The survey was distributed via the website MTurk, a crowdsourcing Internet site devoted to human intelligence tasks [22] that has been used in prior medical informatics studies [23-26] and in the evaluation of consumer health tools [27,28]. The MTurk site was used as it has been demonstrated by those studies as a reliable method to survey a convenience sample and because it provided access to individuals across the country, as opposed to one geographical area. The survey was made available only to those MTurk participants within the United States. The survey was posted on the MTurk website for 3 weeks in May 2015. Participants were invited to complete the survey with the guarantee of compensation of US $1 per completed survey; each participant completed only one survey. The first 500 individuals to fully complete the survey were chosen as a convenience sample for purposes of analysis. We sought 250 participants age 41 and older, and 250 participants age 40 and younger. To do this, the survey was distributed twice, once as a survey available to those who were age 40 and younger, and once as a survey to those who were age 41 and older. Participants were asked to affirm their age cohort.

The majority of participants were white (389/473, 82.2%) (see Table 1). Although accounting for fewer respondents, Asian (26/474, 5.4%) and black (25/473, 5.2%) participants were the second largest group and were roughly equivalent. The majority of participants had some college education, with very few (27/473, 5.7%) participants listing high school as their highest level of educational attainment. Roughly half of respondents reported an annual income of US $35,000 or less. Participants tended to spend over 11 hours a week online (349/473, 73.7%), but most had used a portal 10 times or less (216/473, 45.6%) or had never used a patient portal (174/473, 36.7%). This rate of portal use suggests that responses to the survey are both a measure of needs for those with experience using a portal, and expectations for those who have not used a portal before.

In this study, a convenience cohort of the general public was asked to rate their perceptions of usability and feasibility of patient portals and knowledge of lung cancer, in order to demonstrate the demand for lung cancer knowledge and status of patient portal usability. Overall, we observed that respondents reporting chronic illness tended to have more positive opinions of patient portals and to perform better on lung cancer knowledge questions than those without a chronic condition. Chronically ill patients having a more positive opinion of eHealth is a finding that has also been observed [30,31]. Similarly, a review of literature on portals found that participant interest in patient portals varied by health status [32].

Interestingly, some studies have found that chronically ill patients may have lower health literacy [33,34]. In contrast, a study found that those with a chronic illness reported higher rates of literacy regarding test results [35]. In our work, it may be that the higher performance we observed relates to higher levels of educational attainment, as those respondents reporting chronic illness in our survey more frequently had Associate, Bachelor’s, and Master’s degrees than those reporting no chronic illness (14.6% vs 12.9%, 39.8% vs 36.8%, and 9.7% vs 8.8% respectively).

Having used a portal was associated with significant difference in opinions of patient portals. However, there was no consistent trend observed, with some statements being rated in higher agreement by those who had used portals more and other statements being rated higher by those who had used them less. It is also worth noting that for those who had never used a portal, these statements are measuring expectations of portals, while with those who have used portals, these statements are measuring experience. These results suggest that opinions about the usability of portals do not demonstrate a clear trend whether being drawn based on expectations or experience.

We also found that women reported more positive ratings of portals. While use does not equal preference, positive ratings may be influenced by the higher use of portals we observed in this survey (19.7% of women had used a portal over ten times, compared to 14.3% of men), which is consistent with higher eHealth resource use observed in women [36-38]. We also documented a statistically significant difference in correct responses for lung cancer knowledge stratified by the amount of time spent online. Others have found similar relationships between Internet use and health literacy [34], but our results showed no consistent trend and are inconclusive.

Although two logistic regression models had significant P value results, neither model had strong prediction success. While the low P values (<.05) indicate that the findings are unlikely due to chance, the prediction values, as well as the Nagelkerke R²values, indicate that these models will not perform prediction well. Further research is required to determine predictors that would predict answer cohorts to these questions successfully.

Finally, 33% of participants noted that they were “concerned about unauthorized access,” which was the most commonly chosen option (seem Multimedia Appendix 4 , Question 26). In other work, security was a concern for two thirds of health information consumers, although users of PHRs had less observed concern [39]. The overall percentage of participants concerned with security in this study was less than in [39]. However, a similar trend was observed with 32.5% of those who had used a portal more than 10 times were concerned with unauthorized access while 33.1% of those who had used a portal 10 times or less were concerned. Similarly, security has also been a concern [40]. This common theme suggests that eHealth users may associate eHealth tools with a lack of security. This concern has the potential to impact portal use, as it would likely limit satisfaction and perceived usability and, thus, feasibility.

There are several limitations to this study that may have influenced our results. Most importantly, we used a convenience sample of the first 500 respondents to a survey posted on MTurk. As such, the results derive from Internet users; those with less Internet experience may well have different views regarding patient portals and lung cancer health literacy than those documented here. Our respondents also had higher levels of education than seen in the US population [41], which may have influenced health literacy. Moreover, although we specifically asked respondents not to look up answers to lung cancer questions, we have no guarantee that responses were not informed by additional online queries.

An additional limitation is the potential bias that may be introduced by the use of a digital survey format. Others have found that patients who have used eHealth technology have more positive opinions of it than those who do not [42], suggesting that experience with technology can cause one to regard it more favorably. Here, completing a digital survey on eHealth may bias respondents to rate statements about patient portals more highly.

This work documents a baseline for consumer information needs and health literacy within the domain of lung cancer. Our results suggest that women and those with chronic illness had more positive views of patient portals and that chronically ill patients had higher health literacy in lung cancer. Although chronically ill patients are a likely user group for patient portals, non‒chronically ill patients can also benefit from opportunities to manage and learn about their health as well as mitigate risk via portals. Given this, the results suggest a need for further lung cancer education with opportunities to use patient portals to better educate individuals who do not have a chronic illness about lung cancer. Further study is also needed in order for portals to better address the information needs of patients who are not chronically ill in order to improve perceived usability and feasibility.

This baseline can be used in future comparison studies as well as to inform portal design to improve usability and raise lung cancer health literacy with educational modules. Our future work includes designing a patient portal influenced by these results and then surveying a patient population at UCLA who will have access to the portal, to compare those survey results to this baseline, in order to identify any difference between them.