Testimony to the White House Commission on Complementary and Alternative Medicine Policy

By Lee Rainie, Director
Pew Internet & American Life Project

March 26, 2001

Good afternoon. 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 surveys of Internet users, one of them specifically focused on those who seek health information on the Web. We released those findings in November in a report entitled “The Online Health Care Revolution: How the Web helps Americans take better care of themselves.” I have submitted a copy of that report for the record.

Our work on health care pertains to the activities and attitudes of Internet users, rather than to analyzing online health content, so I will focus my remarks on how users” experiences and expectations are relevant to your work. You will find that my comments add up to an encouragement that you consider Internet users as a distinct contributor on e-health issues.

Almost 60 million American adults, or 57% of those with Internet access, have used the Web to get health or medical information. More than 6 million adults are getting such information on an average day. We call them “health seekers” and a majority of them go online at least once a month for health information. We have just come out of the field with a survey of teenagers and found that more than a quarter of children between ages 12 and 17 have consulted Web sources for health, fitness, and dieting information. (It”s something girls do much more than boys, I should point out.)

The reason for all this activity is simple: 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 or the illnesses suffered by someone they love. In an era when many are not satisfied with the availability of 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 shared decision-making.

Perhaps the most important thing to know is that 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 many cases, they feel they are getting more information about illness, prognosis, and treatment options from Internet sources than they are from medical professionals. Yet, 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. This suggests that you would be making a vital contribution by fostering reliable guides to the best information.

Too often, health seekers are stumbling around cyberspace unaided. Fully 81% of health seekers told us they found the information they wanted through an Internet search, rather than through a search assisted by knowledgeable helpers. And 64% of health seekers say they had never before heard about the Web sites they ended up consulting. 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 and 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.”

Dr. Tom Ferguson, the senior fellow for health research at my Pew Internet Project, argues that the places on the Internet where the most powerful searching and learning occurs are not necessarily health sites, but the disease-specific online communities and the disease-specific sites run by patients with condition X for other patients (and family members) of those with condition X. Within these forums, discussion of alternative and complementary approaches is most common for diseases in which conventional care has the least to offer and/or in which cultural mismatches between providers and patients make it harder for patients to get the kind of care they would like to get.

While opinions that many health professionals would probably label as “inaccurate” or “misinformed” are occasionally posted, (not as often as you might think because support group communities are impressively “expert” places), they almost never go unchallenged or uncorrected. In many cases differences of opinion boil down not into “right” and “wrong,” but rather differing biases for a particular type of or approach to treatment. For instance, some end-users consider themselves “anti-drug and pro-natural” and consider most health professionals to be unconsciously “pro-drug” and “anti-natural.” Thus by their lights they would prefer to begin with “natural” remedies and use “drug” remedies only as a last resort.

This suggests that efforts to encourage users to contribute to the assessment of online information would be a useful addition to the efforts that are being made by providers to establish ethical and quality standards for online health sites. Dr. Ferguson has done research suggesting that well-mediated and robust disease-support communities can often provide online health seekers more in-depth information, more details about cost-effective treatments, more emotional support, and more practical information about coping activities than professional health providers can. Of course, patients continue to say that doctors are better than support groups at diagnosing illness and setting up illness management regimes.

The other Internet sources for information quality assessment are the so-called qualityware search engines like google.com and consumer-oriented sites exemplified by gomez.com and epinions.com. The health-site report cards and ratings compiled by the staff and site users are a powerful resource for those asking fundamental questions: What are the best sites for my condition?

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 it.

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. This concern about privacy extends to the idea of online medical records: 63% of health seekers say 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.

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 and learn how to take steps to protect their privacy. 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 personal opinion 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 also drop considerably if real penalties put in place for privacy breaches.

Our surveys suggest consumers and patients would appreciate this from you:

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. There is abundant evidence, too, that patients would love more opportunities for email interaction with their providers as well as the capacity to perform other online transactions with their providers such as appointment scheduling, prescription refills, and lab test reports.

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) Facilitate methods for patients to apply their own expertise to online health matters. Internet-based support groups can play a very constructive role in providing advice to others about what web sites to visit, how to assess the validity of online information, and how to deal with illnesses. Their emergence online is one of the most important developments in health care. They embody the best open-source features of the Internet and the best kind of online communities.

It”s not always easy for visitors to just “drop in” on online support groups. First, they are rather like ongoing dinner parties and sometimes construct protective defenses against casual browsers. The technologies that support them also sometimes require cumbersome signup protocols, and passwords. Second, once you do “get in,” it sometimes takes time to learn the peculiarities of the technical interface and/or the culture protocols and “netiquette” of each individual group.

Nonetheless, there are some easy and convenient ways of checking out postings on some of the online support groups. Here are a few starting places:

(1) Observers can check out the back issues of the ALS Digest (a support group for Amyotrophic Lateral Sclerosis — Lou Gehrig”s disease) at: http://www.alslinks.com/alsdigestarchives.htm

(2) CancerHelp provides a gateway to a number of different cancer-related support groups: http://cancerhelp.8m.com/

(3) To find a link to a support group on a specific topic, go to: http://dmoz.org/Health/Consumer_Support_Groups/

(4) Another way to find a self-help group on a specific topic, log onto www.google.com and do a search for [name of condition] plus “support group.”