Signing Up as an Organ Donor, the Easy Way
By BOB TEDESCHI | New York Times
Last September in this newspaper, the economist Richard H. Thaler wrote an article calling on Steven P. Jobs of Apple to create an app that would enable people to quickly register to donate organs. Mr. Jobs didn’t answer the call, but Raymond Cheung, an independent app developer, did.
His app, DonateLives, which is free, was promptly lost in the sea of entertainment, sports and utility offerings that dominate Apple’s App Store. It has been downloaded fewer than 1,000 times — which is a shame for those who are interested in public health issues and those who are inclined to donate.
I recently tested an updated version of the app, which works with a wider range of Apple devices, and it’s well designed. Other apps aimed at prospective blood donors or bone marrow donors were not as good.
DonateLives is essentially a shortcut to Web pages for organ donation registration. You could always seek them out on your desktop computer, but it would be more challenging.
Don’t have the energy to type “organ donation registration” intoGoogle and sift through the 200,000 results for the right link? Got a few minutes while you wait in line at the grocery store? Pick up the iPhone, download the app and it quickly leads the way.
DonateLives opens with a page that is slightly over the top, because its users presumably already want to donate. “Do you want to be a hero?” it asks. “Do you want to save a life? How about nine?”
That page gives way to another screen with a scrolling list of states. Choose one and the app displays the state’s official donor registry organization, and the specific page for registration.
The page on which I registered, for Connecticut residents, was hosted by the Donate Life New England Registry. Registering took about five minutes, and included a fair amount of personal information, as one might imagine.
I assumed the page was encrypted, but on my iPhone there was no way to tell, given the lack of an “https” in the Web address, or a padlock icon, a common feature on desktop browsers.
David Fleming, the executive director of Donate Life America, a nonprofit organization that operates many state organ procurement registries, says the page is encrypted, as is any donor information stored on the group’s servers.
The registration form asked whether I wished to donate my organs for research purposes, too, and it allowed me to dedicate my registration to the memory of a friend.
I wasn’t certain whether I was still listed as an organ donor in my state, given the decades that had elapsed since I first registered (while receiving my driver’s license). I did it again anyway.
Only after I had checked the “electronic signature” box, confirming my registration, did I receive a notice that I had signed on with an independent registry, and that my actions would not change my existing donor information at the Department of Motor Vehicles.
But that also raised a question.
When treating patients who may be eligible to donate organs, hospitals will contact the organ procurement organization in their local area. What if the information stored with the state conflicts with the information I gave to the local organ procurement organization? What if, for instance, I told only one of the organizations that I was willing to donate my organs for research?
Mr. Fleming, of Donate Life America, said hospitals would follow a person’s latest directions, whether they were registered with the Department of Motor Vehicles or an organ procurement organization.
For most states listed, the app connects users to a registry operated by Donate Life America, and in most of those states the registration is completed entirely online. However, for New York, the app connects to the state health department, which requires donors to print, sign and mail a consent form to confirm the registration.
The DonateLives app did not capitalize on my altruism by also offering me a way to commit to, say, a bone marrow sample or a blood donation. Other options to do that are available, but none are great.
The Red Cross and other medical organizations have yet to release an app for helping people schedule their next blood donation. The “iGive Blood” iPhone app ($1) will help users track their last donation and predict when they may donate again, but even that small price is likely to discourage all but the most committed blood donors.
As for bone marrow registration, the free “Project Swab Marrow Kit” app requires the right device, and some blind faith. The app didn’t open on an iPhone 4 or iPhone 3GS, but it worked well on a second-generation iPod Touch, an original iPhone and — go figure — an iPad.
The app includes stories, videos and a fact sheet about bone marrow registration, as well as a form to request a so-called Marrow Kit, which includes cotton swabs for taking a tissue cell sample from one’s inner cheek, the current method for finding bone marrow matches.
The forms were easy to complete, but I never received a confirmation of my order, and more than a week later the swab kit had not arrived, so proceed with caution.
Android and BlackBerry users have no apps to help speed the registration process. They may, of course, search “organ donor registry” on their mobile phones and dig through the results to find the right site.
Or maybe they should just wait until medical organizations realize how cheap it is to produce a decent mobile app and offer it to users free.