Is Hélène Campbell right about the organ donor crisis?

Part two in a series on life and death on the Internet
Helene Campbell, double-lung transplant recipient smiles during a news conference announcing Facebook would allow users to indicate their donor status in Ottawa, Tuesday September 18, 2012. THE CANADIAN PRESS/Adrian Wyld
Helene Campbell during a conference in September announcing Facebook would allow users to indicate their donor status (Adrian Wyld/CP)

This is the second part of a series of articles adapted from the 2012 Hancock Lecture, “Who Live and Who Dies, Will Social Media Decide?” recently delivered at the University of Toronto by Julia Belluz. This installment looks at the use of social media for health campaigning about organ donation.  Read parts Read parts onethree and four.

Anyone who opened a newspaper or turned on the television some time in the last eight months has probably heard of Hélène Campbell. She’s the 20-year-old Ottawa native who was admitted to hospital last July with collapsed lungs. The doctors said it was pulmonary fibrosis, which scars and thickens the lungs to the point of incapacity, death. Her only option: a double-lung transplant.

In January, Campbell was placed on the donor list. In the past, the story probably would have ended there. The would-be donor recipient would wait quietly for her call. But in January, Campbell turned to social media. She started a blog to document her journey and raise funds for the move to Toronto that was necessary as she awaited lungs.

Out of that initiative sprang a third goal: to raise awareness about the need for organ donors. She tweeted to the pop star Justin Bieber. He, in turn, shared her story to his 29 million Twitter followers. This absolutely silly, spontaneous interaction gave Campbell a global audience.

The exchange with Bieber also led thousands of Ontarians to make the very personal decision to become organ donors.

Momentum really gained when Campbell caught the attention of Ellen DeGeneres and the Ellen Show. She was featured on Ellen, and following her appearance, received messages from people as far as South Africa and the Swiss Alps wishing her ‘fresh new air for her lungs,’ telling her she had driven awareness about organ donation to another level.

Hers was a gripping and emotional story. A heroic one. In her most dire moment, when she was at her sickest, she looked outward and asked how she could help society.

Every day, we followed her every step to the transplantation and afterward. Donor rates reportedly continued to surge in Canada, and probably elsewhere.

When Campbell finally received her new lungs, her leave from hospital was a media event, and she was even welcomed back to her hometown by the federal health minister. The minister took the opportunity to announce $10 million in funding to support a national transplant research program.

This coverage, this attention on organ donation, the research program, were surely positive, right?

An Ontario policymaker once told me that celebrities and popular media campaigns apply the kind of pressure that get things on the policy agenda—maybe the most powerful pressure—but then it’s a question of what actions are actually taken and the quality of the policies that are made.

In this case, while Campbell’s crusading and the media around it were helpful in many ways, and raised awareness about an important health issue, it may have obscured or distracted us from some of the donor problems we ought to be examining as a society, some of the policy questions we ought to be grappling with.

Ones that could influence, even save, many lives.

Campbell’s message is: There’s a gap in the number of organs that are needed, and the number of people who sign up as donors, and if only we could bridge the gap, we’d shorten waiting lists, we’d alleviate the chronic shortage.

This logic comes through in other social media forays into organ donation, such as Facebook’s. In May, Facebook CEO Mark Zuckerberg announced that the social media giant could play a role in solving the organ-donor crisis: users would be allowed to declare their organ donor status on their Facebook profiles, and to connect to local donor registries.

Facebook said if people see their friends signing up, they might be more inclined to do so as well. And when the time came to make decisions about what to do with the remains of loved ones, families could look at Facebook profile for answers.

When Facebook came out with the announcement, this seemed like a promising proposition. Network science, or “the science of social pressure,” tells us that the behaviours of our friends and even friends’ friends spread through networks, influence our personal health choices—from whether we smoke and exercise, to our obesity.

Theoretically, a declaration of organ donation on Facebook could spread through the billion-person social network and get many more people signed up on donor registries to give up their organs.

But early data from the U.S. suggested Facebook may not be the panacea for the organ-donor crisis after all: While there was an initial spike in donors in the four states that were looked at—interest trailed off almost immediately.

This may not be a surprise to the research community. The literature on what gets people to sign up for organ donation, and what actually solves organ-donor crises, suggests it’s a murky and complex equation, determined by culture and the structure of local health systems.

Saving lives through organ donation is not even necessarily accomplished by getting people to declare themselves donors.

For example, some have argued that “opt out” legislation—or presumed consent—would increase donation rates in countries. This means you wouldn’t even have to sign up; everyone would be a donor, and that would be it. Problem solved. But then studies comparing opt-in to opt-out regimes found that countries with presumed consent don’t necessarily have higher donation rates.

In fact, some places with opt-out systems, like Sweden, have extraordinarily low donor rates. And bringing in an opt-out system has actually had the opposite of the desired effect in some countries, such as Brazil. There, donor rates actually went down because people didn’t trust the government’s intentions and there were accusations of body snatching.

Spain is often deemed the gold standard for organ donation with its enviable donor rates and opt-out policy. Spain introduced its opt-out law in 1979 and only 10 years later did rates start to increase. That was when Spain founded a national transplant organization.

It wasn’t just the opt-out legislation—or getting more people on the donor registry— that increased the donation rate in the country. It was an entire health-system overhaul. It was a combination of legislation, transplantation system re-organization and infrastructure investments, as well as availability of organs and awareness about organ donation and transplantation, that made Spain the envy of the organ donor world. They invested in education, and starting carving up dedicated resources in hospitals for organ donation.

One Alberta nephrologist who studies donor systems, Dr. Scott Klarenbach, pointed out that there actually isn’t good evidence that donor registries work to improve organ donor rates. “Donor registries might be a waste of money: they take a lot of resources to set up and maintain and it’s not clear when you have them running how much they impact actual donor rates.”

He and other Alberta researchers, including Tim Caulfield, have been calling for an evidence-based approach to organ donation, suggesting that Canada rethink its assumptions. For example, their research shows the public accepts financial incentives for living and deceased organs, so they’ve been asking governments to rethink the assumption that donation ought to be altruistic. As Caulfield put it: “This is about saving lives. We need to move beyond speculation.”

We have to study and identify the bottlenecks in the system that lead to our subpar organ-donor rates. If we don’t have a good system in place to reach out to families about the organ donation of a loved one in time, if we don’t have hospital beds to do the procedures, if there are inadequate links between the information on registries and health professionals who need that information the point of care—adding names to a registry won’t mean much.

To be clear: I’m not suggesting Hélène Campbell or Facebook’s executives should be responsible for communicating nuanced research evidence. These ideas are not reducible to sound bites and they are not the stuff of viral social-media movements. But that’s exactly why we need to question these campaigns, and the evidence that influences our health choices and policies.

Science-ish is a joint project of Maclean’s, the Medical Post and the McMaster Health Forum. Julia Belluz is the associate editor at the Medical Post. Got a tip? Seen something that’s Science-ish? Message her at [email protected] or on Twitter @juliaoftoronto