Searching for Health Information Online: An Exploratory Study

1. Searching for Health Information Online: An Exploratory Study Jason Howell, Andrea Melnikas, Qian Gao, Shing Lai Cheng, Stan Kachnowski Healthcare Innovation & Technology Lab New York, NY

2. Introduction A growing number of people search for health information on the Internet, independent of the traditional brick and mortar medical system. About 80 percent of Americans have searched for at least one health-related topic1 on the Internet using the more than 70,000 websites that provide this information2. Approximately 23 percent of those using the web for a major health issue felt that the web played an important role in their assessment of this issue3. This is specifically due to the perception that the web provides convenient access to reliable information about health3. Physicians have noted an increase in patient knowledge and expectation about their healthcare due to the convenient access to health information on the web5. As a result, health consumers who were previously passive receivers of medical and health information are now becoming more active consumers6. This development has triggered new research relating to e-patient search behaviors as well as providing challenging opportunities for system developers.

3. Introduction Searching for consumer health information online is still difficult for the average person. The quantity of health information on the web is voluminous and it requires no special skill or expertise to create. Those accessing that information also have varying backgrounds that affect their ability to comprehend the information provided, adequately for that information. Additionally, their actual mental and physical needs vary greatly. Therefore, building a better online health information system requires a holistic understanding of how e-health consumers interact with the web and the content the content that they find.

4. Methodology Thirty participants were recruited from the greater New York City area for an individual session. Each participant received one of two disease-based case studies (one well-known, one obscure) and was asked to search online for specific information about the disease. Website access was not restricted or directed by the study staff. Search behaviors were recorded using software that captured screen images, websites visited, and keywords searched. A post-search questionnaire was completed to analyze aspects of participant background and thought process. The recordings and questionnaire were reviewed and the data was coded for analysis. We sought to develop an understanding of search methodology and efficiency based on a review of individual searches. We speculated that sites visited, time spent on sites, and the interest in academic articles and clinical trials would illuminate this information.

5. RESULTS • Top Sites • NIH sponsored (PubMed, Medline, NIAMS, and others) (70%) • Wikipedia (53%) • WebMD (36%) • MayoClinic (33%). • Top Search Engines: • Google was the most utilized search engine (73%) • Yahoo, Altavista and MSN were also used. We compared users by education and income levels and found that there were no significant differences in the average number of pages visited, or first page accessed. We found anecdotal evidence suggesting that users with the obscure disease condition were more apt to rely on search engines, instead of going directly to a known site. This may perhaps be due to a need to determine the disease definition. Our data did not suggest that subjects with higher education are more efficient at searching for health information or find better quality sites, but the data does suggest that higher income subjects may be more efficient.

6. RESULTS Figure 1. Quality Ratings by 30 Users

7. RESULTS Figure 2. Trust Ratings by 30 Users

8. RESULTS Table 1: Top sites by their collective traffic

9. RESULTS Table 2: Top sites (by time) for each user

10. RESULTS Table 3: First Site entered by each user

11. RESULTS We compared participants by education and income levels and were surprised to find no significant differences in the average number of pages visited or first page accessed. Subjects with a graduate degree or higher (n=9) did not differ from those with lower education (n=21) on total pages browsed (p=0.6), time spent on first non-search engine (p=0.4) or number of discrete pages within preferred website (p=0.9). The lack of significance may be due to limited sample size. This study serves as model for a larger project that will further examine education and income levels in online health search behavior.

12. CONCLUSIONS • There do not appear to be significant differences in the number of pages accessed or first page between subjects of high or low income levels, or education levels. This may be due to a small sample size, or our sampling strategy. Data on efficiency of search across education and income levels were inconclusive. We believe, however, that these differences do exist and we plan to conduct a similar study with a larger subject pool to examine these differences and whether they contribute to health disparities. A better understanding of internet search behaviors and how these searches differ due to education or income levels is important and may help to address disparities in access to health information online. • E-patients split site quality into two separate parameters, 1) site design and 2) quality of information. Participants were looking for readily available and detailed information, statistics, and links to other resources and scholarly articles. Ease of use, navigation, and locating information were also extremely important.

13. CONCLUSIONS • Based on a review of the questionnaires, insights were collected regarding participant perceptions of the search process. With respect trustworthiness of the Internet sites, participants considered a variety of aspects influential. They felt that participants felt that the reputation of the sponsoring organization was extremely important. Websites that were affiliated with well-known institutions, or those with a high level of checks and balances and that are known for their expert academic and scientific knowledge, such as research hospitals and government sponsored sites, were more highly regarded. Also, e-patients tended to trusted .org sites or sites without advertisements more than their paid counterparts. Site design also seemed to play a role in the level of trust by study participants. • Desired Content Layout: • Readily accessible frequently asked questions (FAQ) section • Categorization of symptoms, causes, disease course, and treatment • Detailed description of procedures (sketches useful) • Verification system to demonstrate reliability

14. CONCLUSIONS • Desired Web Navigation: • Links to relevant clinical trials • Internal search engine within site • Communicate/Connect with others with disease • Elements of site content that users were specifically looking for during their search process include: • Comparisons of treatment, which option is best for specific population types • Success/survival rates, recovery times, risk factors • Current resources that questioned standard procedure in the addressing of patient quality of life and survival, obtaining second opinions • Description and links to doctors/specialists with profiles and contact info (pictures requested)

15. CONCLUSIONS • Study subjects struggled to find readily-available answers to difficult questions. Few, especially those without specific background in internet research, were able to readily access a list of expert physicians or hospitals with a specific background in the disease. Several participants expressed interest in a forums for discussion of the diseases with clinicians and others suffering with the disease, but struggled to find them. Study participants were also interested in finding a Q&A section on their particular disease as most seemed to complete the study with many questions they were unable to answer. • While reviewing the data capture software, data showed that one participant had spent the entire 30 minutes on WebMD, perhaps skewing the medium time spent data on the site. Also, it was clear that some participants were unfamiliar with searching information online and entered breast cancer terms in the default Shopzilla internal search engine. Though the demographics of the study participants were fairly evenly spread, they were relatively more educated than the general population: 30% with graduate level degrees, 50% bachelors degrees, 6% associates degrees,13% had some college education.

16. CONCLUSIONS Limitations and Future Research • The study has several important limitations. First, we observed a small number of participants in a somewhat artificial environment. We cannot rule out the possibility that participants may have felt time pressure and thus put less emphasis on checking the quality and source. We tried to minimize this by explicitly instructing them to take their time and try to retrieve the correct answer rather than a quick answer. Second, as answering finding valuable information did not have any direct impact on the participants, individuals with a greater stake in the search outcome might focus more on information quality and actively look for markers of quality. Third, we do not know to what degree the sample was representative, but, given the location and recruitment methods, likely had relatively experienced study population. • Future study will prove useful in helping understand the specific search processes in greater detail and will yield additional information regarding the mental process that subjects undergo during searching. One such study might include the use of the similar study model followed by a voice recorded review, with the subject of the visual images of their search while asking them to explain the thought process behind their search methodologies.

17. REFERENCES 1. Boase J, et al. The strength of Internet ties: the Internet and email aid users in maintaining their social networks and provide pathways to help when people face big decisions. Pew Internet and American Life Project. 2. Grandinetti D A. Doctors and the web: help your patients surf the net safely. Medical Economics 2000; April; 28–34. 3. Anderson J G. Consumers of e-health: patterns of use and barriers. Soc. Sci. Comp. Rev. 2004; 22 (2); 242–8. 4. Klein J D, Wilson K M. Delivering quality care: adolescents’ discussion of health risks with their providers. Journal of Adolescent Health 2002; 30 (3); 190–5. 5. Jadad A R, et al. Internet use among physicians, nurses, and their patients. Journal of the American Medical Association 2001; 286; 1451–2. 6. Anderson J G, Eysenbach G, Rainey M R. The impact of cyberhealthcare on the physician–patient relationship. JMS 2002; 27; 67–84. This study was underwritten by Pfizer Inc.