Clinical Trials and Online Health Information Seeking

Pew Internet released a May 2011 report titled “The Social Life of Health Information,” which has some great data about Americans seeking health information online. Like any respectable research report, this data is presented in a non-opinionated manner, which the reader can approach from a variety of different perspectives.

The purpose of this post is to present Pew’s data from the perspective of online healthcare marketing, particularly with regard to clinical trials patient recruitment. With that lens, I combed through the report and distilled it down to key, actionable insights about the who, what, where, and why of online health information seekers.

Read on for very intriguing revelations (and surprises) about social media, healthcare “trackers,” and the typical search for online health information, among other subjects. These topics will have important practical implications for online healthcare marketing, particularly in the arena of clinical trials recruitment.

Who Searches for Health Information?

Overall, the following demographic groups are most likely to seek health information online: women, non-Hispanic whites, younger adults, and those with more education and income.

Pew notes that two major variables are at play in their demographic data: access to the Internet and interest in health information. It’s important to note that interest in online health information is not sufficient to drive use. Patients must also have access.

The gender disparity of health information seeking is not caused by access but by a difference in interest. On the other hand, the disparity among other groups can be explained by both a lack of access and a lack of interest. The chart below provides a more detailed view of this data:

In addition to basic demographic variables, online health information seeking also correlated strongly with mobile use. For all of the online health-related activities measured by Pew, which we’ll discuss in the next section, wireless users outpaced other Internet users by significant margins. For example, 37% of mobile users read online about others health experiences, while only 24% of other Internet users did so.

What Health-Related Activities Do Searchers Engage In?

Pew’s survey also included information about what health-related activities Internet users are engaging in online. I’m only going to discuss the four activities that are most interesting from a clinical trials perspective, but I urge you to take a look at the full report if you have time.

Looking for Information About Specific Health Topics

Of the 74% of adults who use the Internet, 80% have looked online for information about at least one of 15 topics listed in the chart below. This translates to 59% of all adults. Most notably, 66% of Internet users seek information about a specific medical problem and 56% seek information for a specific treatment.

Unfortunately, Pew did not collect data on clinical trials. The fact that clinical trials are not on Pew’s radar suggests that online information seeking about clinical trials is low, though Pew does not provide us with exact numbers. Due to this lack of popularity, patient recruitment strategy should not be limited to patients explicitly seeking clinical trials information. Disease and treatment-specific targeting, and even interest and demographic targeting, provide a much larger patient recruitment pool.

Pew’s data about online health-related activities can also be valuable for specific types of clinical trials. For example, 17% of Internet users seek information about memory loss, dementia, or Alzheimer’s. If you are conducting Alzheimer’s trials, this insight is not to be ignored.

Reading Other People’s Experiences

Pew also notes that 34% of Internet users have read other people’s commentary or experience about health issues on an online news group, website, or blog. Online consumer behavior, in many ways, is similar to offline consumer behavior. People look to their peers for guidance and information. In this instance, patients seek out the experiences of other patients to guide their healthcare decision-making process.

Research volunteers understand the clinical trials process in a way that the average patient does not. By communicating their experiences and sharing information, current and former volunteers can be a great partner in raising clinical trials awareness. And they have the ability to raise awareness in a way that a study-branded website simply cannot. Though many clinical trials patients enjoy talking about their experience, they won’t necessarily do so without encouragement. And for the most part, they aren’t encouraged.

Pew’s data supports my personal opinion, which is that clinical research professionals need to make a more concerted effort to reach out to current and past research volunteers. And outreach needs to be done outside of the strict and highly structured confines of clinical research processes. In short, we need to work on our relationship skills.

If this topic is of interest, you might enjoy a related post: Rethinking Patient Retention Timelines

Tracking Health Indicators

Of all of the information in Pew’s report, this is one of two pieces data that I found most surprising. Approximately 27% of internet users have tracked their weight, diet, exercise routine or some other health indicators or symptoms online. This figure represents 20% of adults. Though I knew health IT would undoubtedly make online tracking of health data more popular, I did not expect to see a number this high just yet.

I can think of several clinical trials apps, both mobile and online, that allow patients to get clinical trials information. I highly doubt most of these apps are being overloaded with requests. But if you empower patients to take charge of their healthcare through various tools, you will find a much larger and more engaged audience.

Once again, patient recruitment strategies outside of the study-specific clinical trials box are more likely to drive patient interest. Rather than taking the short-term approach to patient recruitment, clinical research professionals must consider ways to provide value to patients.

Watching Online Video

For the first time since Pew started conducting this survey, they collected a data point relating to online video. And they found that 25% of Internet users watched an online video about a health topic. This piece of information has many applications and should certainly be considered as you design websites, landing pages, and other online patient recruitment materials. Online video need not be expensive to produce, so it’s certainly worth adding to your recruitment toolkit.

It is important to recognize, however, that people have vastly different preferences when it comes to how they consume content online. If you provide online video with your online recruitment materials, you should also provide text. Give people options so that they can learn about your study using the medium that they find most desirable.

In addition, the use of text in conjunction with video is better for search engine optimization. Search engines are far more capable of determining the content of text than they are of video, and text will give search engines more to index.

Where Are Searchers Seeking Health Information?

As discussed earlier, approximately 80% of Internet users seek health information online, but the report didn’t fully identify where patients are seeking this information. It did, however, discuss where patients are not seeking online health information, namely social media and mobile phones.

Social Media

Social media sites are used by 62% of Internet users and 46% of all adults. Though social media is quite popular, it is used “only sparingly for health updates and queries.” Since this is an area of interest for many research professionals, I’m going to bring out the block quote so you can look at the specific social media data points.

• 23% of social networking site users have followed their friends’ personal health experiences or updates on the site. This translates to 11% of all adults.
• 17% have used social network sites to remember or memorialize other people who suffered from a certain health condition.
• 15% have gotten any health information on the sites.
• 14% have raised money for or drawn attention to a health-related issue or cause.
• 9% have started or joined a health-related group on a social networking site.

Most of these social media data points relate to other people, whether hearing about their health experiences or offering monetary and emotional support. Only 15% of Internet users got health information from social media sites, which is a small proportion of the 80% of Internet users who seek health information. This data seems to support a point I made in a previous post, Social Media is Not the Answer to Patient Recruitment, stating that social media cannot drive sizable patient interest in clinical trials.

However, social media has slightly more promise for two particular groups, caregivers and those with chronic conditions. For example, 20% of Internet users who are caregivers have gathered health information on a social media site. The same is true of those with chronic health conditions. In contrast, 12% of other Internet users used social media to gather health information.

Because the popular conception of social media is quite fluid and widely variable, I think this topic needed more questions to accurately capture data. Two areas, in particular, warrant additional inquiry. For those who did not get healthcare information via social media, was this the result of a lack of interest or a lack of availability? The distinction between interest and availability is important to determining if the shortage is a result of supply or demand.

And for those who did get health information via social media, was this information acquired through conversations with connections or display ads placed on social media platforms? These mediums are very different, but most respondents will not make the distinction unless asked to do so. Paid advertisements on social media platforms are no different than traditional online display ads. Social media, on the other hand, requires conversation. In short, ads on social media sites are a broadcast medium, while true social media is two-way medium.

Mobile

As previously discussed, mobile phone users are more likely to engage with health information online. However, the vast majority of mobile users are not using their phones to look up this information. Of the 85% of adults who own a cell phone, 17% have used their phone to look up health or medical information. In comparison, 7 in 10 mobile users send/receive text messages and 4 in 10 access the Internet. Mobile certainly has great potential for healthcare applications, but it’s far from mainstream at this point.

Why Do Searchers Look for Health Info?

Not surprisingly, Internet users are more likely to seek health information information online when they have a motivation to do so. Pew identified three groups of health information seekers who fit into this category: caregivers, those suffering from chronic disease, and those with a recent medical emergency.

Certainly, it is not shocking that these groups would be more engaged with online health information. Though this information seems intuitive, it’s important that online health marketers explicitly examine how these roles effect overall campaign strategy.

As you design online patient recruitment materials, think about which of these groups (if any) describe your target audience. Each of the three will have a different perspective and motivation for considering clinical trials, so it important that you communicate in a way that aligns with that perspective. If you are targeting more than one of these groups in a paid advertising campaign, ideally you should have a separate campaign for each.

The Typical Search for Health Information

The very last paragraph of the report contains what I consider to be the most valuable tidbit. “The typical search for health information is on behalf of someone else.” Pew did an excellent job of explaining the significance of this finding:

Half of internet users (48%) who go online for health information say their last search was on behalf of another person, 36% say their last search was on behalf of themselves, and 11% say it was both for themselves and someone else. Thus, while eight in ten internet users go online for health information, the impact of their inquiries may be even broader. And while some groups, such as the chronically ill and those living with disability, are less likely to be online and searching for health information, it does not mean that this information does not reach them through a surrogate of some kind.

As the report points out, patients who do not seek information online may very well be receiving online health information through a surrogate. This means that the reach of online health information is significantly greater than the statistics about online health information seekers would have you believe.

It’s important to note that these surrogates need not be caregivers, nor do patients receiving this information necessarily require a caregiver. In fact, I’d bet that the bulk of these surrogates locate health information on behalf of a patient who is perfectly capable of searching for information online. Surrogates might be family members, friends, or coworkers who are just trying to be helpful.

From a patient recruitment perspective, this finding has significant implications for audience targeting. In my personal experience, caregivers and other patient surrogates have always been a significant driver of clinical trials interest. However, I would not have anticipated that a full half of health information seeking was on behalf of someone else.

Depending on the therapeutic indication, your online recruitment materials may very well reach patients through a surrogate about 50% of the time. For some studies, this number will be larger. The prevalence of surrogates should certainly inform how you approach campaign strategy, including targeting, ads, landing pages, and more. In addition, consider ways to make your online patient recruitment materials easier for these surrogates to share.

Again, this is an excellent report and I highly recommend you read it. I’m sure I’ve missed some important points, so please share your take on Pew’s report in the comments below.