Surveys show time is ripe to deliver on health-related Internet-based tools
By: Linda Perrett
It’s a major initiative of the President’s Council of Advisors on Science and Technology: empower Americans to take charge of their own health through utilization of online technology and tools. Over a decade ago, however, researchers at NCI became concerned that access to this type of online health information was not being met, particularly as it related to prevention and treatment of cancer. To measure and assess this problem, they launched a surveillance tool, the Health Information National Trends Survey, or HINTS.
As of August 2012, there have been four HINTS reports surveying a total of over 23,000 adults. The evolution of HINTS data has shown how Americans use tools, such as the Internet, to acquire medical information for themselves and their families. Findings from HINTS have caused a dramatic change in the way agencies such as NCI and numerous others approach cancer-related communications.
“In previous decades we relied primarily on one-way, broadcast media to get our messages across,” said Bradford W. Hesse, Ph.D., chief of the Health Communications and Informatics Research Branch in NCI’s Behavioral Research Program and director of the HINTS survey. “Now, we look at tools that support two-way communications and shared decision making. At the same time, we have learned, first hand, about the challenges of the information age.”
As early as 2003 HINTS investigators noted important changes in the health information environment when they asked how many people were looking for cancer information and where they would go first to find these data. Results from that year showed a significant number—half of all people surveyed—had looked for cancer information from any source. About 40 percent said they would first go to their physician, while 42 percent said they would first go online. But when asked where they actually went for cancer information, only 11 percent first went to their doctor, while 49 percent first went online for cancer data. These findings demonstrated how important “Dr. Google” was becoming for patients as a first source for cancer-related information, Hesse commented.
In 2005, the investigators noted that the Food and Drug Administration was on track to approve Gardasil as a vaccine to protect against the strains of human papillomavirus (HPV) that cause most cervical cancers. The survey fielded questions, in HINTS 2005 and again in HINTS 2007-2008, to track awareness of HPV and the vaccine—and to understand what barriers might exist for broad adoption of vaccine use. The 2005 data showed that about 39 percent of women without a history of cervical cancer knew about HPV, but by 2008 that number had jumped to almost 77 percent. HINTS 2012 tracked knowledge, attitudes, and behaviors related to use of the vaccine that informed a report of the President’s Cancer Panel.
In addition, HINTS 2012 shows that the public expects health systems, such as doctors’ offices, hospitals, and clinics, to maintain their health information in a sharable, electronic format. For example, 94 percent of American adults believe it is very important or somewhat important that their health care providers have the ability to share health information with other providers electronically. Those who thought this very important increased to 64 percent in 2012, from 49 percent in 2008. HINTS investigators are working with the Office of the National Coordinator for Health Information Technology at the Department of Health and Human Services to strengthen and improve the usability of cancer-related information tools, including personal health records, so patients can be further engaged in their own care.
“What we have uncovered through HINTS has helped to steer the national dialogue on health communication,” said Hesse. For example, HINTS has demonstrated what happens when patients encounter a morass of recommendations about cancer prevention, or controversies in early detection, and then struggle to make sense of conflicting signals. Data have shown that confusion about prevention recommendations has increased, over the past decade, as patients get lost in a type of “data smog” within this new environment. To combat this problem, the HINTS team has worked closely with the Centers for Disease Control and Prevention and the American Cancer Society to hone, and coordinate, cancer related messages.
In addition to being a survey vehicle, HINTS also functions as a research program database that generates a series of HINTS Data Briefs for communication practitioners. These briefs cover a variety of topics of interest to the cancer control community—from prevention to survivorship (hints.cancer.gov/briefs.aspx). This information is also available to the public.
“The public has already been enmeshed in a world fueled by online banking and ATMs, e-commerce, e-tickets, mobile entertainment, and on-demand information through Google and Wikipedia,” said Hesse. “HINTS data show that the time is ripe to deliver on the public’s expectations for Internet-based tools to lead healthier lives, as well. We are at work to achieve this goal.”
To this end, HINTS analyses have become a connecting point for scientists and public health practitioners, both nationally and internationally. In one initiative, the HINTS results are being translated to data that informs Healthy People 2020, a Department of Health and Human Services program used to develop health communication strategies and technologies that improve health outcomes, and health care quality, of Americans (www.health.gov/communication/healthypeople/Default.asp).
In another initiative, HINTS investigators are working with the Ministry of Health in the People’s Republic of China as it engages in an expansive effort to track the progress of China’s health communication goals. In July 2012, the CDC pointed to collaborations of this type as an important part of the future in public health surveillance.
It all comes down to empowering Americans to take charge of their health. “As former Surgeon General David Satcher said, ‘In public health, surveillance is where public health begins.’ There is no doubt that we are enmeshed in a communication revolution, understanding how we can turn this extraordinary opportunity into real health benefits and that is what the HINTS program is about. It is the compass by which we at NCI are guiding our cancer control efforts,” said Hesse.