Using the Internet to Assist Japan

On March 11, 2011, Japan was struck by a 9.0 magnitude earthquake – the fourth largest in the world since 1900 - proceeded by a massive tsunami. Reports indicate that at least 550,000 people have been displaced, and at least 10,000 have lost their lives. In the hours and days following these disasters, individuals and organizations have utilized the Internet as a “virtual crisis center,” using websites particularly social networking sites, to share information and locate friends and family members.

According to Ezra Gottheil, an analyst at Technology Business Research, “Social communications, like Twitter, and social networking sites, like Facebook, are at their best when big news is breaking.” As seen following the recent earthquakes in Haiti and Chile, humanitarian aid organizations have used social networking websites to solicit donations. Individuals have also used the sites to share information about their experiences on the ground and reconnect with friends and family members. Online Social Media, an organization which tracks social media services, reported that just an hour after the earthquake hit Japan, Twitter was experiencing 1,200 tweets per minute, many of them containing hashtags related to the tragedy. Facebook was similarly flooded with posts, which students in the U.S. and Japan are working together to use to paint a picture of the extent of the tragedy.

Large corporations have also created portals to help individuals locate loved ones and provide information about where to obtain medical assistance, food, potable water, and shelter. Google’s Person Finder database, available in Japanese, English, Korean, Chinese, and Portuguese allows users to enter a name and search for missing persons or post updates about people who they know are safe. A local version of the crisis-mapping tool, Ushahidi, has also been created and put in place. Ushahidi allows individuals in Japan to text or input online the locations of trapped people or clinic locations which are then plotted on a map so that users can easily pinpoint where people may be trapped, dangerous areas that should be avoided, and locations where food and clean water can be obtained.

Patrick Meier, director of crisis mapping and new media at Ushahidi, notes that “Ten percent of this [sharing of information] is the technology, and the other 90 percent is the people…That’s truer and truer as the technology gets easier to use.” As technology use and adoption becomes more widespread, the use of technology during the rescue and recovery period is likely to increase. By utilizing existing information and communication technologies and developing new ones, outcomes following natural disasters can be improved.



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FEMA Online Guide to Disaster Preparedness

Mobile applications that can prepare you for or provide assistance in a disaster situation:

• American Red Cross: Shelter View (iPhone – Free)


• Disaster Readiness (iPhone - $0.99)


• Disaster Readiness (Android - $1.99)


• Pocket First Aid & CPR (iPhone - $3.99)


• Pocket First Aid & CPR (Android - $2.99)


• Emergency Radio (iPhone - $0.99)


• Scanner Radio Pro (Android - $2.99)

Web-Accessibility for People with Disabilities

Though substantial progress has been made to ensure that all individuals with disabilities are afforded the same opportunities as those without, some barriers still remain. While millions of individuals with disabilities currently utilize the Internet to some degree, gaining access to and fully experiencing materials presented on the Internet can be problematic for individuals with certain types of disabilities. Those with motor impairments, low vision or blindness, low hearing or deafness, and/or language or cognitive disabilities often require assistive technologies or devices to access websites. A report from the Disability Statistics Center of the Institute for Health and Aging indicates that at least 2.1 million of the reported 54.4 million Americans with disabilities use the Internet from their homes or on another computer. The American Federation for the Blind states that around 1.5 million of the 7.8 million Americans who experience vision loss use computers, with just under one million reporting regular computer use. Additionally, an estimated 7.8 million people over the age of 15 experience some form of hearing loss, and a report in the American Annals of the Deaf indicates that 63 percent of those who took part in a recent study reported regular computer use. New legislative measures may help to make the web more accessible to any individual with a disability.

The World Wide Web Consortium (W3C) states “not all…disabilities affect access to the Web, but problems with vision, hearing, dexterity and short-term memory can have a significant impact on a person's ability to use online information and services.” Individuals with disabilities frequently employ assistive technologies or make other accommodations to access information online. These may include screen readers, software utilized by individuals with visual impairments which converts information on screen into speech; alternative text (ALT text), HTML tags which provide descriptions of images for blind individuals; and closed captioning, the display of text coinciding with audio content for individuals with low hearing or deafness.

The majority of websites are still primarily inaccessible to individuals with disabilities, and the efforts by others to ensure that they are accessible to people with disabilities have been minimal. A number of “mainstream” websites have instituted accessibility features, including Facebook and YouTube, which have begun implementing changes that will improve the browsing experience of individuals with disabilities. These adaptations include the following:

• Facebook provides an audio captcha alternative to for those using screen readers, as well as an HTML-only version of the website and instructions for increasing font size in a number of web browsers.

• YouTube provides closed captioning options for users with low-hearing or who may not be able to hear or understand the audio portions of videos. However, captions must be added to the video by the individual who uploads it

• Twitter has not yet addressed the issues that prevent its use by many individuals with disabilities. However, AccessibleTwitter offers “a simple, consistent layout and navigation,” “assures that all links are keyboard accessible,” and “uses large default text size and high color contrast.” In addition, the recently introduced service TweetCall allows users to speak their tweets, which are then transcribed to text. For individuals who may have difficulty typing or using a computer, this creates an opportunity for the utilization of Twitter.

To further improve the accessibility of the Internet, Congress recently approved legislation that would set federal standards for the telecommunications industry , including online delivery of information. These new regulations coincide with the 20th anniversary of the Americans With Disabilities Act (ADA), a landmark legislation that helped to ensure equal opportunities and accessibility. Though the ADA has led to vast improvements in many areas, as Representative Edward Markey, D-Mass, noted “The ADA mandated physical ramps into buildings, today, individuals with disabilities need online ramps to the Internet so that they can get to the Web from wherever they happen to be.”

You can evaluate the level of accessibility of a website using the online tool WAVE.

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Using Social Media for Organ Transplantation

Reports indicate that the number of organ donors in the U.S. has decreased in recent years, while the number of patients in need of an organ transplant continues to grow. In 2006, there were 8,019 cadaveric organ donors and 6,732 living donors. Both figures have since decreased, and in 2008 there were only 7,990 cadaveric donors and 6,218 living donors. According to the National Kidney Foundation, 104,748 individuals in the United States are currently awaiting an organ transplant of some type, and more than 4,000 new patients are added to this figure each month. Organs from donors are matched to waiting recipients by a national computer registry called the National Organ Procurement and Transplantation Network (OPTN). In addition, close relatives and family members often undergo testing including tissue matching and blood typing to determine if they are a viable candidate for donation. Many organs, including kidneys, can be transplanted from either living or recently deceased donors, provided they have good kidney function, and low risk for certain disorders including high blood pressure and diabetes.

Transplants using kidneys from both living and cadaver donors are frequently successful, with about 94.9 percent and 97.96 percent of cadaver and living (respectively) donor kidneys still functioning after one year. In spite of the success rate, the wait to receive a transplant, which can often be several years and often requires dialysis and other physically taxing treatments, is too long for some individuals, and a number have chosen to utilize online social media to seek out possible donors. The Baltimore Sun reports that 80,000 people in the United States are currently awaiting kidney transplants, but just over 16,000 were completed last year. For individuals seeking to increase their chances of finding a donor, Annette Whinery, the coordinator of University Medical Center’s living donor program, says that it is becoming common for patients to seek out living donors on their own, often through church, work, family, and friends. Dr. Ngoc L. Thai, director of Allegheny General Hospital’s Center for Abdominal Transplantation, recently completed a transplant surgery in which the donor and recipient connected via Facebook. “It’s the way of the future,” according to Dr. Thai, who says that he expects more patients to turn to social networking websites for help finding donor matches. In addition to Facebook, some patients and their family members have turned to Craigslist and other websites to find possible donors.

Some individuals awaiting transplant and those who have recently received a transplant choose to use social networking websites to tell their story, rather than to ask others to consider donating an organ. Through blogs, Facebook, and Twitter, individuals in need of kidneys and other organs are able to keep others informed. Recent research has shown that people fighting chronic illnesses and those with serious health problems, such as those that might require an organ transplant, are using social media to find information and connect with others with similar ailments. Social networks like the Transplant Trust and Patients Like Me allow patients awaiting transplants, their families, physicians, donors, and others to connect with one another. In a recent study by Teri Browne, PhD, from the University of South Carolina in Columbia, this type of connection was shown to help patients navigate and understand the process of getting a transplant more easily.

According to Dave Bosch, spokesman for the Gift of Hope, an organ and tissue donor network, “Social media has become the way people communicate, very personally, about what’s going on in their life.” Dr. Kenneth Prager, director of clinical ethics and chairman of the Medical Ethics Committee at New York Presbyterian Hospital, notes that Internet appeals for organ donations raise a number of questions of fairness. While Dr. Prager states that “Solicitations undermine the concept of a level playing field,” which is the primary objective of the OPTN, “there is nothing illegal in advertising or using the Web for personal or health reasons. Altruistic organ donors have the legal right to designate recipients.” It is important to note, however, that the sale of kidneys and other organs is illegal, and all donations must be made without compensation.

Though the use social media to address matters related to an individual’s health may seem somewhat unusual, it is a trend that seems to be gaining in popularity. Some experts even argue that the solicitation for kidney and other organ donation on websites like matchingdonors.com, Craigslist, and Facebook may help to encourage individuals to consider donation and benefit the population of individuals in need of organs as a whole.

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Physicians Using Twitter

A recent report from Forrester Research indicates that the use of social networking websites among people aged 35 to 54 increased by 60 percent in the last year. Twitter and Facebook have become popular among federal centers like the Centers for Disease Control and Prevention (@CDCemergency), hospitals like the University of Maryland Medical System (University of Maryland Medical Center - @UMMC), and even individual doctors.

Through Twitter, doctors are able to post updates about the events of their day, connect with other healthcare workers, communicate with and inform patients, and even document surgeries and procedures. Results of a recent study by the American Telemedicine Association indicate that doctors and patients have seen beneficial outcomes from using Twitter to connect. Some healthcare providers, like pediatric gastroenterologist Bryan Vartabedian, MD (@Doctor_V), chose to use Twitter as a means to extend their web presence and communicate with existing and potential patients. Clinical nurse Phil Baumann notes additional medical uses for Twitter, including:

1. Disaster alerting and response,

2. Diabetes management including blood glucose tracking,

3. Drug safety alerts from the FDA,

4. Biomedical device data capture and reporting,

5. Shift-bidding for healthcare professionals,

6. Diagnostic brainstorming,

7. Rare disease tracking and resource connection,

8. Smoking cessation assistance,

9. Broadcasting infant care tips for new patients, and

10. Post-discharge patient follow-up and consultation.

Dr. Joseph Kvedar (@jkvedar), the Director of the Center for Connected Health and iCons in Medicine Member, describes Twitter as “a method of mass communication” that is real-time and “designed for mobility.” The ability to constantly update information also makes Twitter particularly appealing to government health organizations such as the United States Centers for Disease Control and Prevention (@CDCemergency) and the UK’s NHS (@NHSChoices). Using Twitter, these agencies are able to provide up-to-the-minute information regarding disease outbreaks, contact numbers to call for assistance, and other pertinent information. Medical associations such as the Radiological Society of North America (@RSNA), Healthcare Information and Management Systems Society (@HIMSS), and the Biotechnology Industry Organization (@BIOConvention) also use Twitter to keep their members informed about current news, promote events and meetings, and provide a sense of community.

While some providers use Twitter to connect with their patients and peers, others use it to provide information and updates during medical procedures. Recently surgeons in Iowa used Twitter to allow a woman’s family to follow the progress of her surgery in real-time. The Children’s Medical Center in Dallas provided updates when a father’s kidney was transplanted into his son, and the Henry Ford Medical Center (Henry Ford Health System - @henryfordnews) has tweeted during several procedures since January. These updates provide individuals who might not be comfortable watching a surgical procedure to still gain an understanding of the process and a chance to ask questions.

For the 61 percent of Americans who search online for medical advice, Twitter may not provide enough information. The social networking website Facebook allows healthcare workers or medical associations to connect with colleagues and patients. For the reported 55 percent of patients who want to be able to communicate with their doctors via email (according to a Manhattan Research study) it can offer another means of communication. Dr. William Cooper, a cardiothoracic surgeon, says that Facebook presents a way to always be available to his patients. According to Pauline Chen, MD (@paulinechen), it is unclear if engagement via Facebook and Twitter helps or hinders a patient-doctor relationship.

This concern is echoed by other physicians, including Dr. Sachin Jain, a resident physician at Bringham and Woman’s Hospital, who has accepted Facebook friend requests from patients, but “wondered about the appropriateness of the interaction.” In addition to the expectation that a physician would be “instantly available 24/7,” some doctors worry about the security of Facebook and other social networking websites, as well as potential HIPAA violations and litigation concerns. For many physicians, Facebook, Twitter, and other forms of social media are seen as “blurring the line between work and private life” - something that may cause some hesitation and discomfort.

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The New York Times on Twitter Users - USA Today/Science Fair on the Medical Uses of Twitter - Associated Press on Tweeting During Operations - On Medical Associations Using Twitter - Dr. Pauline Chen on Twitter - CNN on Physicians on Facebook - More on Physicians and Medical Professionals Using Twitter

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