Patients Go Online Seeking Support, Practical Advice on Health Conditions

Patients, especially those with chronic illnesses, are turning to peers on the Internet for information on everyday health issues and for support. But the majority continue to rely on health professionals for diagnoses, drug information, and recommendations about health care professionals or facilities, according to a survey by the Pew Internet & American Life Project and the California HealthCare Foundation.

Over the past decade, the Pew Internet & American Life Project has conducted a series of surveys about ways people in the United States use the Internet, including as a means to find health-related information. According to Susannah Fox, associate director of the project, three-quarters of US residents have Internet access, and 80% of those with access go online for health information. But the latest survey (http://tinyurl.com/4jtdvwc) provides more detailed information on what kinds of health information individuals are seeking online and what they continue to seek from traditional sources.

The results are based on a national telephone survey of 3001 US adults, which had a response rate of 13.6% for the landline sample and 17% response rate for the cellular phone sample. In addition to the telephone survey, Pew also conducted an online survey of 2156 members of the National Organization for Rare Disorders to gather narrative information about members' use of the Internet for health-related purposes.

The results of the telephone survey should help allay the concern among some health professionals that individuals may use the Internet to self-diagnose and treat. In fact, according to the telephone survey, 91% of individuals report turning to a health care professional when they are seeking a diagnosis, 85% report seeking drug information from their clinician, 63% ask their clinician for information on alternative treatments, and 62% turn to their clinician for referrals to other health care professionals or facilities.

“A lot of people have asked, ‘Is the Internet replacing health professionals?’ and the overwhelming answer from the American public is ‘no,’” she said.

Dominick L. Frosch, PhD, associate staff scientist at the Research Institute of the Palo Alto Medical Foundation and assistant professor of medicine at University of California, Los Angeles, who was not involved in the survey, said the results should be reassuring. He noted that some degree of self-diagnosis has always occurred and will continue; in the past, however, patients may have sought answers in books instead of online.

Frosch said it is important for physicians to understand why patients may seek answers elsewhere. For example, patients may lack insurance or may be anxious about a health problem and want to understand it. “The Internet is available all the time; a physician may not always be,” he said.

Many individuals report seeking other types of health information from nonprofessionals. For example, 59% report turning to friends, family, or fellow patients for emotional support compared with just 30% who seek such support from a health care professional, and 51% report seeking peer advice on remedies for “everyday” health issues vs 41% who seek professional advice.

Individuals were split on whether to seek advice on managing day-to-day health-related issues from peers or a professional (46% vs 43%). For example, Fox said, one patient with a spinal cord injury who participated in the online survey reported seeking advice from other patients about how to arrange her pillows to get a better night's sleep. A mother of an infant with a rare disease reported that while she relies on her child's specialists for medical information, she turns to other parents for practical advice on how to deal with such issues as feeding. “The tips and tricks you might get from another parent might be different than those you get from a physician or nurse,” Fox said.

In many ways such peer-to-peer support and advice seeking is nothing new, both Fox and Frosch agreed. Patients have long turned to individuals in their social circles for advice, but the Internet has created new tools and opportunities and has shifted many such conversations online. For example, Fox explained, the Internet allows patients seeking advice to widen their network by connecting with other patients across the country and it enables patients to reach out to one another at any time of day or night.

“It can unhook the conversation from time and space,” she said.

Individuals with chronic diseases, especially rare diseases, seem to be taking advantage of such broad online peer-to-peer networks. One-quarter of individuals with high blood pressure, diabetes, cardiovascular or pulmonary diseases, cancer, or another chronic illness report seeking other patients online compared with only 15% of individuals without a chronic condition. Individuals with less common diseases were even more likely to seek out others with their conditions, with 32% of them reaching out to other patients online.

Frosch said it is understandable that patients with chronic diseases would use such online networks for support because much of their care is self-care. Additionally, physicians have less time to spend with each patient, and more ground to cover in each visit, so they may not have as much time to offer these patients emotional or practical support, he said.

Fox said online networks can be especially important for patients with rare diseases, who once would have had to travel to meet other patients or spend hours in libraries trying to track down scientific articles. In addition, these networks provide patients and families affected by rare diseases a forum to share the expertise they have developed. She noted that one patient from the online survey has had a rare disease in her family for more than 100 years, and now she is able to share her insights with other families.

“It is not just that people have access to information; they can share what they know,” Fox said. “That's revolutionary.”

Access to first-hand accounts from other patients living with the same condition may also help patients take a more active and informed role in decision making, Frosch said. He explained that such accounts may help patients envision what it would be like to live with the consequences of various treatment options. “I think that is what a lot of people are looking for,” he said.

But Frosch cautioned that such peer-to-peer networks may also help to spread harmful or inaccurate information. “It multiplies opportunities for good or negative things to happen,” he said.

Fox said she hoped the survey results would advance the conversation about how patients are using the Internet to access health information past the “fear factor.”

“Health professionals' advice is central to most Americans,” she said. “The Internet plays a supplemental role.”