This article is from the source 'nytimes' and was first published or seen on . It last changed over 40 days ago and won't be checked again for changes.

You can find the current article at its original source at http://www.nytimes.com/2016/05/10/opinion/using-tweets-and-posts-to-speed-up-organ-donation.html

The article has changed 2 times. There is an RSS feed of changes available.

Version 0 Version 1
Using Tweets and Posts to Speed Up Organ Donation Using Tweets and Posts to Speed Up Organ Donation
(about 11 hours later)
First of two articles.First of two articles.
In 2004, Rick Segal, a father of four living in Rye, N.Y., found his stamina inexplicably failing him as he did his regular runs. He went to see his doctor, and learned he had a genetic disease that enlarges and weakens the heart. Segal was about to turn 50, but his heart was pumping at one-eighth of a normal heart’s effectiveness. He needed a transplant.In 2004, Rick Segal, a father of four living in Rye, N.Y., found his stamina inexplicably failing him as he did his regular runs. He went to see his doctor, and learned he had a genetic disease that enlarges and weakens the heart. Segal was about to turn 50, but his heart was pumping at one-eighth of a normal heart’s effectiveness. He needed a transplant.
He got on a waiting list, and for the next five years, he was in and out of hospitals while his heart deteriorated further. He underwent multiple 12-hour operations. A defibrillator was installed in his chest. Then came mechanical pumps for both ventricles. “I got a belt from a police wholesale site to carry around these huge batteries,” he said. Because the heart pumps had an 18-month life span, an imminent transplant became his only option.He got on a waiting list, and for the next five years, he was in and out of hospitals while his heart deteriorated further. He underwent multiple 12-hour operations. A defibrillator was installed in his chest. Then came mechanical pumps for both ventricles. “I got a belt from a police wholesale site to carry around these huge batteries,” he said. Because the heart pumps had an 18-month life span, an imminent transplant became his only option.
So he and his family played a risky card. “You are allowed to choose a 30-day period where you can be listed as ‘1A,’” he said, referring to the highest priority designation for transplant. During that month, Segal needed to be matched with a donor with blood type O who weighed at least 180 pounds. It didn’t help that he lived in New York, which ranked 49th of the 50 states in the percentage of people registered as organ donors.So he and his family played a risky card. “You are allowed to choose a 30-day period where you can be listed as ‘1A,’” he said, referring to the highest priority designation for transplant. During that month, Segal needed to be matched with a donor with blood type O who weighed at least 180 pounds. It didn’t help that he lived in New York, which ranked 49th of the 50 states in the percentage of people registered as organ donors.
On Monday, Feb. 9, 2009, the 29th day of his 1A status, he and his wife were driving on the Hutchinson River Parkway to NewYork-Presbyterian Hospital to seek end-of life-counseling — “We had pretty much given up hope,” he said — when the phone rang. “They said: Go home, pack your bags. A heart has been found.” A 26-year-old intravenous drug user from Boston had overdosed. The next day his heart was pumping in Segal’s body.On Monday, Feb. 9, 2009, the 29th day of his 1A status, he and his wife were driving on the Hutchinson River Parkway to NewYork-Presbyterian Hospital to seek end-of life-counseling — “We had pretty much given up hope,” he said — when the phone rang. “They said: Go home, pack your bags. A heart has been found.” A 26-year-old intravenous drug user from Boston had overdosed. The next day his heart was pumping in Segal’s body.
“They tell you in six months, you’ll feel like you’re 20 or something,” he said. “It was true.”“They tell you in six months, you’ll feel like you’re 20 or something,” he said. “It was true.”
Over the past 60 years, since the first kidney transplant was performed in Boston in 1954, there have been astonishing advances in the field. Today, donors and recipients can be precisely matched through tissue typing, organs can be transported long distances, and organ rejection and debilitating side effects can be controlled with improved immunosuppressant drugs. Last year, nearly 31,000 lives were saved in the United States through transplants.Over the past 60 years, since the first kidney transplant was performed in Boston in 1954, there have been astonishing advances in the field. Today, donors and recipients can be precisely matched through tissue typing, organs can be transported long distances, and organ rejection and debilitating side effects can be controlled with improved immunosuppressant drugs. Last year, nearly 31,000 lives were saved in the United States through transplants.
But there is a problem: Demand for organ transplants vastly outstrips supply, as my colleague Tina Rosenberg has reported. In 2015 in the United States, there were only about 9,000 deceased donors (each of whom can save up to eight lives) and 6,000 living donors (who most often donate a kidney or liver lobe). Today, more than 121,000 people are on waiting lists, roughly 100,000 for kidney transplants, 15,000 for livers, and 4,000 for hearts. And the lists keep getting longer — 3,000 people are added to the kidney list each month. Last year, more than 4,000 people died while waiting for a new kidney; 3,600 dropped off the waiting list because they became too sick to qualify for a transplant.But there is a problem: Demand for organ transplants vastly outstrips supply, as my colleague Tina Rosenberg has reported. In 2015 in the United States, there were only about 9,000 deceased donors (each of whom can save up to eight lives) and 6,000 living donors (who most often donate a kidney or liver lobe). Today, more than 121,000 people are on waiting lists, roughly 100,000 for kidney transplants, 15,000 for livers, and 4,000 for hearts. And the lists keep getting longer — 3,000 people are added to the kidney list each month. Last year, more than 4,000 people died while waiting for a new kidney; 3,600 dropped off the waiting list because they became too sick to qualify for a transplant.
Although 95 percent of Americans support organ donation, fewer than half of American adults are registered as donors. Research suggests that the number who donate organs after death could be increased greatly. Moreover, surveys indicate untapped support for living donation, too; nearly one in four people have told pollsters they would be willing to donate a kidney to save the life of a friend, community member or stranger. “If one in 10,000 Americans decided to donate each year, there wouldn’t be a shortage,” said Josh Morrison, who donated a kidney to a stranger and founded WaitList Zero, an organization that works to increase living kidney donation.Although 95 percent of Americans support organ donation, fewer than half of American adults are registered as donors. Research suggests that the number who donate organs after death could be increased greatly. Moreover, surveys indicate untapped support for living donation, too; nearly one in four people have told pollsters they would be willing to donate a kidney to save the life of a friend, community member or stranger. “If one in 10,000 Americans decided to donate each year, there wouldn’t be a shortage,” said Josh Morrison, who donated a kidney to a stranger and founded WaitList Zero, an organization that works to increase living kidney donation.
What could be done to harness people’s generous impulses more effectively to save lives?What could be done to harness people’s generous impulses more effectively to save lives?
One group attacking the question is Organize, which was founded in 2014 by Rick Segal’s son Greg, and Jenna Arnold, a media producer and educator who has worked with MTV and the United Nations un engaging audiences in social issues. Organize uses technology, open data and insights from behavioral economics to simplify becoming an organ donor. One group attacking the question is Organize, which was founded in 2014 by Rick Segal’s son Greg, and Jenna Arnold, a media producer and educator who has worked with MTV and the United Nations in engaging audiences in social issues. Organize uses technology, open data and insights from behavioral economics to simplify becoming an organ donor.
This approach is shaking up longstanding assumptions.This approach is shaking up longstanding assumptions.
For example, in the last four decades, people have most often been asked to register as an organ donor as part of renewing or obtaining a driver’s license. This made sense in the 1970s, when the nation’s organ procurement system was being set up, says Blair Sadler, the former president and chief executive of Rady Children’s Hospital in San Diego. He helped draft the Uniform Anatomical Gift Act in 1967, which established a national legal framework for organ donation. “Health care leaders were asking, ‘How do we make this more routine?’” he recalled. “It’s hard to get people to put it in their wills. Oh, there’s a place where people have to go every five years” — their state Department of Motor Vehicles.For example, in the last four decades, people have most often been asked to register as an organ donor as part of renewing or obtaining a driver’s license. This made sense in the 1970s, when the nation’s organ procurement system was being set up, says Blair Sadler, the former president and chief executive of Rady Children’s Hospital in San Diego. He helped draft the Uniform Anatomical Gift Act in 1967, which established a national legal framework for organ donation. “Health care leaders were asking, ‘How do we make this more routine?’” he recalled. “It’s hard to get people to put it in their wills. Oh, there’s a place where people have to go every five years” — their state Department of Motor Vehicles.
Today, governments allow individuals to initiate registrations online, but the process can be cumbersome. For example, New York State required me to fill out a digital form on my computer, then print it out and mail it to Albany. Donate Life America, by contrast, allows individuals to register online as an organ donor just by logging in with email or a Facebook or Google account — much easier.Today, governments allow individuals to initiate registrations online, but the process can be cumbersome. For example, New York State required me to fill out a digital form on my computer, then print it out and mail it to Albany. Donate Life America, by contrast, allows individuals to register online as an organ donor just by logging in with email or a Facebook or Google account — much easier.
In practice, legal registration may be overemphasized. It may be just as important to simply make your wishes known to your loved ones. When people tell relatives, “If something happens to me, I want to be an organ donor,” families almost always respect their wishes. This is particularly important for minors, who cannot legally register as donors.In practice, legal registration may be overemphasized. It may be just as important to simply make your wishes known to your loved ones. When people tell relatives, “If something happens to me, I want to be an organ donor,” families almost always respect their wishes. This is particularly important for minors, who cannot legally register as donors.
Using that insight, Organize is making it easier to conduct social media campaigns to both prompt and collect sentiments about organ donation from Facebook, Twitter and Instagram.Using that insight, Organize is making it easier to conduct social media campaigns to both prompt and collect sentiments about organ donation from Facebook, Twitter and Instagram.
If you post or tweet about organ donation, or include a hashtag like #iwanttobeanorgandonor, #organdonor, #donatemypart, or any of a number of other relevant terms, Organize captures the information and logs it in a registry. In a year, it has gathered the names of nearly 600,000 people who declare support for organ donation. Now the big question is: Will it actually increase organ donation rates? If you post or tweet about organ donation, or include a hashtag like #iwanttobeanorgandonor, #organdonor, #donatemyparts, or any of a number of other relevant terms, Organize captures the information and logs it in a registry. In a year, it has gathered the names of nearly 600,000 people who declare support for organ donation. Now the big question is: Will it actually increase organ donation rates?
We should begin getting an idea pretty soon. Organize has been working with the Nevada Donor Network to test its registry. And in the coming months, several other states will begin using it.We should begin getting an idea pretty soon. Organize has been working with the Nevada Donor Network to test its registry. And in the coming months, several other states will begin using it.
Most of the time, when a death occurs under circumstances that qualify for organ donation, it’s still the next of kin who authorize donation. “When families are going through the most horrific, tragic time of life, when family advocates on the ground talk about donation, the words they hear almost 100 percent of the time are, ‘I just wish I knew what they wanted,’” explained Simon Keith, the chief operating officer of the Nevada Donor Network. (Keith was the first person to play a professional sport — soccer — after undergoing a heart transplant.)Most of the time, when a death occurs under circumstances that qualify for organ donation, it’s still the next of kin who authorize donation. “When families are going through the most horrific, tragic time of life, when family advocates on the ground talk about donation, the words they hear almost 100 percent of the time are, ‘I just wish I knew what they wanted,’” explained Simon Keith, the chief operating officer of the Nevada Donor Network. (Keith was the first person to play a professional sport — soccer — after undergoing a heart transplant.)
“It’s a moral imperative to help next of kin make the most educated decision about their deceased loved one,” said Arnold, the Organize co-founder. “They’re often desperately looking for a sign. Seeing ‘I want to be an #organdonor’ explicitly, in someone’s own words, could be that sign.”“It’s a moral imperative to help next of kin make the most educated decision about their deceased loved one,” said Arnold, the Organize co-founder. “They’re often desperately looking for a sign. Seeing ‘I want to be an #organdonor’ explicitly, in someone’s own words, could be that sign.”
Each year, organ procurement organizations identify thousands of potential donors in cases that don’t lead to donations. Organ donation rates are lowest among people between the ages of 50 and 75. Many assume wrongly that organs from older people are not as valuable as those from someone younger. Others worry that donation violates religious beliefs, although mainstream religions strongly encourage it as an act of charity.Each year, organ procurement organizations identify thousands of potential donors in cases that don’t lead to donations. Organ donation rates are lowest among people between the ages of 50 and 75. Many assume wrongly that organs from older people are not as valuable as those from someone younger. Others worry that donation violates religious beliefs, although mainstream religions strongly encourage it as an act of charity.
What’s needed are more conversations among parents, spouses and children, so everyone can be fully informed and understand one another’s convictions. “The beautiful thing about social media, especially Facebook, is that it’s cross generational,” says Arnold. “We target millennials in our marketing because they tend to be the earliest adopters of new technology, but we specifically feed them content to share with their parents.”What’s needed are more conversations among parents, spouses and children, so everyone can be fully informed and understand one another’s convictions. “The beautiful thing about social media, especially Facebook, is that it’s cross generational,” says Arnold. “We target millennials in our marketing because they tend to be the earliest adopters of new technology, but we specifically feed them content to share with their parents.”
Of course, concerns arise from using social declarations to inform major decisions. Can identity be confirmed? Is a tweet a compelling indication of intent? In the end, families must decide these questions based on information available. Legally speaking, any “statement or symbol” that indicates a donor’s wish can serve as consent. “The law is written broadly enough that you could write it on a cocktail napkin,” Greg Segal says.Of course, concerns arise from using social declarations to inform major decisions. Can identity be confirmed? Is a tweet a compelling indication of intent? In the end, families must decide these questions based on information available. Legally speaking, any “statement or symbol” that indicates a donor’s wish can serve as consent. “The law is written broadly enough that you could write it on a cocktail napkin,” Greg Segal says.
Since 2015, the Nevada Donor Network has been using Organize’s registry experimentally, said Keith. “In 2015, we identified 10 additional matches that would have provided another 35 organs,” he said. “That translates to an 11 percent increase over the 320 organs we transplanted that year. We’re now at a point where if we get a match, we’ll begin using the information in conversations.”Since 2015, the Nevada Donor Network has been using Organize’s registry experimentally, said Keith. “In 2015, we identified 10 additional matches that would have provided another 35 organs,” he said. “That translates to an 11 percent increase over the 320 organs we transplanted that year. We’re now at a point where if we get a match, we’ll begin using the information in conversations.”
He’s captivated by the potential. It took 40 years to reach 150 million registered donors, he said. “How many of the others have phones? All of them. You can literally have Taylor Swift stand in front of 60,000 people and say, ‘If you support organ donation, tweet #isupportorgandonation.’”He’s captivated by the potential. It took 40 years to reach 150 million registered donors, he said. “How many of the others have phones? All of them. You can literally have Taylor Swift stand in front of 60,000 people and say, ‘If you support organ donation, tweet #isupportorgandonation.’”
Through Instagram, Arnold added, celebrities could share photos of transplant beneficiaries and reach millions of people in demographics that are largely untapped for organ donation education.Through Instagram, Arnold added, celebrities could share photos of transplant beneficiaries and reach millions of people in demographics that are largely untapped for organ donation education.
“The game change of what Organize is doing — and I think it will save lives — is to build on the increasing acceptance of people making public declarations about their beliefs on a whole variety of things and applying that to their wishes about organ donation,” said Sadler, who helped draft the original organ donation act. “Most of us don’t have these conversations. This could change the dynamic for grieving families — being able to acknowledge the wishes of their family member and find purpose in a tragedy.”“The game change of what Organize is doing — and I think it will save lives — is to build on the increasing acceptance of people making public declarations about their beliefs on a whole variety of things and applying that to their wishes about organ donation,” said Sadler, who helped draft the original organ donation act. “Most of us don’t have these conversations. This could change the dynamic for grieving families — being able to acknowledge the wishes of their family member and find purpose in a tragedy.”
For Rick Segal, as the recipient of a gift of life, there is a dimension to Organize’s work that has brought an added measure of comfort. “There’s something called survivor’s guilt,” he said. “You know that if you were given an organ, three other people didn’t get it. You are walking around every day with the very thing that would have saved their lives — so you have this tremendous drive to prove that you are worthy. This phantom competition never leaves your mind. I feel that at least, by having what happened to me instill the vision and motivation in Greg and Jenna to take on this challenge, I’m doing good in terms of payback.”For Rick Segal, as the recipient of a gift of life, there is a dimension to Organize’s work that has brought an added measure of comfort. “There’s something called survivor’s guilt,” he said. “You know that if you were given an organ, three other people didn’t get it. You are walking around every day with the very thing that would have saved their lives — so you have this tremendous drive to prove that you are worthy. This phantom competition never leaves your mind. I feel that at least, by having what happened to me instill the vision and motivation in Greg and Jenna to take on this challenge, I’m doing good in terms of payback.”
I’ll continue to track Organize’s work. And next week, I will report on efforts to increase living organ donation, an area of great potential.I’ll continue to track Organize’s work. And next week, I will report on efforts to increase living organ donation, an area of great potential.