Testimony to the National Committee on Vital and Health Statistics Workgroup on National Health Information Infrastructure and the Workgroup on Health Statistics for the 21st Century
By Lee Rainie
Director — Pew Internet & American Life Project
January 11, 2001

Good morning. It is an honor to be here commenting on this critically important initiative of the Department of Health and Human Services. My name is Lee Rainie and I am the Director of the Pew Internet & American Life Project, a research organization fully funded by the Pew Charitable Trusts to do nonpartisan analysis of the social impact of the Internet. One of the major goals of the project is to assess the way Americans are using the Internet to get health information. Towards that end, the project has done several phone surveys of Internet users, one of them specifically focused on those who seek health information on the Web, and released its findings in November in a report entitled “The Online Health Care Revolution: How the Web helps Americans take better care of themselves.” I would like to submit a copy of that report for the record.

Since our survey work on health care pertains to individuals, not health care providers, I will focus my remarks on the Personal Health Dimension of the National Health Information Infrastructure. You will find that my comments add up to an encouragement that you consider the Internet as a distinct player in the health-information universe because it is playing a role for patients far beyond what is discussed in the NHII working paper.

Fifty-two million American adults, or 55% of those with Internet access, have used the Web to get health or medical information. We call them “health seekers” and a majority of them go online at least once a month for health information. More adult Americans have used the Internet to get health and medical information than have bought products online, sent or received instant messages, participated in online auctions, performed online banking, or made travel reservations. Half of health seekers say access to information on the Web has improved the way they take care of themselves many report that the material they gather directly affects their decisions about getting care and treatment for their illnesses. Of all the possible impacts of the Internet on people’s social lives, this is the most profound.

In an era when many are not satisfied with the availability of their doctors and not satisfied with the duration of their meetings with their doctors, they are turning to the Web to provide the information they find hard to get from their caregivers. They are also increasingly interested in participating in what the medical community calls “shared decision-making.”

The NHII will be able to build on this foundation. Consumers and patients are already seeing the real benefits of searchable medical databases and will welcome any progress the NHII can make toward providing convenient, reliable, secure access to high-quality information. But Americans are quite anxious about the quality of medical information online and the privacy of information related to their health.

I would like to highlight two major barriers to your vision of NHII: The first is the continuing lack of support for patient empowerment that is gained through health information online. The second is Internet users’ fear of the consequences of their health information falling into the wrong hands.

Health seekers go online in a very action-oriented frame of mind. They are anxious to get information that will help them make important, even at times life and death decisions. In most cases, they feel they are getting more information about illness, prognosis, and treatment options from Internet sources than they are from medical professionals.

Even as they take this information to heart, 86% of health seekers say that they worry about getting health information from an unreliable source online. Compared to other Internet users, health seekers show greater vigilance in checking the source of online information. They are also more likely than other Internet users to consult multiple Web sites in their hunt for this information.

This suggests that your hope to create reliable guides and mechanisms to verify the accuracy and validity of health information would be greeted warmly by health seekers. Too often they are stumbling around cyberspace unaided. According to our study, 81% of health seekers found the information they wanted through an Internet search, rather than through a search assisted by medical professionals. And 64% of health seekers say they had never heard about the Web sites they ended up consulting before they began the search. Since the majority of health seekers went online for information right before or right after a doctor’s visit, there is an opportunity for health-care providers or other trusted intermediaries to supply lists of accurate and patient-friendly sites or guidance on sophisticated search strategies.

Under many circumstances now, patients get the exact opposite message from providers: “You are not helping yourself by getting more information and you are pestering me with all these Web printouts you want me to look at. I don’t want to be bothered.”

Most users go to health sites for research and reference purposes and have been able to get the information they need without making any significant trade-offs by giving up personal information. Only 21% have volunteered their email address to a health Web site. Anonymity – or, at least, the feeling of anonymity – is enormously important to health seekers: 80% say that is one of the major appeals of getting health information on the Internet. A user can hunt for information on a sensitive subject and nobody has to know about that bout with depression or an incontinence problem.

That partly explains why Internet users so strongly fear the prospect of such information falling into others’ hands. A certain amount of shame might be a cause, but there are practical worries, too. Some 85% of health seekers are concerned that their insurance company might change their insurance status or raise rates if the firm finds out what Web sites a health seeker has visited. More than half of health seekers fear their employers might find out what sites an employee has visited and take action.

For many, this anxiety is compounded by the fact that they do not want outsiders misinterpreting their clickstream. We asked respondents at one point in our survey to describe the most recent time they hunted for health information online and 54% said they were looking on behalf of someone else – a spouse, or child, or aging parent, or friend. Thus, they have the extra worry that a “profile” of their surfing might be misread as an indication that they have an illness, rather than the loved one for whom they are actually searching.

Finally, the concern about privacy extends to the idea of online medical records. Some 63% of health seekers and 60% of all Internet users think that putting medical records online is a bad thing, even if the records are on a secure, password-protected site, because they worry about other people seeing their personal information. Among the most sensitive to privacy violations are African-Americans, parents, and Internet newcomers (those who first came online less than six months ago).

Our sense is that this apprehension about medical privacy can be reduced. First, some of it will vanish as more and more people get more online experience. Those who have been online for several years exhibit noticeably less concern about privacy violations, probably because they have not had any problems. Second, even with these expressed concerns about privacy, many Internet users have already shown that when the information-transaction suits them, they are willing to give up personal information in return for access to content that matters to them. My strong hunch is that if a doctor told her patients that creating an online medical record would result in better care, many would swallow their privacy fears and allow the record to be created. Third, many of these worries would dissipate if users were given assurances through anti-discrimination laws that information from their online medical searches could not be used against them on the job, in their insurance status, or in other key aspects of their lives. Concerns would drop considerably if real penalties put in place for privacy breaches.

So consumers welcome news that HIPAA violators will be subject to civil and criminal penalties. But they would also like the right to sue violators themselves. Fully 81% of health seekers think people should be able to sue a health or medical company if it gave away or sold information about its Web site users after saying that it would not.

And it seems that HIPAA will not cover the majority of the nation’s more than 17,000 health-related Web sites. We are working with the Health Privacy Project at Georgeown University in analyzing the HIPAA regulation’s impact and will be issuing a report in a few weeks about that. But preliminary analysis by us suggests that many Web sites do not clearly fall into the three categories of organizations that are covered by the regulations – health care providers, insurance companies, and health data clearinghouses (the organizations that process and transmit insurance-claim data). Many of the most common features of health Web sites will not be covered: health assessments, applications for clinical trials, chat rooms and bulletin boards, and personal management tools such as online disease management and patient-generated “medical records.”

I would start by encouraging you to expand your three-part concept of the NHII to include recognition that health information on the Internet is an important part of the universe of medical information that patients use and that is part of the overall information infrastructure health care issues. Beyond that, here’s what our surveys suggest that consumers and patients would appreciate.

1) Encourage “buy in” from the medical establishment. Patients are going to hunt for medical information online whether their doctors sanction these searches or not. Internet users would like trusted allies to help guide them on these searches and no one should be better qualified to do that than providers.

2) Encourage transparency and patient privacy awareness. One of the reasons privacy fears run high is that Internet users don’t know what is happening: 56% of Internet users don’t know what a cookie is, don’t know how to set the preferences on their browser, and don’t know the basics of tracking and profiling. They would appreciate education and technology tools to give them a better sense that they are in charge of their personal information and that they know what is being done with that information.

3) Encourage a new tilt on the privacy playing field, not just for health care information, but in the broad context of the Internet. Right now, the burden of action in most cases is on users. They are tracked and profiled by Web firms unless they take steps to opt out. They would rather have the presumption of privacy when they go online and the burden of action shifted to the online firms.