Few would argue that the Internet has revolutionized how people communicate, shop, invest their money, obtain information, and even socialize. “In the past 20 years, it has become a relatively pervasive part of everyday life,” declared Steve Case, creator of the Web site Revolution Health.
Healthcare now stands at the threshold as the next target area of seismic changes from the Internet. “Five years ago, 63 million people a year went online for health information. In 2007, it was 116 million people,” revealed Nan-Kirsten Forte, Executive Vice President of Consumer Services at WebMD. This great ability to move massive amounts of healthcare information to more and more consumers has become a double-edged sword, bringing both benefits and challenges to the delivery of quality healthcare.
To explore the issues surrounding the role and growing use of the Internet for healthcare information, the National Comprehensive Cancer Network (NCCN) assembled a distinguished panel representing some of the many voices in this complex scenario, including physicians, patients, and Web developers and publishers. Among the questions that generated lively debate at the opening roundtable of the NCCN’s 13th Annual Conference were: What is the best way to dispel confusion for patients while improving their health literacy? How will the shifting art of medicine affect the physician-patient relationship? How can the healthcare industry empower patients to take a more active and effective role in their own healthcare? What is the best way for patients and providers to access patients’ healthcare information? And, how can accurate health information be provided and found on the Web?
Although the perspectives of the panel were as diverse as the panel itself, the consensus was that, ready or not, the delivery of healthcare is undergoing a metamorphosis, with patients becoming more active in their healthcare and medical information and treatment becoming more personalized.
The Internet can be a great tool, but consumers are overwhelmed by the massive amount of information available, according to James Mault, MD, FACS, of Microsoft’s Health Solutions Group. “Search engines are not doing the job for people,” he explained. Ms. Nancy Davenport-Ennis, founder and director of the National Patient Advocate Foundation, agreed. “Consumers are looking for very practical information, and they’d like to find one-stop shopping,” she commented, “and right now, that is difficult to find. You’re going to need to go to more than one location.”
Also adding to patients’ possible confusion over reliable healthcare information is the problem of poor health literacy. Defined as the degree to which individuals can obtain, process, and understand the basic health information and the services needed to make appropriate health decisions, health literacy also includes the ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, and directions from physicians. According to an Institute of Medicine study, “only 12% of the American people have proficient health literacy,” said Ms. Penelope Slade Royall, director of the Office of Disease Prevention and Health Promotion. Educational efforts are crucial, she added, because “it doesn’t matter how much we know; if we can’t communicate it, it doesn’t matter.” As we move toward consumer-centric healthcare, she continued, health literacy is a huge concern.
“One of the problems is that cancer is not a sound bite,” argued Al B. Benson III, MD, of the Robert H. Lurie Comprehensive Cancer Center. “It is a complex collection of diseases with very complex biology. And it’s impossible for a lay population to fully grasp all of those nuances.”
Another issue is that, with the rapid advances in cancer research as well as the plethora of newer treatment options, experts cannot always agree on most effective treatments for different types of cancers. This process can be seen in the NCCN guidelines themselves, Dr. Benson noted. For instance, for some treatments, high-level evidence behind a recommendation and consensus among experts about its inclusion in the guidelines warrant a category 1 ranking. However, other therapies are designated as category 2B or 3 recommendations because there is lower-level or less evidence, and, therefore, a nonuniform level of consensus or major disagreement, respectively. “Throughout medicine, there are endless examples where we don’t have [a] category 1 level of evidence. What we have is consensus and the variable opinions,“ Dr. Benson explained.
“Let’s face it, if we put 10 doctors in a room, we will come out with 11 medical opinions,” Ms. Forte quipped. Different trusted sources can have different perspectives, echoed Dr. Mault, and the question becomes how physicians can interpret the available information effectively for their patients.
One result of the wealth of health information available on the Internet has been giving patients a stronger voice in their own medical care. “We’re just scratching the surface in terms of leveraging the Internet to empower consumers to take more responsibility,” stated Mr. Case. “My diagnosis is that part of the reason we have a healthcare system that is hard for consumers to understand and navigate,” Mr. Case said, “is because consumers have all too often abdicated the responsibility for healthcare because somebody else was paying for it.” Ms. Davenport-Ennis added that “we’re at the front side of moving consumers away from the passive role in the healthcare experience to a more self-directed role.”
According to Mr. Case, consumers have been conditioned to look to their employers and their health plans for direct guidance in terms of benefits. Through this process, “they have been engineered to feel that they are second in line in making some of these decisions,” he added. The take-home message for Mr. Case is that “consumers need to be part of the solution.” Through the Internet, patients can be given simpler language to learn about their treatment options. “They just need better tools to make better choices,” he concluded.
As individuals are becoming more proactive in their own treatment decisions, it should be natural for them also to focus their attention on maintaining a healthy lifestyle. “Prevention is the name of the game,” declared Ms. Royall. Respected Web sites may become not only a source of information for a specific problem but also a place to go “more frequently to try to live a healthier life,” Mr. Case predicted. “The missing ingredient here is getting people to take action; not just learn about something, but do something,” he continued.
Most of the panel agreed, however, that the Internet cannot and should not take the place of good patient-physician communication.
“Healthcare today is still living in the 1960s and the 1970s of technology,” Dr. Mault asserted. Patients once played a passive role in their interactions with physicians, but they are now arriving at their appointments armed with information, some of which may be accurate and some of which may be inappropriate or misleading.
This shift highlights a possible new role of the Internet, as a vehicle for raising important discussion points between physicians and their patients, according to many members of the panel. In essence, the Internet can provide a framework in which patients can think about their disease and the issues they face, Dr. Benson said. Then, when they bring this information to their physicians, “it can enhance the discussion.” This approach, however, will change the dynamics of the physician-patient relationship, he admitted, as physicians separate the fact from the fiction.
The role of physicians, particularly when treating patients with chronic diseases, is a constant one of re-education, according to Dr. Benson. “This is not just a one-time encounter; it’s a continuum of information,” he stated. The hope is that the Internet will help to support that continuum, “providing more information and building on these interactions” between physicians and patients. Any source of information, including the Internet, should help patients to get the most from their physician visit, declared Ms. Forte. “The single, most important thing [for patients] is working with their doctor,” she added.
Individualizing cancer treatments through the discovery of the human genome has revolutionized the treatment of cancer. One of the critical goals in oncology, Dr. Benson commented, is to understand human tumor biology to the extent that “when we see an individual patient, our treatment strategy is individualized for that molecular pathway.” Similarly, information obtained from the Internet can become more personalized for patients, enabling them to engage in a more productive dialogue with their physicians.
Furthermore, the questions of who controls and to how best access a person’s healthcare information were at the center of the panel’s discussion. In the past, physicians stored a patient’s clinic notes in a file cabinet, and the patient did not have easy access to them. With healthcare joining the Internet age, individuals need to be put at the center of their health information, Dr. Mault emphasized. Both Ms. Forte and Dr. Mault referred to the importance of “the democratization of health information.”
For individuals to be the keeper of their own health data, according to Dr. Mault, they have to have a sole location for all of their personal health information, including data from physicians, hospitals, health plans, laboratories, and pharmacies. “Today healthcare is so fragmented that one doctor has no idea what the other one is doing,” he said. New Internet tools and Web sites are beginning to make it possible to aggregate and store a person’s healthcare information, much like his or her financial data. Within the next 10 years, Dr. Mault predicted, consumers will be able to match up educational content via the Internet with their genomic, symptomatic, laboratory, and medication information.
The future is now regarding the portability and interoperability of data, reported Dr. Mault. “That is the start and finish of taking healthcare into the Internet age.” It is not solely about having access to voluminous information but, rather, merging it with a personalized “health folder.” “Once you are able to have that [information] all in one place, you can see here are the medications you’re on, here are the allergies, here are the things that your doctors are doing, and then proactively say this is the best plan for you, according to the National Institutes of Health, Web sites, and your doctor,” Dr. Mault explained. “The more we personalize the information, the more relevant it is to [patients],” Ms. Forte concurred. Finally, it is critical for such a personalized health record to be symbiotic with the electronic health records being used by physicians, according to Ms. Davenport-Ennis.
Clearly, “the Internet has opened the door to incredible sources of information that have not been available in the past,” said Dr. Benson. It has completely revolutionized the way in which people obtain information and how much data can be researched. When patients go to the Internet for medical support, they are looking for “simple, immediate, direct access to information that is very scientifically complex,” stated Ms. Davenport-Ennis. They want an easy-to-understand description of their disease, as well as the risks, benefits, and side effects of proposed treatments. Perhaps even more important, cancer patients in particular want to know whether treatment for their disease will allow them to continue to work and take care of their families, she added.
To assess the accuracy of Web pages dedicated to breast cancer, physician researchers at two University of Texas institutions in Houston conducted an extended analysis, said Sam Donaldson, the 37-year ABC News veteran and moderator of the roundtable. The researchers discovered that although most breast cancer data found online were accurate, 1 in 20 breast cancer Web pages featured inaccuracies.
So how does a layperson discover accurate information on the Web, asked Mr. Donaldson? The panel agreed that consumers should direct their search for information to reliable, trusted sources. Many reputable cancer centers and organizations provide patient information via their own Web sites. Other ways to verify the accuracy of information on a site are to check the date of the material and to note the inclusion of privacy seals, added Ms. Forte.
One source of valuable medical information is the Federal government. Government-managed Web sites maintained by the National Cancer Institute and Library of Medicine, such as Healthfinder.gov, may be difficult to locate online because they are not marketed sites, and therefore do not appear at the top of a search list, said Ms. Royall. However, they are reliable vehicles for relevant, understandable medical information. “For information to be listed on Healthfinder,” she explained, “we go through a pretty good screening process before we link to any site.”
With healthcare costs estimated to double by 2017, “our healthcare system is headed for a disaster of biblical proportions,” predicted Dr. Mault, “and technology is one of our only saving graces.” Bringing heathcare into the Internet age may make it possible to implement measures and systems that can provide for early detection and intervention, avoid crisis management, and keep people out of the hospital and living longer, he concluded.