them”.
This online preparation gave her the information and ability to “say what about this, what about that, why are we doing this, why are we doing that?” [FG #1]. Participants agreed that such preparation facilitates “a more enriched experience” [FG #1] and allows patients to “become more knowledgeable” and “ask better questions” to providers [FG #2]. This participant goes on to explain how such a dynamic increases communication and education and “builds the patient/provider relationship”; “If you are taking an interest in what it is you have and asking the kind of questions that allow them to further educate you, I think that shows a real interest” [FG #2].
Another participant expanded on this idea and explained how an enriched patient/provider relationship involves more than developing a healthy rapport and can actually improve health outcomes in certain situations: “I mean my mom had a weird thyroid thing and she was all over the Internet, and still is, but she would bring stuff to her doctor and she actually like did solve some mysterious things and she gave stuff to her doctor and her doctor I think is a great doctor but there is so much information and the doctors don’t get it all” [FG #2].
In the previous example, the participant’s mother used the Internet for two of the main motivations that emerged from our focus groups: to troubleshoot a thyroid condition and to enhance her visits with her doctors. Although this participant’s mother was able to do the searching and advocating on her own, many participants had parents, grandparents, or other family members who were not as comfortable or capable. These situations highlight the third main motivation for searching that our participants discussed: searching for someone else, or proxy searching. All of the focus groups had participants who reported searching on behalf of someone else. For many, it was a frequent occurrence.
Computer literacy was often cited as a main reason for proxy searching, as many participants had relatives who were “afraid of using it [computers and the Internet]” [FG #1]. However, proxy searching was also a useful tactic when the individual searching sought to protect their relative from additional emotional burdens, even when the relative was computer literate. One focus group participant explained: “Well, I have done searches for my parents before…When I looked up stuff [about] breast cancer on the Internet, [I told them] do not look it up because you’re going to be scared. As a third person, even though she is my mom, I know how to decide and to remove myself from the situation, but she is not going to be able to do that” [FG #3].
Searching Strategies and Techniques
In terms of the actual mechanics of searching, participants described using a common set of steps and procedures that began with commonly used search engines, continued to shop around for information from various sources, and ended with information saturation and exhaustion.
Regardless of the underlying motivations for searching, almost all searches shared a common starting point from an online Web search engine: Google. Ease of use—“you can ask the most stupidest questions and have a pretty good shot of getting an answer” [FG #1]—and quality of results—“[Google] brings up the most variety of answers” [FG #1]—were the primary reasons for choosing Google cited by our participants.
Although Google is by far the most common first step to searching, its main use is simply as a tool to reach other sites. One participant mentioned: “Google’s just a way to get there” [FG #1]. Another participant expanded on this view, adding “I agree. I am not putting my trust in Google; I am only putting my trust that Google is going to give me a variety. My trust is actually embedded only in the searches I click, it is just the outlet to get me there, it is just the bridge” [FG #1].
Once Google supplied a list of relevant sites to visit, most participants reported visiting many sites in order to satisfy their searching demands. This technique allows participants to “shop around and have multiple sources” without having to use exact phrasing [FG #1]. The information shopping process described by participants often included multiple side-by-side comparisons. One participant mentioned: “Because you can multiple open window task bars and tabs on the Web browser, I open every single one on the first page in each of the task bars and compare all of them” [FG #2].
This technique facilitated the information shopping experience and gives greater confidence in results because “you get as much information as you can if [all the websites] have the same information” [FG #2]. Many participants used the tabs function of Web browsers to compare multiple websites at once.
Participants described a common sequence of events that led to the termination of the search process. As the comparing and filtering process of multiple websites progresses, participants reported that eventually “all the information is basically the same” [FG #1]. Although another participant acknowledged that “there are always additional links to go to” [FG #1], other participants explained that once results became irrelevant to their original search query it was time to stop the search process. One participant explained: “If you go down to the 17th, 20th, 30th option under Google, you find that what you are looking for is the 30th degree of separation. It is just not as relevant to what it is you are trying to research anymore” [FG #1].
Some participants also reported a sense of being “lost” or “completely forgetting where you started”, especially in cases of performing broad searches. The resulting confusion can lead to becoming “unmotivated” to continue searching, even if the original query has not been resolved [FG #1].
In addition to information saturation, subjective fatigue was an indicator participants described as a reason for ending the search process. After a long, drawn-out search process, participants reported getting “tired with the screens” and feeling “exhausted” [FG #1]. Another participant compared the process to shopping: “If you know what you want, you can go to ten different places to try to find that one thing, but after a while…you are going to be hitting your head against the wall…it gets exhausting” [FG #1].
Ultimately, the participants described searching for health-related information as a rigorous process of comparing and contrasting various sources against personalized criteria based on need and individual appraisal of reputation. This filtering process generally continues until the results become repetitive and/or the searcher becomes fatigued.
Major search engines can easily produce thousands of results for any given query. How then do patients and consumers select which websites to gather health-related information? Although every search is unique, participants overwhelmingly preferred sites based on two main factors: reputation and advertising (or lack thereof).
Participants often commented that they “tend to go for the sites that are most reputable” [FG #1]. While the importance of reputation applied to all websites, regardless if they were related to health, participants also reported placing a higher standard of quality on health-related information. As one participant explained, “Health is unlike any other consumer type of website…I take it to a totally different level. I want to have the best, you only have one body” [FG #1]. Making sure they had “the best” gave participants comfort in knowing they were receiving accurate information. Often “the best” is synonymous with dealing with a “reputable institution”, which is in turn largely influenced by branding. One participant explained: “When you are dealing with a company, an organization that has a good reputation, then you feel more confident that you are getting the right information” [FG #3].
In addition to pure name recognition, participants reported that institutions “earn trust…through publications, research, and education” [FG #2]. Additionally, “how [websites or institutions] are ranked” or if they are “well known” contributed to participants’ conception of reputation [FG #2]. Finally, participants were more likely to view sources of health information as reputable if they were domestic. As one participant explained, “I would rely more heavily on those [domestic] institutions than a foreign hospital that may be quite good but is somewhere outside of the United States” [FG #2].
While reputation played a major role in determining which websites to trust for our participants, advertising and commercial interests often dissuaded them. Almost all of our participants reported avoiding websites that had visible advertising or were obviously profit-oriented. As one participant explained, “If I see ads, I question the motivation for providing information that they have” [FG #1]. Another participant explained the aversion in the context of a wider trend of commercialization of medicine: “I think for me it scares me how, and I suppose this could go onto a variety of different things, but it scares me how medicine has transformed into such a consumer-driven place” [FG #1].
Most of our participants shared distaste for commercial interests in their searching behavior; however, in some cases it had more to do with the perception of profit-driven motivations rather than the true nature of the business or organization. In response to a question regarding whether or not participants thought that MayoClinic.com, the commercial consumer health information portal owned and maintained by Mayo Clinic, was a “commercial” website, one participant responded, “Well, you don’t see a lot of advertising on the Mayo site…I don’t see a lot going on the sides all the way down the page flashing at me, I don’t have a lot of popups that come at me” [FG #1].
Although Mayo Clinic does indeed utilize advertising on the website, the combined name recognition, familiarity, and subtle nature of advertisements was enough to retain credibility for many of our participants. We acknowledge that there might be an inherent bias in this finding since the study participants were either Mayo Clinic patients, employees, or at least have one family member at home who is a patient or employee.
Our goal in collecting these qualitative data was to better understand how consumers use and search for health information on the Internet to inform the development of more personalized health information searching and delivery applications. The participants in this study described a common experience of searching for health information that largely mirrors recent large-scale survey data. Most of our participants see the Internet as a potentially valuable tool to find information about health and medical conditions; yet, they did point to the challenge of efficiently addressing their particular needs given the vast amounts of information. This reflects the challenge of streamlining and personalizing information for a user base that is diverse both in terms of individual background and need. The data presented here, particularly in the context of content preferences and searching techniques, may be beneficial to researchers and content providers as they develop new strategies for delivering health information.
Many participants shared examples of how they use information they found through Internet searches in their efforts to enhance their interactions with their health care providers. Examining these data in the context of increasing health costs and physician time constraints provides valuable insight into the challenges and opportunities consumers and physicians will encounter in years ahead. Many of our participants reported using Internet health searching as a means of enhancing clinic visits, either through preparation or post-appointment follow-up. Some concerns exist regarding how doctors may react to patients introducing health information gathered from the Internet into the exam room, and indeed previous research has indicated that some physicians view such occurrences negatively [, ]. Patients, on the other hand, tend to view Internet health searching as an additional resource to complement the still highly valued patient/physician relationship [ , ]. Our data also support this view of the patient perspective, as our participants viewed online health searching as a means to “build the doctor-patient relationship” [FG #2]. How physicians respond likely depends on physician communication skills and whether or not the physician feels challenged [ ]. The participant experiences and opinions described here are largely from a patient perspective and are largely positive in the context of using health information from the Internet to enhance visits. These perspectives may be useful in framing future research focused on physician perspectives on using such information in office visits.
Recently, the amount of time doctors spend in front of patients has received attention in the media [, ]. Having patients armed with information and questions prior to office visits may help improve care in the current realities of decreased face time with doctors, which today can be as low as 8 minutes on average [ ]. This of course necessitates that the information patients gather be of high quality. Indeed, research suggests the quality of information that patients present ultimately determines its effect on the patient/physician relationship; while accurate information can be helpful, inaccurate information may be harmful [ ]. Our future work will therefore focus on ways to develop consumer health information technology solutions to facilitate the transmission of accurate, trustworthy, validated information to consumers to ensure that online health information searching enhances, rather than hinders, care.
This study contained a few important limitations. Due to recruitment constraints, our study population was limited to adults within Olmsted County, MN. All participants were either employees or were family members of employees and patients at Mayo Clinic, where the study took place. Additionally, our sample was highly educated, with all participants having attained at least a community college degree, and 68% having completed graduate school. We were therefore unable to explore the perspectives of a more diverse population. It is also important to consider our choice of study design when interpreting the data we presented. In this study, we used qualitative approaches such as grounded theory and focus groups method for data collection and analysis. These qualitative methods allow us to contextualize participants’ understandings and experiences, to track variations in how concepts are understood, and to uncover novel findings that may warrant further investigation . In this way, we are able to make, as Giacomini and Cook describe, an “empirically-based contribution to ongoing dialogue” [ ]. The overarching goal of qualitative research is to explore and describe particularities of a social phenomenon rather than producing generalizable results. But, findings from a small sample size in a qualitative research can help developing hypothesis for a quantitative study to produce generalizable findings from a larger sample size. Our study participants were recruited from a limited subset of individuals that was readily accessible in a community dominated by the health care industry. In doing so, our goal is not to present data that can or should be generalized to a wider population, but rather to explore pertinent issues with a level of depth that is not possible with standard quantitative (and generalizable) methodologies. Indeed, we cannot claim that the experiences described here are representative of all Internet users; however, they can inform the development of future work and research in areas of streamlining content delivery and patient/physician interaction.
We conducted this qualitative study to gain a deeper understanding of search behavior in order to inform future technological developments in personalizing online information searching and content delivery. Although the Internet was a preferred source of health information for almost all of our participants, from a consumer and patient perspective challenges persist in streamlining the process of identifying reliable and high quality content that also matches the intended search target of the user. Our participants described a current search paradigm consisting of drawn-out user-driven comparisons of content obtained from multiple sources of varying quality and unverified validity. As consumers continue to use information gathered from the Internet to enhance their interactions with health care providers, new strategies for delivering health information on the Internet must be developed that accommodate diverse backgrounds and clinical needs.
The authors would like to acknowledge Thomas Suther for providing access to the Mayo Clinic digital usability laboratory where one of the focus groups was conducted. This project was supported by the Mayo Clinic and by Grant Number UL1 TR000135 from the National Center for Advancing Translational Sciences (NCATS).
Conflicts of Interest
- Fox S. Pew Internet American Life Project report. 2013. Pew Internet: Health
URL: http://www.pewinternet.org/fact-sheets/health-fact-sheet/ [accessed 2014-02-21]
- Gutierrez N, Kindratt TB, Pagels P, Foster B, Gimpel NE. Health literacy, health information seeking behaviors and internet use among patients attending a private and public clinic in the same geographic area. J Community Health 2014 Feb;39(1):83-89. [CrossRef] [Medline]
- Chaudhuri S, Le T, White C, Thompson H, Demiris G. Examining health information-seeking behaviors of older adults. Comput Inform Nurs 2013 Nov;31(11):547-553 [FREE Full text] [CrossRef] [Medline]
- Cutilli CC. Seeking health information: what sources do your patients use? Orthop Nurs 2010;29(3):214-219. [CrossRef] [Medline]
- Higgins O, Barry MM, Dmegan C. A literature review on health information seeking behaviour on the web: a health consumer and health professional perspective. European Centre for Disease Control 2011 Oct:1-16 [FREE Full text] [WebCite Cache]
- Lorence DP, Park H, Fox S. Assessing health consumerism on the Web: a demographic profile of information-seeking behaviors. J Med Syst 2006 Aug;30(4):251-258. [Medline]
- Drentea P, Goldner M, Cotten S, Hale T. The association among gender, computer use and online health searching, and mental health. Information, Communication Society 2008 Jun;11(4):509-525. [CrossRef]
- Flynn KE, Smith MA, Freese J. When do older adults turn to the internet for health information? Findings from the Wisconsin Longitudinal Study. J Gen Intern Med 2006 Dec;21(12):1295-1301 [FREE Full text] [CrossRef] [Medline]
- Atkinson NL, Saperstein SL, Pleis J. Using the internet for health-related activities: findings from a national probability sample. J Med Internet Res 2009;11(1):e4 [FREE Full text] [CrossRef] [Medline]
- Wangberg SC, Andreassen HK, Prokosch HU, Santana SM, Sorensen T, Chronaki CE. Relations between Internet use, socio-economic status (SES), social support and subjective health. Health Promot Int 2008;23(1):70-77. [CrossRef]
- Kummervold PE, Chronaki CE, Lausen B, Prokosch HU, Rasmussen J, Santana S, et al. eHealth trends in Europe 2005-2007: a population-based survey. J Med Internet Res 2008;10(4):e42 [FREE Full text] [CrossRef] [Medline]
- Knapp C, Madden V, Wang H, Sloyer P, Shenkman E. Internet use and eHealth literacy of low-income parents whose children have special health care needs. J Med Internet Res 2011;13(3):e75 [FREE Full text] [CrossRef] [Medline]
- Choi NG, Dinitto DM. The digital divide among low-income homebound older adults: Internet use patterns, eHealth literacy, and attitudes toward computer/Internet use. J Med Internet Res 2013;15(5):e93 [FREE Full text] [CrossRef] [Medline]
- Jadhav A, Andrews D, Fiksdal A, Kumbamu A, McCormick JB, Misitano A, et al. Comparative analysis of online health queries originating from personal computers and smart devices on a consumer health information portal. J Med Internet Res 2014;16(7):e160 [FREE Full text] [CrossRef] [Medline]
- Sadasivam RS, Kinney RL, Lemon SC, Shimada SL, Allison JJ, Houston TK. Internet health information seeking is a team sport: analysis of the Pew Internet Survey. Int J Med Inform 2013 Mar;82(3):193-200. [CrossRef] [Medline]
- Smith CA. Nursery, gutter, or anatomy class? Obscene expression in consumer health. 2009 Presented at: AMIA Annual Symposium; 2007; Chicago, Illinois p. 676-680.
- Keselman A, Smith CA, Divita G, Kim H, Browne AC, Leroy G, et al. Consumer health concepts that do not map to the UMLS: where do they fit? J Am Med Inform Assoc 2008;15(4):496-505 [FREE Full text] [CrossRef] [Medline]
- Zielstorff RD. Controlled vocabularies for consumer health. J Biomed Inform 2003;36(4-5):326-333 [FREE Full text] [Medline]
- Seedorff M, Peterson KJ, Nelsen LA, Cocos C, McCormick JB, Chute CG, et al. Incorporating expert terminology and disease risk factors into consumer health vocabularies. 2013 Presented at: Pacific Symposium on Biocomputing; 2013; Kohala Coast, Hawaii p. 421-432
URL: http://psb.stanford.edu/psb-online/proceedings/psb13/abstracts/2013_p421.html [WebCite Cache]
- Koch-Weser S, Bradshaw YS, Gualtieri L, Gallagher SS. The Internet as a health information source: findings from the 2007 Health Information National Trends Survey and implications for health communication. J Health Commun 2010;15 Suppl 3:279-293. [CrossRef] [Medline]
- Corbin JM, Strauss AL. Basics of qualitative research: techniques and procedures for developing grounded theory. Los Angeles, California: Sage Publications, Inc; 2008:1-379.
- Hamann J, Mendel R, Bühner M, Kissling W, Cohen R, Knipfer E, et al. How should patients behave to facilitate shared decision making–the doctors’ view. Health Expect 2012 Dec;15(4):360-366. [CrossRef] [Medline]
- Ahmad F, Hudak PL, Bercovitz K, Hollenberg E, Levinson W. Are physicians ready for patients with Internet-based health information? J Med Internet Res 2006;8(3):e22 [FREE Full text] [CrossRef] [Medline]
- Kivits J. Informed patients and the internet: a mediated context for consultations with health professionals. J Health Psychol 2006 Mar;11(2):269-282. [CrossRef] [Medline]
- Stevenson FA, Kerr C, Murray E, Nazareth I. Information from the Internet and the doctor-patient relationship: the patient perspective–a qualitative study. BMC Fam Pract 2007;8:47 [FREE Full text] [CrossRef] [Medline]
- Murray E, Lo B, Pollack L. The impact of health information on the internet on the physician-patient relationship: patient perceptions. Arch Intern Med 2003;163(14):1727-1734. [CrossRef] [Medline]
- Chen PW. For New Doctors, 8 Minutes Per Patient. 2013.
URL: http://well.blogs.nytimes.com/2013/05/30/for-new-doctors-8-minutes-per-patient/?_php=true_type=blogs_r=1 [accessed 2014-09-15]
- Block L, Habicht R, Wu AW, Desai SV, Wang K, Silva KN, et al. In the wake of the 2003 and 2011 duty hours regulations, how do internal medicine interns spend their time? J Gen Intern Med 2013 Aug;28(8):1042-1047 [FREE Full text] [CrossRef] [Medline]
- Murray E, Lo B, Pollack L, Donelan K, Catania J, Lee K, et al. The impact of health information on the Internet on health care and the physician-patient relationship: national U.S. survey among 1.050 U.S. physicians. J Med Internet Res 2003;5(3):e17 [FREE Full text] [CrossRef] [Medline]
- Hull S, Taylor H, Kass N. Qualitative Methods. In: Sugarman J, Sulmasy DP, editors. Methods in Medical Ethics. Washington, DC: Georgetown University Press; 2001:146-168.
- Giacomini M, Cook DJ. Users’ guides to the medical literature: XXIII. Qualitative research in health care B. What are the results and how do they help me care for my patients? Evidence-Based Medicine Working Group. JAMA 2000 Jul 26;284(4):478-482. [Medline]
Edited by G Eysenbach; submitted 17.03.14; peer-reviewed by M Conway, S Koch-Weser; comments to author 17.04.14; revised version received 17.06.14; accepted 10.07.14; published 07.10.14
©Alexander S Fiksdal, Ashok Kumbamu, Ashutosh S Jadhav, Cristian Cocos, Laurie A Nelsen, Jyotishman Pathak, Jennifer B McCormick. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 07.10.2014.
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