July 2011: Volume 37, Number 7
A Decade of Lab Tests Online
What Are Millions of Users Searching For?
By Bill Malone
This year hospitals and physicians begin marching into the age of electronic health records under a new paradigm of information sharing and patient access, chasing government financial incentives now coming into effect. However, it looks like patients are already one step ahead. An estimated 80% of Web users now search online for health information, or about 59% of all adults in the U.S. Already one in four Internet users have tracked some aspect of their health online and 16% report looking online for information about medical test results, according to a new report from the Pew Internet & American Life Project, “The Social Life of Health Information, 2011.”
When it comes to patient-oriented information about lab testing, Lab Tests Online, AACC’s public resource on clinical lab testing, has represented the lab community for 10 years, evolving to meet the needs of 2 million visitors a month (www.labtestsonline.org). The Pew report underscores just how important sites like Lab Tests Online can be at a time when patients increasingly receive direct electronic access to their lab results. With more online access to personal records like lab tests, health information sites will act as intermediaries that help patients cope with all this new data, said Susannah Fox, an associate director at the Pew Internet & American Life Project and author of the recent report.
“There is a critical role for the Internet to fill in the gap of understanding that we all know exists between the moment that a health professional gives information to someone and how that person deals with that information,” she said. “As healthcare providers rush to implement electronic health records and patients get greater access, this is going to be an important opportunity for better patient education and communication.”
The New Health Information Seekers
Even though health professionals remain the primary source of information when people need an accurate medical diagnosis or have other serious health concerns, Pew survey data from the past decade consistently show that people use online sources as a significant supplement to their interactions with healthcare professionals. Young college graduates with higher-than-average household income still search online the most, but significant numbers of other groups are emerging as active users as well (See Health Information Seekers Box, below).
Health Information Seekers
According to the Pew Internet & American Life Project’s recent report, “The Social Life of Health Information, 2011,” 80% of Internet users have gone online for health information. That is almost 60% of all adults in the U.S.
Overall, 16% of all Internet users in the telephone survey say they’ve searched online for information about medical test results. While much of the demographics are similar to those searching for other types of health information, certain groups are more likely than others to search for test information.
Source: Fox, Susannah. The Social Life of Health Information, 2011. Pew Internet & American Life Project, May 12, 2011, available online.
The Internet has fundamentally changed Americans’ relationships to information, Fox said. “One of the first changes that we saw really broadly was with the advent of high speed Internet access. We found that broadband users are more likely to turn to the Internet first when they have a question, whether it’s a question about the weather, what movie is playing, or a new medical diagnosis—an important qualitative difference,” she said. “There is something about the always-on access that makes people think of the Internet as a first-line information resource far more often than before.”
Mobile access, along with social media, is the third wave in this trend, especially among younger demographic groups. In Fox’s report, about a third of those age 18–29 reported using a cell phone to look for health information, compared to 15% overall. “With mobile, now it’s the always-on, always-with-you access, and that is changing us as Internet users,” Fox said. “We have been able to see in many sectors, including health, what we call the mobile difference. That means that people are not only more likely to look for information online if they have a mobile device, but they are more likely to share it.” In the Pew survey, 34% of Internet users said they had read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog, and 18% seek out others online who share similar health concerns.
Compared to other types of websites, social networking sites like Facebook and MySpace are still not yet widely used for health information searches. But with the notably higher use of mobile searches among the young, health information seeking on social networking sites is likely to increase. “Now that they have these devices with them that are like Swiss army knives of participation, what’s really neat is that in healthcare, we are tapping into an ancient instinct to share,” Fox commented. “People have always gotten together to talk about their health, to talk with loved ones about what they’re facing, or to share with people who might have a similar diagnosis. But now we can widen our networks and speed up those conversations, and that’s the difference that the Internet makes.”
Another notable trend revealed in the Pew survey is that many people searching for health information are caregivers. Almost half of Internet users seeking health information report that their most recent search was for another person, and overall, 70% of all adults in the U.S. caring for a loved one have looked online for health information. This is a significant number, considering that one in four adults provides unpaid care for a friend or family member.
Specifically for medical test information, the Pew survey found that those who are caregivers, have recently experienced a medical crisis, or have a chronic condition, are more likely to search for lab-related information online (See Health Information Seekers Box, above).
The Quality Conundrum
Even a decade ago, when most Internet users still depended on slow, dial-up connections and blogging and social networks were in their infancy, people already had strong doubts about the quality of health information that was finding its way onto the Web. This is one of the reasons that AACC and other collaborating lab organizations felt so strongly about creating a site like Lab Tests Online. Pew found in a 2006 survey that only one in four Internet users always look for the source and date of health information online. However, the vast majority of websites do not display such information, Fox noted. “I think you can forgive consumers for giving up searching for a needle in a haystack,” she said. “If they’re expected to look for the source and date of health information, then it’s up to the websites to display that.”
The results paint a bleak picture. Not one of the 102 sites in the sample, which did not include Lab Tests Online, met all six of the criteria. And though 90% complied with at least one, only 3% complied with more than three. More concerning, 10% complied with none. The report also noted that there was a lack of consistency in how or where websites disclosed information.
While concerns about the quality of health information online seem to be justified, Fox suggested a more nuanced perspective. For instance, even the most highly respected sites that meet criteria like disclosing a source and date, such as those from the government, are not often the first choice of the average Internet user. In fact, only 6% of adults were even aware of the Hospital Compare Tool created by the Centers for Medicare and Medicaid Services.
There are several reasons for this, according to Fox. “For better or for worse, Internet users by and large are not going to sites like PubMed [the National Library of Medicine’s online citation database of biomedical literature],” she said. “People have questions that are about all the aspects of health that surround the diagnosis—like what to expect and how they fit into the universe of people going through the same illness. So it’s not a rejection of going to see the doctor: it’s actually that they continue to embrace that, but they want to augment what they’re learning from health professionals.”
The Lab’s Voice in Cyberspace
Since it’s inception in 2001, AACC and other stakeholders intended Lab Tests Online to fill the apparent information gap online for the public and garner visibility and esteem for the practice of lab medicine at the same time. The site’s rapid climb in visitors and the hundreds of thousands of questions answered by lab volunteers demonstrate the real public demand for high-quality lab-related information. The site has also maintained its original commitment to rigorous peer review, usability, and a non-commercial viewpoint, even as 17 other countries have developed localized versions in 14 languages (See Lab Tests Online Box, below). Lab Tests Online has earned numerous awards for content and reliability, as well as praise from national news media such as the Washington Post, U.S. News and World Report, and Prevention magazine.
Lab Tests Online Celebrates 10 Years
In the past 5 years alone, the number of visitors to Lab Tests Online has tripled, a testament to the quality of the site and the high demand for online health information. The U.S. site was launched in July 2001, and had had 1 million visitors by the next year. Visitors to the site soared to 25 million in 2006, and hit another milestone, 100 million, in February, 2011.
This month, the site launches an app for mobile devices in the iTunes store and Android market. Once downloaded, the app will not require an Internet connection to be used. An Internet connection will only be needed to obtain content updates.
Growth of the U.S. Site
Increasing Global Visibility
Lab Tests Online is now available in 17 countries and 14 languages. The first non-U.S. site was launched in the UK in 2004. Just 3 years later, Spain, Germany, Poland, Australia, Hungary, and Italy launched localized sites. Currently, Greece, Czech Republic, China, France, Portugal, Brazil, and Turkey also have sites up and running, with two more—Korea and Romania—expected to launch soon.
Total Non-U.S. Site Visitors
Because of the hurried and fragmented care they often receive, patients need a site like Lab Tests Online, emphasized Elisa Passiment, CLS, executive vice president of American Society for Clinical Laboratory Science (ASCLS) and a member of the site’s editorial board. “There are so many benefits to us as laboratorians offering this kind of information to our patient-customers,” she said. “It is always interesting to me how concerned people are about their health status, yet how little they seem to understand about that status, even though they’re under a physician’s care. It’s not because the physician is not doing his or her job, it’s because there is just not enough time to explain everything in the depth that people need. So Lab Tests Online is the next round of education and understanding for people, and we as laboratorians can tell them much more about what lab tests mean than anyone else that they encounter.”
The Internet has not only changed our relationship to information, but also the patient-physician relationship, noted Murilo Melo, MD, PhD, editor of the Brazilian Lab Tests Online site that was launched in 2010. “Patients are taking more control of their health and it is now customary to perform an Internet search before and after a medical visit. Physicians are still trying to adapt to this new reality,” he said. “What is disturbing to most physicians is that since patients often get most of their information on sites that have poor quality content, they must spend extra time educating them. Lab Tests Online-Brazil aims to help both patients and physicians by providing reliable content that empowers patients while directing them to the most important aspects of each lab test.” Melo is associate professor of molecular medicine at Santa Casa Medical School in São Paulo and vice-scientific director of the Brazilian Society for Clinical Pathology and Laboratory Medicine (SBPC/ML).
The need for a trustworthy source of lab test information can also be seen in how Lab Tests Online has evolved over the past decade, Passiment commented. “When we first started out, we thought that it was going to be pretty basic information, written only for the consumer, just to give people an appreciation of what laboratory testing was all about,” she said. “We have now realized that there are many kinds of patients and caregivers that are using the site. So we are way past just the routine tests. We always keep in mind that we’re helping a broad spectrum of caregivers and healthcare professionals, so we’re incredibly careful that everything is totally clear and accurate.”
User Comments Demonstrate a Broad Spectrum of Site Visitors
Lab Tests Online invites user comments.
Here is a sampling.
My wife and I are RN’s. Your site is, excuse the pun, “bloody good.” Thanks so much.
This site is excellent. It explained my laboratory blood work results. Once you understand what the medical terms—like B-U-N, W-B-C, and NEUTROPHILS—are, mentally it clears up worries as to what the test results mean and eliminates unnecessary stress. Thank you so much for this site.
Excellent site! Information is clear, concise and helps you research further if needed. I work in healthcare as a phlebotomist and I have found this site to help me and my patients more than anything else. Thank you.
My doctor ordered many tests and I did not know what they were all for. Reading your descriptions made me feel secure and gave me a clue about what the doctor was looking for or trying to rule out. Now he seems pretty smart!
Thank you for providing such comprehensive and excellent information in lay terms. It has helped me better understand my—and my elderly parents’—health conditions as well as all our lab tests results.
This site has been a wonderful help to me in understanding my health status and my doctor’s thinking. It has helped me to be a more responsible and active partner in the maintenance of my health and treatment. Thanks.
It is Friday afternoon and I received test results that I did not understand. I won’t see my doctor until Monday afternoon. The information on this site helped ease my anxieties about the results. It was easy to understand and relevant to my needs.
I am very glad to have stumbled upon this site. It is so much more easily searchable for clinical lab tests than others. It is also more helpful getting to the succinct facts about your test, your results versus normal, and potential things that can affect the results. I appreciate the public service mission of this site.
Quite a useful reference when I need a reminder about the differences and uses of specific lab tests. Thanks.
I am a lab director and I LOVE this site.
This site was VERY helpful. My husband has cancer and the doctor gave us a print-out of all his blood tests and a graph showing low, high and where his results were. I found the tests on your site and was able to understand what the doctor was testing for.
The balancing act between technically complete content and the clarity patients need takes the most time and effort, said another long-time editorial board member, Patrick St. Louis, PhD, laboratory director at Clearstone Central Laboratorie in Mississauga, Ontario. “In terms of content, it comes back to our target audience,” he said. “It’s a mixture of ordinary patients and professionals as well as people like ourselves. So we need something understandable to the guy next door who may be a laborer, an engineer, or a lawyer, or then someone who is a physician or a lab professional. The content must be sufficiently technical but also readable.”
Now that Lab Tests Online has developed so many international sites, with more on the way, its staff and editors face new challenges that highlight the variety of ways lab testing is utilized around the world. “Initially, we looked at this primarily as an effort to translate the site, but in fact what we’re discovering is that international sites must be adapted in other ways,” said
D. Robert Dufour, MD, executive editor of Lab Tests Online. “Once you develop content, it can’t just be left static. You have to constantly review it and bring it up-to-date, whether it’s new guidelines, new evidence, or new ways of using the test. We spend in the U.S. about 80 percent of our time, not creating new content, but reviewing the existing content. So this we see as the challenge for our international colleagues, where they generally do not have as large an editorial team.” Dufour is emeritus professor of pathology at George Washington University Medical Center, and a consultant in pathology and hepatology at the Veterans Affairs Medical Center in Washington, D.C.
As the site continues to expand and refine content to keep up with new methods, guidelines, and patient needs, there will be opportunities for more volunteers to contribute, Dufour emphasized. Lab experts are needed to answer the questions that visitors to the site submit, a responsibility that ASCLS until recently has managed, but now includes AACC members as well. “It’s important to note that this is a huge effort. We have hundreds of people all over the world who are participating in this, both in developing and adapting content, answering the questions, and this is something that could not have happened without the efforts of all of these volunteers, many of whom have devoted years and years to working on this project,” Dufour said. “It also could not have happened without the support of the professional societies who recruit those volunteers, or without the support of the companies who give financial support, or AACC that continues to produce the site.”