ORGANIZE.org: Using Health Data to End the Organ Donor Shortage
The liberation and open accessibility of health data has allowed for people to mobilize and improve health systems in ways that were not possible before. One such organization, ORGANIZE.org, is leveraging health data to end the organ donor shortage by applying smarter technologies, building more creative partnerships, and advocating for data-driven policies. We spoke with co-founders Greg Segal and Jenna Arnold about their organization and vision for the future.
What was your inspiration for ORGANIZE?
When Greg’s was a sophomore in college, his father got very sick and ended up waiting five years for a heart transplant. What makes organ donation unique among medical crises is that the cure already exists: Greg’s father just needed a heart. The problem was about business and distribution; only about 15% of New Yorkers were registered as donors.
There seemed to be a real injustice in the idea that his healthcare problems were the result of societal failures rather than medical ones.
For Jenna, she was inspired by the idea that this was an issue that could be solved. Unlike other causes, like climate change or global poverty, there’s a concrete end goal, and it’s really not that far off.
Organ donation is an area most of us take for granted, but the reality is that the approach and systems have not changed much in decades. Where are the biggest opportunities to improve the system? Are there significant barriers to overcome (e.g., structural, legal, IT, etc.)? How do we compare to other nations?
There’s no doubt that if we started fresh with a new system, it would look very little like the one that exists today. There are 52 disparate state registries (including DC and Puerto Rico) that weren’t built interoperably, so if Jenna registered during undergrad in Florida, or growing up in Pennsylvania, the New York organ procurement agency won’t automatically find that registration unless they were given explicit instructions to look there.
The other main issue is that we have very few public-facing registration portals; currently 95% of registrations occur at the DMV. ORGANIZE is building integration into social media, e-comm, and other platforms to let people register in the places they already spend most of their time, and on the platforms they’re already comfortable sharing information. Once this is in place, we’ll launch strategic advocacy campaigns targeted at key demographics with the objective of shifting the narrative around organ donation.
The barriers seem like they are legal, and certainly there may be some legal routes to improvement, but because so many states run their own systems it would be very difficult to drive total coordination legislatively. Instead, we’re building tech solutions to achieve the same outcome.
Spain is generally considered the gold standard for organ donation, and many people assume that’s because they have an opt-out system of donation (versus opt-in in the US), but it’s also largely due to a cultural support of organ donation and other in-hospital practices. Israel recently implemented a very interesting system that gives preferential ranking on the transplant waiting list to someone who is a registered donor versus a medically similar patient who is not registered. But the US has a real opportunity to be a global leader in this with innovative tech tools, and to build something that can easily be replicated globally.
Donor registration is key here to the approach. Could you share some of the big ideas you have to better drive registration? What numbers should we be targeting as a nation?
We want to democratize the registration process. One thing Greg always says is that, while his dad was sick, he wishes he could have done more to help, but the current system really makes registration drives inaccessible for anyone other than DMV employees. One of ORGANIZE’s primary goals is to allow more actors and distribution partners in the space, whether they be major corporations or private individuals. We want to put the power in the hands of the people who most want to drive results.
There’s plenty of room to increase donation rates; 90% of America supports organ donation, yet only 40% have registered, which means there are 150MM Americans who support the cause but still haven’t registered. But we’re most focused on increasing the number of transplants rather than registration rates. That sounds like a subtle distinction, but only about 1% of deaths medically qualify for donation, so the key innovations will be in registering the right people, not just in registering more people.
We’re also very interested in supporting living donation. We’d love to allow Americans to opt-in to having their deceased donor organs start living donor chains, so that every deceased donor can effect 10 or 15 kidney transplants, rather than just two, in addition to donating their hearts, lungs, and livers.
Where are the biggest opportunities to better share and coordinate information between various stakeholders in the system?
Streamlining access between state registries is certainly helpful, but we’re most interested in the communication channels between citizens and the system. Everyday Americans are really the most important stakeholder in all of this, and yet are the one least considered when we talk about the system.
ORGANIZE is making it easier for Americans to express their wishes, both into the official registry itself, and also with families via social media. We’re also trying to make this a more accessible area for academic partnerships. We’ve been working with Judd Kessler, a behavioral economist at Wharton who studied under Nobel Prize-winner Al Roth. Organ donation is considered to be the perfect vehicle academically for understanding pro-social behavior, but data access is extremely limited with a DMV-driven system. There’s a whole new universe of best practices to develop, which can be applied to everything from voter registration to charitable giving. One of our goals is to enable that.
Have you been able to estimate the number of lives that could be saved if you are successful?
One life would be enough. But our goal is to turn 7k donors into somewhere between 10 – 12k, each with 3.5 organs, and to use those kidneys to kick off living donor chains, too. It’s also important to realize that even absent improvements in the number of donors, building tools to identify donors more quickly will lead to better transplant outcomes – and more life-years for the recipients.
Because not all deaths lend themselves to medically qualifiable donations there is ceiling on what an optimized system looks like, but if we hit our goals, we can flip the supply/demand for organs like hearts and start shrinking waiting lists rather than growing them.
You have an ambitious mission and I am sure many readers would like to help. What can they do to support you and ORGANIZE’s important mission?
First and foremost, please consider registering as a donor, and make sure you know your loved one’s wishes.
As for ORGANIZE, like us on Facebook, follow us on Twitter, and email us at firstname.lastname@example.org for any and all partnership opportunities. We’re always looking for distribution partnerships with major brands and large tech platforms.
The above post is cross-posted from the Health Data Consortium Blog. The U.S. Department of Health and Human Services is a founding member of the Consortium.