Social media for social change: Stanford professor uses Facebook, Twitter and personal stories to promote bone marrow donations
Using online social networks to register more Indians as bone marrow donors has become both a Good Samaritan cause for Jennifer Aaker and part of her curriculum. She's spearheading a campaign relying on social media to get 100,000 more people signed up with the national bone marrow donor registry. And she's working with students from Stanford's Haas Center for Public Service to help them organize around a specific cause that has deep meaning to them.
One email is all it took for Chaitali Nadig to try saving a life.
"Due to the stage of his disease, he has a very short time window," the email stressed. "Hence the need is URGENT."
The email – sent by the Fremont Hindu Temple to its members – included a picture of Samir. He's smiling.
"I had to come here today," Nadig said outside the temple this past Sunday. She had just rubbed a few cotton swabs along the inside of her check to produce a DNA sample that will show whether she's a potential bone marrow donor for Samir or someone else needing a transplant.
"Looking at this kid's face in the email and seeing how brave he is made me want to do something," she said. "And doing this cheek swab has almost no effect on my life, but it could save someone else's."
Marrow matches are almost always made among people of the same ethnic origin. And with only about 140,000 South Asians in the national bone marrow donor registry, Samir – who was born in Fremont a decade after his parents moved to California from India – learned quickly that a match would be hard to find.
Sunday's drive drew 62 people affiliated with the temple. Hardly any of them knew Samir or his relatives. But many said they read the same email that Nadig received or saw a related Facebook site maintained by Samir's family. And that was enough of a nudge to get them to show up.
"When you learn about something from your friends or people you trust through email or Facebook, it's much more persuasive than a message coming from a corporation or someone you don't know," said Jennifer Aaker, a marketing professor at Stanford's Graduate School of Business who is helping attract attention to Samir's search for a donor.
"When a request comes from an area of deep personal meaning by someone you trust, you are more likely to take action," she said.
Social media for social change
The idea that online social media can inspire people to take small, individual steps that snowball into significant social change is at the heart of Aaker's work at Stanford.
And using those tools to register more Indians as marrow donors has become both a Good Samaritan cause for Aaker and part of her curriculum. She's spearheading One Hundred Thousand Cheeks, a campaign relying on social media to get 100,000 more people signed up with the national bone marrow donor registry through cheek swab drives like the one held at the Fremont temple.
Aaker is working with students from Stanford's Haas Center for Public Service to help them organize around a specific cause that has deep meaning to them – and in the process tell the story of people like Samir and Sanjana Sahni, a mother of twins living in Sunnyvale, Calif., who needs a marrow transplant to combat her multiple myeloma.
"Our hope is to harness research on social persuasion, happiness and emotional contagion to create infectious action," Aaker said.
She was recently in India – where she's pushing for the creation of a country-wide bone marrow registry – to give several presentations about her work with online social networking. She coupled those talks with three marrow registration drives that helped enlist more than 300 potential donors. Aaker holds similar events at Stanford and Bay Area companies.
"I used to think social networking was a waste of time," Aaker said. "I thought the more time you spend on Facebook and Twitter, the more narcissistic and self-involved you become. But it became clear that social media can be used to amplify altruism and create social good in the world."
Chaitali Nadig registers as a potential bone marrow donor by swabbing her cheek to produce a DNA sample at the Fremont event.
Lessons from a student
That realization came a few years ago after Robert Chatwani, one of Aaker's students at the time, told her about Sameer Bhatia. Bhatia, a friend of Chatwani's who received his bachelor's degree from Stanford in 1997, was diagnosed with leukemia in 2007.
Facing a 1-in-20,000 chance of finding a donor to match his Indian DNA, Bhatia and his friends devised a strategy using emails, Facebook and YouTube to spread the word urging South Asians to register as marrow donors. Their online campaign became viral. Within 11 weeks, they managed to log 24,611 South Asians in the national bone marrow registry.
Bhatia found his match and received a marrow transplant. Although he died a few months later, his story inspired Aaker to teach a class on how to harness social technology to create social good. Her teaching and research blossomed into The Dragonfly Effect, a recently published book that highlights Bhatia's story and other cases where social media were used to focus attention on a cause and rally large numbers of people to take action.
And her work has attracted those who are in most need of her help.
Close calls and another hope
Samir Pendse's parents contacted Aaker and plugged into her social network in November, shortly after doctors told them the 18-year-old's leukemia had returned.
Samir was first diagnosed in 2003, a shock followed by three years of chemotherapy treatments that often kept him out of school and off the playground.
"It was a very hard treatment," said his aunt Amrita Lokre. "And it made it even harder to see all of his friends outside playing and doing everything he wanted to do but couldn't."
The chemo battered his cancer into remission. And in the summer of 2007, Samir and his family celebrated with a trip to visit relatives in India.
But good health didn't last very long. Shortly after returning home, the leukemia – and the treatments – were part of his life once again. But his family also learned that a bone marrow transplant offered hope for a cure, and they started organizing marrow drives throughout the Bay Area.
They advertised the events among the local Indian community using email and talking to as many people as they could.
"It was an uphill battle," said Samir's cousin Chetan Patwardhan.
He figures the family's efforts paid off by getting about 2,000 people signed into the bone marrow registry. And early on, a match for Samir was found. But the potential donor backed out.
"There's a misunderstanding of what it takes to donate marrow," Lokre said. "People think it will hurt or maybe make them sick. But that isn't true, and they just don't realize that." During the procedure, marrow is drawn from the pelvic bones with a needle and syringe. Most donors are released from the hospital hours later.
By early 2010, Samir's leukemia went into remission once again.
Now the cancer is back. And this time, chemotherapy won't work. Samir is scheduled to receive a cord blood transplant – a promising alternative to a marrow transplant – just before the new year.
Once again, he came close to having a marrow transplant. A potential donor who registered during one of the drives Aaker helped organize in Mumbai was an almost perfect match for Samir. But timing and logistics scuttled that chance.
Still, the hope was found – half a world away, but within reach in a growing network of people realizing their small steps could create a big change in someone's life.
Adam Gorlick, Stanford News Service: (650) 725-0224, firstname.lastname@example.org