Introduction
Internet users support each other online in two major ways: through online communities and through personal emails. In previous studies, the Pew Internet Project has found that 84% of Internet users have contacted online interest groups of varying sorts, from hobbies to politics to religion.17 Participation in health-related online groups and communities has been steadily rising. In May-June 2001, we found that 36% of Internet users had visited a Web site that provides information or support for people interested in a specific medical condition or personal situation. In September 2002, that number grew to 47% of Internet users, and by December 2002, to 54% of Internet users, or about 63 million Americans.
In addition, about 32 million Americans seek support in a more private form; 30% of email users have sent or received health-related email. About a quarter of email users exchange email with family members about health or medical issues; another quarter do the same with friends. Only 7% exchange emails with doctors or health professionals. Women, better-educated, and more experienced Internet users are more likely to exchange health-related email. Of all those who email about health issues, about 90% find the email useful.
This usefulness and popularity of online support translates into enthusiasm and even passion from e-patients and caregivers for electronic communications. In comments, they describe the value from email and support groups in both emotional and practical terms. A number of themes emerge. On the emotional side, empathy is highly valued; giving support is as important as getting it. On the practical side, support leads to tangible results.
The Internet connects users to emotional support.
Email users value connecting with others who can empathize from their own first-hand experience. One respondent to our online survey wrote, “I have met people on support forums that share my concerns and problems. We can ask questions of each other and have understanding that people without our problems can’t possibly understand.” Another wrote, “The Internet put me in contact with others that KNOW what it was and is like living with a disease that can be disabling with many odd symptoms.” And a mother wrote, “Emailing with other mothers of special needs children has been a great way for me to feel linked with women who know what I’m going through.”
Some respondents to our online survey focus on the less tangible issue of depression. A study published in the December 2002 issue of the American Journal of Psychiatry found that 95% of participants in online support groups for depression said communication with other patients alleviated some depression symptoms.18 As one e-patient confided, “Just when I think my life is horrible, I read someone else’s post and they have it worse…makes me feel better.”
Interestingly, we found that many sought out electronic communications as a way to give as well as receive knowledge. Wrote one, “I am an active participant and information flows both directions. I spend at least an hour a day helping others with their medical concerns.” Another respondent wrote, “As an old timer, I’ll help another MS patient with questions that I might know the answer to.” And another goes out of her way to make herself available, “When I sign guest books and what-not, often times people will email me …almost ALWAYS it’s a parent whose child has hydrocephalus19 and they want to know what their child’s future might hold and what insight I may give them as their child grows up.”
The Internet also connects users to practical help.
Online support sometimes leads to real results: A recent study of 92 overweight or obese adults showed that individuals who received weekly email counseling lost more weight in a year than similar adults who participated in an Internet weight loss program, but did not receive supportive email.20 Those who corresponded via email with weight loss counselors lost 4.8 percent of their original body weight – double the loss experienced by the control group.
The good, practical advice is traded on many fronts. One respondent wrote that she corresponds with her sister, “who knows many chronic pain coping techniques.” “Maybe,” offered another, “(we can) discuss more personally some of the things that we can do to ease some of the symptoms that we have.” One AIDS patient explained, “My online correspondence with friends infected with HIV+/AIDS has given me a basis for comparison, as well as tips for staying healthy.” Another respondent wrote about medications, “Patients undergoing drug trials…can compare notes on the Web (like lab rats communicating with each other by tapping on the bars of their cages).”
Email offers efficiencies; it serves as a purely practical tool within many friends-and-family networks for updating groups of people about a loved one’s health condition or for offering health information. Wrote one respondent, “My father spent 20 days in the ICU for a subarachnoid hemorrhage21 in 2002. I was able to communicate with family and friends on a daily basis by sending one email out to all.” “I’ll send articles or links to sites,” wrote one of many, commenting on how electronic communications lets them share the wealth of information they find.
Internet communications cut through all kinds of physical barriers as well, “I often share info via email with people who do not live in close proximity to me.” And it helps create communities of few, far-flung members. One wrote, “I use email a lot. I will ask questions of …other porphyria patients…They are a wealth of information on a very rare disease.”
Of course, electronic communications isn’t the answer for everyone. Sharing personal medical and health information across the Internet requires a certain leap of faith – or at least a strong sense of privacy and trust. While some e-patients will reach out, using a “patient-matching service”22 to find someone whose situation is like theirs, through sites like the Association of Cancer Online Resources (acor.org) or the Friends’ Health Connection (friendshealthconnection.org); others show concern about writing with online-only correspondents. Wrote one respondent, “I don’t trust people I meet over the Internet enough to give them my email or personal details.” For others, it’s a matter of comfort with the medium. “I can do better in person,” wrote another, in response to a question about whether they use email to discuss health concerns.
“Patient-matching service” – a support network that connects people with similar health problems or personal situations
[Huntington’s Disease]
