Follow-up on deceased organ donation

Earlier this month, I wrote a post trying to estimate how many people would have to be added to the deceased organ donor registry to result in one additional actual organ donor. I concluded that "the impact of adding a million people to the organ donor registry is likely less than 10 additional deceased organ donors per year, and probably quite a bit smaller than that." Looking at the entire lifetime, rather than one year, I calculated that adding a million people to the donor registry would lead to less than 1,400 extra organ donors.

I pointed to one previous estimate of that value that predicted a figure about 3 times higher, but I hadn't been able to find any other estimates.

During the past month, I looked into extending my estimates to try to calculate the cost-effectiveness of organ donation outreach efforts, and a couple of the papers I looked at calculated estimates for the value I was trying to estimate earlier this month.

Howard and Byrne 2007 try to calculate the value of a marginal registrant, assuming that registrants have differential donation value based on their mortality risk. (The idea driving this is that registered organ donors appear to die substantially less often in ways that allow their organs to be donated than non-registered folks do, suggesting that those people who are easiest to register may not be those who matter the most as donors.) They do a fairly sophisticated calculation that incorporates this issue, registrant age, discounting for future benefits, and family consent policies. They find:

When families are given the right to refuse organ recovery from a registered donor, society should be willing to spend up to $840 for an 18- to 34-year-old registrant [based on a value of $1,087,000 per an organ donor, assuming QALYs are worth $100k]. Because some families will always refuse consent and others will always grant it, the value of registering a donor under a regime of familial consent is always lower than the value under a regime of first-person consent.

Doing the quick division, this means that they estimate the lifetime increase in donations (having already discounted future benefits) for a million marginal 18-34 year old registrants as 840/1.087 = 773 additional donors. That's about half my lifetime estimate from the previous post (1,400), which can mostly be explained by the fact that it's discounted to present value (discounting 30 years at 3% removes 60%). Actually, the authors use an extremely high assessment of the increase in family consent rates associated with registration (45%) based on the Simonoff 2001 paper I discussed in my previous post. They report an alternative scenario as well:

Estimates of the value of registrants under a familial consent regime are probably biased upward. Positive attitudes toward donation are shared by registrants and their families. Thus, the figures from Siminoff and Lawrence almost certainly overstate the impact of registration on consent rates. If registration increases familial consent rates by only 20 percentage points, instead of 45 percentage points, then the value of a registrant is $373. [My estimate in the previous post was based on an increase of 31 percentage points, in between the 20 and 45 estimates.]

This $373 estimate translates to 343 additional discounted lifetime donors per million additional marginal registrants.

Beasley et al. 1999 tried to estimate what the likely returns to an organ donor registry would be, prior to widespread adoption, and turns out to be weirdly prescient, despite a rather crude approach. Reporting that 70% of people claimed to want to donate their organs in a survey, whereas families only consented to donation in 50% of cases, the authors predicted that a registry could lead to to one additional donor for every 5 potential organ donors (i.e. people who die in appropriate ways) registered (70%-50% = 20%). Multiplying out the annual number of potential organ donors, they estimate that:

The number of registrants needed to attain one extra donor above what would have occurred without a registry is given by: 16,700/.2 = 83,300. If we take into account that portion of the donor pool composed of cases that are not identified by hospital staff or not approached for donation by hospital staff (some 27% of the total pool) the number of registrants needed for each additional donor at the margin would be 83,300/.73 or 114,200.

One additional donor per ~100k additional registrants (per year) is just about 10 donors per million additional registrants, which is about what my algebra in the last post suggested as an upper limit for the yield on registrations.

Cost-effectiveness

In the conclusion of my previous post, I tentatively suggested that the organ donation community wasn't spending its money and energy as well as it could be:

My vague impression is that the organ donation community spends a huge amount of its time, money, and effort trying to get more people to sign up as organ donors. My analysis here has been tentative and exploratory, but I think the lack of stronger empirical evidence for an actual impact of those registries is startling, and that it would be worth a fuller exploration by people with more subject-matter expertise than I have. Given that there are a lot of other strategies for improving organ donation, continuing to focus on donor registration outreach seems like it may be leaving a lot on the table.

The key assumption there was that the organ donation community was spending most of its money on trying to get people to register as organ donors. But a quick search reveals shockingly little support for that hypothesis. The total spending by Donate Life America, the big national organ donation promotion organization, was only $1.3 million in 2011 (PDF). Donate Life California spent ~$500k in 2011 (PDF). By contrast, the New York Organ Donor Network spent ~$30 million (PDF), but they're the organ procurement organization, which means that they do all the work around actually harvesting, transporting, etc. organs, in addition to trying to get people to register as donors.

At a budget $1.3 million/year, if Donate Life America is getting one additional donor a year, they're basically breaking even in terms of social impact.

One other interesting datapoint that I heard from a friend this morning is that some folks in the organ donor community--well, one acquaintance of his--estimates that the cost of registering a donor is typically $1.75. At that price, organ donor registries seem like quite a good buy. An organ donor is worth ~$1 million, and we estimated the upper limit on the yield per million additional registered donors as 10 donors/year (though probably substantially fewer). Still, at that cost, we're talking about a potentially really high return on investment, and all the action in trying to assess that ROI will be in the region of impact that's too small for the statistical techniques I used in the last post to yield anything of interest.

For instance, say we're considering whether to significantly increase funding or all the "Donate Life" organizations, which (by hypothesis) spend ~$2 per marginal registrant (and don't face radically increasing costs as they try to get more registrants). That $2 is (pretty easily) worth it as long as one in every ten million marginal registrants end up donating each year. Since the statistical techniques I described in the last post could really only detect a bump of four donors per million additional registrants (or 40 per 10 million), we're massively under-powered to detect the kind of effect size that would matter for practical considerations.

The fact that it only costs <$2 per registrant and folks aren't up in arms over the lack of funding for organizations working to improve registration actually suggests to me that the marginal impact per registrant is probably at the lower end of this spectrum (i.e. closer to 1 additional organ donor per 10 million registrants per year, for the general reasons laid out in this GiveWell blog post), though I don't have the data to really answer that question.

Facebook and organ donation: does getting people to sign up as organ donors actually make a difference?

A year ago today, Facebook launched a PR blitz announcing that they were making it possible to publicize your organ donation status on Facebook. Donate Life America, the national coalition of state organ donation organizations, made it pretty clear that Facebook was launching a concerted PR effort:

In an exclusive interview with ABC News’ Robin Roberts on “Good Morning America” this morning, Facebook founder Mark Zuckerberg announced the new initiative and became one of the first Facebook users to sign up to donate on the social network. Tonight Facebook’s COO and one of America’s most powerful businesswomen Sheryl Sandberg will sit down exclusively with Diane Sawyer. ABC News affiliates, ABC News Radio, Yahoo! and ABCNews.com will also feature coverage of the exciting new initiative. ESPN will be running two powerful organ donation stories throughout the day on SportsCenter that encourage organ and tissue donation.

Aaron Swartz, Kieran Healy and I had a short discussion about the prospects for an effect on Twitter. I was optimistic, but Healy said, "public support for donation hasn't been the bottleneck for a very long time."

The best data I've found on the impact of Facebook's efforts comes from a CBC news article from June 25th:

The Facebook drive had an immediate effect. In the first few days, more than 100,000 people changed their status to indicate they were willing to be donors.

To be official, a willing organ donor needs to sign up with their own government's donor program, so Facebook also provided direct links to local donor registries. Donate Life America (DLA), a non-profit dedicated to raising donor awareness, subsequently reported an average 1,000-per-cent increase in online donor registrations across the U.S. over the six days following the addition of the donor feature.

To put that in concrete terms, during that time period 33,406 people legally registered to be donors; other years the number of signups was much smaller – in 2011 for the same time period, it was 3,288. Since then, the signup numbers have stabilized at around 1,150 per day, which was still more than double the historical daily average of 548.

So the Facebook effort led some people who probably weren't on the list before to sign up as organ donors - if the pace kept up, which seems unlikely, Facebook would have led to around 200,000 additional people joining the list this year. But does getting people who aren't yet donors to sign up make much of a difference?

This may seem like a crazy question, so some context is useful: if you die in a way such that your organs could be donated, even if you're not a registered donor, the "organ procurement organization" (OPO) will still ask your family if they'd like your organs to be donated. The OPOs are good (and getting better) at asking, and most people do support organ donation, so they actually get permission from most families that are asked when their loved one wasn't a registered donor. Conversely, in most cases, even if you're registered as a donor, if your family says they don't want your organs donated, the OPO will follow their wishes (this happens pretty rarely, luckily). So, structurally, it's actually not all that obvious that getting more people to sign up as organ donors will make much of a difference, especially if the people you get to sign up are the ones whose families already support donation (which seems pretty likely).

The ideal way to address this problem would be to run a large randomized control trial: spend a bunch of money on randomly giving specific people messages about registering as donors, hopefully getting a big difference in registration rates between treatment and control groups, and then follow them for years to see if the treatment group actually ends up donating at higher rates. This would be expensive, time consuming, and difficult, and to my knowledge it's never been tried.

There are two easier strategies we can pursue to try to identify the impact of marginal donor registry sign-ups, though they won't have the same rigor as the RCT:

1. compare the actual donation rates of people who are eligible to donate upon death who are and aren't registered donors
2. comparing states based on the proportion of registered people and the proportion of eligible donors who actually donate. The data and code for my analysis are on github here and figshare here. Feel free to email me if you need any help interpreting; I didn't do much to document well.

Neither of these strategies is as good as an RCT, and in particular both will be unable to distinguish whether registration efforts are just leading more people who would donate anyway to sign up on the list, but they still provide useful information.

The truly rich give more as a portion of income

Breaking radio silence to report that I think that this Ken Stern column in the Atlantic that has been making the rounds on Twitter and Facebook is wrong.*

He makes a few arguments, but the headline and tagline sum it up pretty well: "Why the Rich Don't Give to Charity: The wealthiest Americans donate 1.3 percent of their income; the poorest, 3.2 percent. What's up with that?"

A few things I find really problematic about this:

• He goes on to say, not that the "wealthiest Americans" donate 1.3 percent of their income, but that "those with earnings in the top 20 percent" do so, while it's the bottom quintile of income, not "the poorest" donating 3.2 percent. Given that the piece opens with a bunch of stories about giant gifts by billionaires, you'd think the article was actually about philanthropy by the super wealthy; it is not.
• He never actually cites his source for this claim, and I spent more than an hour looking and couldn't find any evidence for it. His book (fn 13, pg 236) points to this McClatchy article making a similar argument for giving in 2007, based on data from the BLS Consumer Expenditure Survey, but I couldn't find data from them for charitable contributions in 2011, which is when Stern says his numbers come from. I think there's a decent chance that he's not adjusting for the fact that the poor may give proportionally larger gifts at lower rates (leading to lower overall average contributions; see pages 10-12 of pdf here).
• Income in general might not be the right way to think about charitable giving; it might make a lot more sense to talk in terms of wealth. Elderly people with low incomes might be giving large amounts out of their wealth, juking the stats. (That said, if we did use wealth as the denominator, a lot of poor people would be giving undefined portions of their wealth, so it's complicated.)

I complained about this and Rob Reich pointed out that Stern is right that the super rich aren't necessarily as generous they could or should be, and that much of the philanthropy they conduct is likely spent on frivolous projects. I don't object to that, and I agree with this Tom Paulson post about the Giving Pledge:

The Giving Pledge initiative was launched two years ago by Bill Gates and Warren Buffett to urge the wealthy of the world to give (or, well, actually just ‘pledge’ to give) at least half their wealth away. Today, 11 more of the super-rich have made the promise. So that means the number of the world’s super-wealthy who have agreed to sign on to this (unenforceable) pledge to give just half of their wealth to a good cause when they die has now reached, after two years, a grand total of 92. There’s something like 1,000 billionaires and tens of thousands (or more) multi-millionaires out there.

The Giving Pledge seems like a great initiative, but it's not all that onerous in its terms, and it's kind of crazy how (s)low take-up has been.

So I think that this is true and totally fair, but it definitely doesn't show that "the rich are less generous than the poor."

In fact, when we look at results that include the truly rich, it's clear that they do give more (source PDF):

That chart doesn't show it as much (and the authors argue that it doesn't exist), but people often talk about a U-shape distribution of giving, with both the poor and the rich giving more as a portion of their income. John List does a nice job summarizing what might be going on (PDF here):

Intriguingly, giving as a percentage of household income is U-shaped. Households with incomes between $20,000 and 40,000 give 5 percent of their income to charity. As incomes grow to about $75,000, gifts fall to 2 percent of income, but then rise slightly to 3 percent. Though I have limited data on the donations of the wealthiest members of the population, the Center on Philanthropy (2007b) has reported that among those with net worth between $1 million to $5 million, the average donation to charity in 2005 was more than 5 percent of average income.

What might be causing this U-pattern of giving? The usual explanation is that poor households tend to give to religious causes. This is indeed part of the story: as shown by the data in Table 2, religious giving represents a substantial fraction of giving for low-income households but a lesser fraction for wealthy households. Another proposed explanation in the literature is that younger people with low current incomes expect their wages to rise in the future, which makes the current charitable gifts more affordable. But this does not seem to be the case if one considers the data on age of giver in the middle panel of Table 2.

Another explanation for a U-shape in charitable giving is that a large fraction of the high-percentage donors reporting low incomes are wealthy. When one looks more closely at giving by donors in the bottom income class, it is largely driven by the 5 percent of households that contribute one-tenth or more of their after-tax income. Many of these high-commitment households are high-asset, retired members of the population who are in effect making their contributions out of accumulated wealth rather than out of current income (James and Sharpe, 2007). Taken together, these data patterns suggest that although fewer poor households give money to charity compared to other income classes, the ones that do contribute give much more as a percentage of income than any other income class.

Table 2 also reveals that even though high-income givers are giving less of their household income, the total amount is substantial: households with incomes heir household income, the total amount is substantial: households with incomes exceeding $130,000 give more than $4,500 annually to charity. This begs the question: how much do the mega-wealthy give? Havens and Schervish (1999) show that households in the top 4 percent of the income distribution provided over 40 percent of the total charitable contributions in 1995. Furthermore, they report that the households in the highest 1 percent of the income distribution (annual income above $250,000 in 1994) provided 33 percent of the total charitable dollars in 1995. Auten, Clotfelter, and Schmalbeck (2000) note that the wealthiest 1.4 percent of decedents are responsible for 86 percent of charitable giving from bequests. A more recent figure comes from a Bank of America “High Net Worth Philanthropy” study of giving conducted by the Center for Philanthropy at Indiana University in 2005, which found that the wealthiest 2.3 percent of givers gave 56.5 percent of total donations

Sounds right to me. Whether the distribution is U-shaped or just upward sloping, I just don't see the case for saying the rich give less as a portion of income.

One final note: regardless of what the true relationship between income and charitable contributions is, the thing that always surprises me about these stats is how low they are in an absolute sense. The majority of Americans are in the top 10% of income globally--we're all rich--so it's a little crazy that we're complaining about the differences between 1.5% and 3% of private spending going to charity. It's not crazy and something's better than nothing, but I feel like the right response to these numbers is to say "we should all be giving more" rather than "the rich aren't giving enough."


*He's in public a lot right now plugging his new book, With Charity for All, which discusses GiveWell (where I work) in a pretty positive light. I like the book, I just found this column frustrating.

Living organ donor narratives

Cristy Wright donated a kidney to her sister three years ago, and it went badly. Her sister was back in surgery within 24 hours of the operation, and within a week, the kidney--which she had affectionately nicknamed Trixie--had to be removed and thrown away. She sought support, but when she talked to her surgeon, he never acknowledged her loss or referred her for counseling. Her Living Donor Coordinator never returned her call.

Cristy feels betrayed by a medical system that should have been there to protect her. She never received adequate information about the risks of transplant surgery, even though she at one of the best hospitals in the country. She suffers from post-traumatic stress disorder. In an attempt to better inform other donors, she started the website www.livingdonors101.com (which offers useful, though IMO gratuitously negative, information about the risks of donation).

I came across Cristy's story in a recent symposium on first person narratives of living organ donation (though we've encountered each other before*) in the journal Narrative Inquiry in Bioethics (i.e. the editors compiled a number of first person narratives from living organ donors and published them all together in this issue of the journal). As I began reading about the donor's experiences, I was blown away by how negative they were. A brief litany of horrific experiences (far from exhaustive):

• A 59-year old man donated a kidney to his 68-year-old husband, and then had to take care of him while they both were recovering from surgery. That is no mean feat, especially at their ages. At one point, they had to spend thousands of dollars out of pocket to purchase the drugs they both needed because there was some problem with their insurance.
• A woman donated to her brother, but like Cristy's the transplant was unsuccessful and had to be removed within a week or surgery. She had been under the mistaken idea that her kidney would be able to be used for research, and was devastated to learn that it had to be thrown out.
• A woman donated to a former lover and boss. Six months after surgery, when she went back to the transplant center to complain about her permanent nerve damage, she found out that 10% of their donors ended up with nerve damage like hers, and a few months later, they voluntarily shut down their transplant program because of "adverse events." She now suffers from chronic kidney disease and depression.

Who were these people, and how come I had never heard of them? I've talked to 9 other (living) kidney donors, and none of them had experiences anywhere near this bad. (And the living liver donation narratives were even worse, but I know far less about that...)

Disruption in the nonprofit sector, or, why the next CEO of Guidestar has a great opportunity

Note: there are bunch of relevant disclosures at the bottom of this post.

On Monday, "philanthropy wonk" (and PACS Visiting Scholar) Lucy Bernholz blogged about a proposal in the Knight News Challenge which is aiming to digitize and make public IRS 990 tax forms. These are essentially the only public records on charities, and they cover basics like, "How much do you spend on programs and fundraising? How much was the CEO paid?" (CharityNavigator, the organization everyone thinks I work for when I mention GiveWell, uses the data from these 990 forms to rate the financial performance of charities.) Lucy and I had a Twitter exchange about her post that got me thinking, and I wanted to expand on it a little bit.

A note about the proposal in question: Carl Malamud, who was apparently responsible for getting the SEC to provide corporate filings free online, proposes a $500,000 or $600,000 budget for a project to "Put 10 years of IRS Form 990... online in bulk, [and] extract 75 million fields of data." Lucy commented, "Look at the price tag - $600K - amazing to think what could be done for such little money."

What I initially said to Lucy was, "couldn't GuideStar just do this overnight?" GuideStar is the current hub for nonprofit financial information; they digitize hundreds of thousands of 990s a year and serve as the data backbone for a variety of different initiatives in the sector. Lucy responded by pointing out that (a) they haven't yet, and (b) it would be counter to their business model to do so.

The Mathematica Evaluation of Charter Middle Schools

The most rigorous study yet on the average impact of charter schools came out in June 2010. I remember that study, which just about everybody else in the world seems to have forgotten, because for the past two years it has been the thing I pointed to when I said that I wanted to start blogging.

I now find myself in the unfortunate position of writing my first blog post on this study, having found this morning that the press reception to it at the time was pretty much crickets. The most extensive article on the evaluation was a brief piece from CSM.

Anyway, the authors of the study emphasized that the average effect of the charter schools was zero, but with significant heterogeneity: charter schools that served poor kids in urban areas were far more likely to improve their test scores, while charter schools that served wealthy suburban kids tended to have negative effects on their test scores. The pretty clear interpretation of this is that charter schools serving poor kids are better than charter schools serving rich kids.

The point I've been wanting to make for the last two years (aren't you just waiting with baited breath?) is that the study doesn't show that at all. Your faithful correspondent was one of the half-dozen people lucky enough to be sitting in a webinar in July 2010 to find that out.