Surfing the Transplant Web
Just today I had a patient I wanted to start on a new drug, and he was very anxious,” says Gabriel Danovitch, MD, medical director for the Kidney and Pancreas Transplant Program at the University of California, Los Angeles. “He had looked up the drug on the Internet and said people commented that it was awful.” While physicians may cringe at the variability of information on the Web, patients increasingly turn to the Internet for medical help. According to a study by the Pew Research Center, 51% of adults younger than 65 have used the Internet to look up health information in the past 12 months.1 Furthermore, a study by the National Cancer Institute found that while most doctors want to hear from patients about the research they’re doing online, patients surfing the Web say they don't always talk to a doctor about what they find.2
Throw into the mix the tremendous growth in social media, another source of potentially dangerous misinformation on the Internet. "As a community, we have to keep up with the way people are communicating with each other,” says Dr. Danovitch, adding that he's a technophobe when it comes to the new social media.
As much as physicians might moan and groan, the reality is that the way people seek information and communicate with each other includes traditional websites as well as new social media. "We need to get up to speed and communicate with our patients in the manner that is best for them,” Dr. Danovitch comments, recommending that perhaps the next American Transplant Congress include an informational session on social media or a booth in the exhibit hall where attendees can try out the various methods of social media, as well as take a look at the plethora of transplant websites (see “Online Resources for Transplant Patients and Donors,” next page).
Social Media—Another Side of the Web
The exact number of hospitals and health systems that use social media is unknown. Ed Bennett, director of Web strategy at the University of Maryland Medical Center in Baltimore, manages a site that monitors hospital social networks and provides links to hospital policies for social media. As of October, he had heard from 830 hospitals (out of approximately 5,000 large, mid-size and small hospitals nationwide) that had formal social media policies.
Bennett breaks down the number of hospitals in each state that participate in social media, as well as the type each one uses. Two coastal examples: In California 53 hospitals use social media and of these, 31 are on YouTube, 43 have Face-book pages, 40 use Twitter, 23 are LinkedIn members and six blog. In South Carolina 19 hospitals use social media: seven are on YouTube, 17 have Facebook pages, 15 use Twitter, six are on LinkedIn and three blog. (For the entire list, see http://ebennett.org/hsnl.)
Should transplant professionals be aware of social media and how to use it?“This is how people are sharing and trading information,” says Bennett. “If clinical people are not in that conversation in some way, then the good scientific information may not be there. I think physicians can link people to reliable information without stepping over professional boundaries.” The Mayo Clinic is one health system that has enthusiastically embraced the dissemination of online information and the use of social media. The Mayo Clinic Center for Social Media was formally created in July, but the organization has been podcasting physician video interviews since 2005. Lee Aase, the social media program director, says the Mayo website receives 30,000 hits daily, their YouTube videos have well in excess of 5,000 views, and they have 85,000 Twitter followers and about 28,000 Facebook fans.
Aase suggests that physicians increase their awareness of social media. “It's not a substitute for office visits,” he says. “It's more about sharing valuable patient information. These are powerful tools for both information and a two-way exchange.” Physicians might do a great service by steering patients toward reliable content. “Start by telling your patient ‘I know you want to research this, it's very natural. I know you want to talk with other people. When you go on the Internet, here are places I trust where you can start,’” he advises.
- • Patients increasingly turn to the Internet for medical help, and don't always talk to their physicians about what they find.
- • Social media can be a powerful tool for sharing patient information and communication.
- • Physicians should steer patients to reliable websites and resources, and be ready to discuss what the patients research.
Online Resources for Transplant Patients and Donors
- • American Society of Transplant Surgeons (ASTS) Patient Education (http://asts.org/researcheducation/patienteducation.aspx)
- • American Society of Transplantation (AST) Patient Education (http://a-s-t.org/index2.cfm?Section=patients)
- • American Transplant Foundation (http://www.americantransplantfoundation.org)
- • Healthy Donor (http://www.healthy-donor.com)
- • Healthy Transplant (http://www.healthytransplant.com)
- • National Foundation for Transplants (http://www.transplants.org)
- • National Institutes for Health Organ Donation (http://nlm.nih.gov/medlineplus/organdonation.html)
- • National Transplant Assistance Foundation (http://www.ntafund.org)
- • Transplant Awareness (http://www.transplantawareness.com)
- • Transplant Buddies (http://www.transplantbuddies.org)
- • Transplant Cafe (http://www.transplantcafe.com)
- • Transplant Living, from the United Network for Organ Sharing (UNOS) (http://www.transplantliving.org)
- • Transplant Recipients International Organization (http://www.trioweb.org)
- • TransWeb (http://www.transweb.org)
- • UNOS (http://www.unos.org)
See also disease- and organ-specific association sites such as the National Kidney Foundation, the American Liver Foundation, the American Heart Association and the American Lung Association.
Don't Forget Transplant Tourism
The World Health Organization's Francis Delmonico, MD, suggests that physicians warn patients about the hazards, lack of regulation and questionable legality of purchasing organs overseas, which are often advertised online. (A free, downloadable brochure titled “Thinking of Buying a Kidney: Stop” is available at http://www.decla-rationofistanbul.org.) Additionally, physicians might want to read the Canadian Society of Transplantation's website (http://www.cst-trans-plant.ca) for a copy of their “Policy Statement on Organ Trafficking and Transplant Tourism,” which includes information about how physicians can talk with their patients about this topic.
In the general area of transplantation and the Internet, Dr. Delmonico notes that variability and misinformation are most certainly out there, but “we don't have the wherewithal to constantly monitor … the Internet in a responsible way.” At the same time, physicians need to be ready when patients have questions about what they have seen online and how they are corresponding with others via social networking.