August 2011


by George Taniwaki

Some of you may be familiar with the story of Chaya Lipschutz. In 2005, she donated her kidney to a stranger after reading an ad in the newspaper. Afterwards she started a free kidney matchmaker service. Among the ways she helps her clients find a donor is through the use of classified ads. Below is a typical Craigslist ad she ran for one of her clients.

ChayaLipschutz

A typical kidney matchmaker Craigslist ad. Image from Chaya Lipschutz

Items to include in the ad

The key points that make this simple posting a winning ad are:

  1. A catchy headline
  2. Emphasis that donating a kidney may save a life
  3. Description of the problem (what your life as a patient is like)
  4. Statement that live donation is generally safe
  5. If the patient has O-blood type, request a matching donor (otherwise this isn’t important, unmatched blood type donors can enter a kidney exchange)
  6. Call to action (remember to take it one step at a time, you want the reader to commit to getting tested at the transplant center, do not ask to commit to the actual donation)
  7. A photo of the patient (in this case of the matchmaker) that is well-lit, in focus, and showing a sincere smile

Posting an ad on Craigslist

To post a classified ad seeking a kidney donor on Craigslist, follow these steps:

  1. Make sure you have an email address that works so that you can communicate with any responders to the ad
  2. Point your web browser to http://www.craigslist.org.
  3. If this is your first time at the site, you will need to select a city, state, country
  4. If this is your first time at the site, you will need to create an account, which will require an email address and a password (do not use the same password that you use to log into your email account) Verification of your account will be sent to your email address
  5. From the main page, select post to classifieds
  6. Under What type of posting is this, select community
  7. Under category, select volunteers
  8. Under choose the area nearest you, select your city (don’t worry about this, your ad will be visible to all users)
  9. On the classified ad form, under posting title, type in the catchy headline
  10. Under specific location, type in the city your transplant center is in
  11. Under reply to, type in your email address and select anonymize
  12. Under posting description, type in the details of your need
  13. No NOT select “ok for other to contact you…”
  14. DO select “OK to distribute this charitable volunteerism opportunity…”
  15. When everything looks ok, click Continue
  16. On the image upload page, click Browse… and select any images from your hard drive you want to include
  17. When you have finished, click Done with images
  18. On the confirmation page, check your ad. If it looks correct, click  Publish (or Continue)
  19. You will receive an email, click on the link
  20. On the Terms of Use page, click Accept the terms of use
  21. Your post is now on Craigslist. If you need edit, delete, or update your listing, simply log into your account

****

To learn more about Chaya Lipschutz and her effort to match kidney patients with potential donors, visit KidneyMitzvah.com. Ms. Lipschutz is very enthusiastic about helping patients and about recruiting kidney donors and it shows in the design of her website.

Thanks to Harvey Mysel of Living Kidney Donors Network for pointing out this classified ad to me. For more ideas on finding a donor, see my Kidney patient guide.

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[Note: This is the third blog post comparing opt-in and opt-out organ donor registration. The series starts here.]

The previous blog post argued that switching from opt-in to opt-out could increase the number of people on the organ donor registry but could actually reduce the number of organs recovered.

That is because an opt-out process creates ambiguity about the intent of those on the organ donor registry. This would make the Uniform Anatomical Gift Act (UAGA) harder to enforce.

One way to avoid this problem is to couple the use of an opt-out-donor registry with increased training of clerks at the DMV to inform each customer that they will be added to the registry unless they opt-out. In addition to training costs, there will be increased labor costs since each customer transaction may be about a minute longer as the clerk explains what the organ donor registry is and sells the benefits of organ transplantation to the customer.

This extra effort to educate the public is needed to get implicit consent from the driver. Unlike presumed consent where the customer is never told that a decision is being made for them, implicit consent creates a true decision. Unlike mandated choice where the customer is forced to make a cognitively complex choice in a short time span, implicit consent relies on framing to make the default option (the one most people will pick) the one that is most beneficial for society.

Using the same hypothetical data presented in the prior blog posts, I have created a table showing the organ recovery rate when combining opt-out with implicit consent. Assume that an opt-out registration system results in 88% of drivers registering to be organ donors (same rate as in table 2 of that blog post). Of these, the OPO is able to get 99% of families to cooperate (same as in table 1). The OPO does not approach the families of patients who were on the opt-out list (same as in table 2). The overall organ recovery rate is 87%, significantly higher than the 81% rate in the opt-in case or the 79% rate for opt-out without implicit consent. This appears to be a big win.

    Implicit conse nt case             Patient on organ registry
Yes No Row total
Family
agrees to
Yes 87
(99%)
0
(0%)
87
donation No 1
(1%)
12
(100%)
13
Col. total 88 12 100

By combining opt-out with implicit consent, 88% of drivers register and 87% of organs are recovered

What impact could the combination of opt-out and implicit consent make in the United States? That is difficult to predict since no state has attempted to implement them together. Legislation was introduced to implement opt-out and presumed consent in New York last year by an assemblyman whose daughter had received two kidney transplants. But the bill never made it out of committee. (See debate in New York Times May 2010.) Similar legislation was introduced in Colorado earlier this year but was withdrawn after public protests and consultation with Donor Alliance, the local OPO.

Why isn’t the combination of opt-out and implicit consent gaining political traction in the U.S.? Most likely it is because the training required to implement implicit consent correctly would be expensive. Even with training, at least one unwilling donor family will probably request an injunction against the OPO. The potential result of this litigation was described in the last blog post. The resulting media coverage and lobbying would likely put pressure on the state legislature to eliminate the opt-out nature of the registry. It could also cause them to revoke the UAGA. This could make it harder for OPOs to recover organs than before the switch to opt-out since they currently can recover organs without consent of the family under opt-in.

Finally, if the driving public feels it is being coerced into becoming donors, it may result in falling donation rates (higher opt-out rates) and reduce trust in the healthcare system. Overall, the combination of opt-out and implicit consent just doesn’t seem like a winning strategy to increase organ recovery rates.

Much thanks to thank Alexandra Glazier, Vice President & General Counsel at The New England Organ Bank, for clearly explaining that adopting an opt-out registration process does not automatically result in adopting presumed consent. Each issue needs to be analyzed separately.

In the previous blog post, I showed how the registration of organ donors using a Boolean variable leads to some drivers to be misclassified. I also showed how requiring drivers to opt-in to the donor registry causes less severe types of misclassifications than opt-out.

Now I will discuss how opt-out can result in uncertainty in the composition of drivers listed in the registry. This uncertainly can impact the behavior of organ procurement coordinators and family members.

Role of certainty in interactions between counselors and family

In states that maintain a donor registry, they share the list of names on the registry with the organ procurement organization (OPO) that is responsible for recovery and distribution of organs for transplant. If a patient dies under conditions that allow the organs to be recovered, an organ recovery coordinator at the OPO will see if the patient’s name is on the organ registry.

Under opt-in, if the patient’s name is on the registry the coordinator can be fairly certain the deceased patient wanted to be a donor (categories 1a and 1b as defined in the previous blog) and can confidently tell the family this and proceed with recovery. Under the Uniform Anatomical Gift Act enacted in most states, a gift by a donor cannot be revoked by the family.

If the patient’s name is not on the registry, the intent of the patient isn’t known. Perhaps the patient wanted to donate (category 3a), didn’t want to donate (2b or 3b), or wanted the family to decide (2a or 4). The coordinator can say the patient’s wishes were not known and politely request the family to make an organ donation on behalf of the deceased patient.

Under opt-out, there are more categories of drivers included in the registry. This reduces the certainty in the composition of the donor registry. This is true even if no drivers are misclassified (i.e., no drivers fall into categories 3a, 3b, or 4), This uncertainty will have an impact on the behavior of the coordinators.

Specifically, if the deceased patient’s name is on the registry, the coordinator cannot be certain the deceased patient wanted to be a donor. She must rely on presumed consent. However, if the family complains that it was not the deceased patient’s intent to be a donor, then the ambiguous nature of the composition of the registry may lead to a delay, which will make recovery impossible. If the OPO pushes the issue, eventually, a court case may resolve the issue, but if the ruling is in favor of the patient’s family, then the entire registry is placed at risk.

Conversely, if the patient’s name is not on the registry, then having the coordinator approach the family to request a donation is also problematic since a donation would require the family to override the wishes of the deceased. If that is allowed, then the wishes of the deceased should be allowed to be overridden if she is on the organ donor registry as well. Again, if the OPO pushes the issue, the organ donor registry is placed at risk.

A hypothetical example of outcomes

Let’s look at some hypothetical numbers to illustrate a possible outcome. In the first table below, the state has an opt-in registration system and has a 64% registration rate. (This is very high, but is achieved in Washington, the state where I live.) The OPO approaches the family of every patient who dies under conditions that allow the organs to be recovered. For patients on the registry it works to enforce the UAGA and gets 99% of families to cooperate in time. For patients not on the registry, it works hard to persuade the family to donate and gets half to cooperate. Overall 81% of organs are recovered.

Opt-in case            Patient on organ registry
Yes No Row total
Family
agrees to
Yes 63
(99%)
18
(50%)
81
donation No 1
(1%)
18
(50%)
19
Col. total 64 36 100

Under opt-in, 64% of drivers register to be donors and 81% of organs are recovered

Now suppose that the state switches to an opt-out registration system and the registration rate rises to 88%. However, the cooperation rate among families drops from 99% to 90%. Also, the OPO does not approach any of the families of patients who were on the opt-out list. Overall, the organ recovery rate drops to 79%, lower than it was before the switch. Naturally, I set the numbers to make my case, but it illustrates that switching from opt-in to opt-out will not on its own automatically ensure that donation rates will increase.

Opt-out case             Patient on organ registry
Yes No Row total
Family
agrees to
Yes 79
(90%)
0
(0%)
79
donation No 9
(10%)
12
(100%)
21
Col. total 88 12 100

Under opt-out, 88% of drivers register to be donors but only 79% of organs are recovered

Mandated choice

As mentioned in the previous blog entry, there is another option besides opt-in and opt-out called mandated choice. Under mandated choice, the state wants to eliminate the last categories 3a, 3b, and 4 (driver choice undeclared or driver undecided) that create ambiguity. Thus, the law requires the DMV clerk to ask every driver to declare a choice. (It’s not clear what happens if the driver refuses to make a choice or if the clerk forgets to ask or forgets to record the choice.) Several states have tried it, but have given up and returned to opt-in. Currently, only California is experimenting with it, see Jun 2010 blog post.

Texas, which had about a 15% registration rate with opt-in, increased it to about 20% with mandated choice. Unfortunately, I can’t find any data to show if overall organ recovery rate rose or fell after this change. However, the state has abandoned mandated choice, so my guess is the OPOs in that state either saw a drop in donation rates or feared one would occur and lobbied for the return to opt-in.

How opt-out and mandated choice may reduce donation rates

Why has mandated choice failed, and why could opt-out cause donation rates to fall? I think a lot of it may be because of people’s fear of death. Signing up to be an organ donor while applying for a driver’s license is an admission by the registrant that she may die in an accident and needs to make a decision about the disposition of her organs in the event that happens.

Under the current opt-in process, those who are not afraid of death opt-in. Those who are afraid don’t state their preference. For those who don’t opt-in, the decision to donate is still available later to the family. Under opt-out, people who are willing to donate (or let their family decide) but are not willing to admit they may die will opt-out. This is a firm decision, precluding the family from making the donation later.

In the next blog post we will explore ways to make opt-out compatible with individual choice and consent.

Nearly every state in the U.S. maintains a registry of people willing to become deceased organ donors. The intent of an individual to be a donor is stored as a Boolean value (meaning only yes or no responses are allowed) within the driver’s license database. Nearly all states use what is called an opt-in registration process. That is, the states start with the assumption that drivers do not want to participate in the registry (default=no) and require them to declare their desire (called explicit consent) to be a member of the registry either in-person, via a website, or in writing.

One of the frequent proposals to increase the number of deceased organ donors is to switch the registration of donors from an opt-in system to an opt-out system. In an opt-out system, all drivers are presumed to want to participate (default=yes) and people who do not wish to participate must state their desire not to be listed.

Let’s look at the logical and ethical issues this change would present.

Not just a framing problem

Several well-known behavioral economists have stated that switching from opt-in to opt-out is simply a framing problem. For instance, see chapter 11 of Richard Thaler and Cass Sunstein’s book Nudge and a TED 2008 talk by Dan Ariely using data from papers by his colleagues Eric Johnson et al., in Transpl. Dec 2004 and Science Nov 2003 (subscription required).

The basic argument is that deciding whether to donate organs upon death is cognitively complex and emotionally difficult. When asked to choose between difficult options, most people will just take the default option. In the case of an opt-in donor registration, this means they will not be on the organ donor registry. By switching to an opt-out process, the default becomes being a donor. Thus, any person who refuses to make an active decision will automatically become a registered organ donor (this is called presumed consent). This will increase the number of people in the donor registry without causing undue hardship since drivers can easily state a preference when obtaining a driver’s license.

However, these authors overlook two important practical factors. First, switching from opt-in to opt-out doesn’t just reframe the decision the driver must make between two options. It will actually recategorize some drivers.

Second, it changes the certainty of the decision of those included in the organ registry, which affects the interaction between the organ recovery coordinators at the organ procurement organization (OPO) and the family member of a deceased patient.

There are more than two states for drivers regarding their decision to donate

Note that the status of a driver’s intent to be an organ donor is not just a simple two-state Boolean value (yes, no). There are actually at least three separate states related to the intension to be an organ donor. First, upon the driver’s death, if no other family members would be affected, would she like to be an organ donor (yes, no, undecided). Second, has she expressed her decision to the DMV and have it recorded (yes, no). Finally, would she like her family to be able to override her decision (yes, no, undecided). The table below shows the various combinations of these variables.

Category

Driver would like to be organ donor
Driver tells DMV of decision
Driver would permit family to override decision

Comment

1a Yes Yes No Strong desire
1b Yes Yes Yes or Undecided Weak desire
2a No Yes Yes or Undecided Weak reject
2b No Yes No Strong reject
3a Yes No Yes, No, or Undecided Unrecorded desire
3b No No Yes, No, or Undecided Unrecorded reject
4 Undecided Yes or No Yes* Undecided

*No or Undecided options make no sense in this context

Opt-in incorrectly excludes some drivers from the donor registry

Now let’s sort these people into two groups, one that we will call the organ donor registry and the other not on the registry.

Under the opt-in process, only drivers in categories 1a and 1b are listed on the organ registry. These drivers have given explicit consent to being on the registry. Drivers in categories 2a, 2b, 3a, 3b, and 4 are excluded from the registry. Thus, we can be quite certain that everyone on the registry wants to be a donor. (There is always a small possibility that the driver accidentally selected the wrong box, changed their mind between the time they obtained their driver’s license and the time of death, or a computer error occurred.)

In most states the drivers not on the organ registry are treated as if they have not decided (i.e., as if they were in the fourth category). When drivers not on the registry die under conditions where the organs can be recovered, the families are asked to decide on behalf of the deceased.

Under an opt-in process, drivers in category 2a are miscategorized. They don’t want to be donors and didn’t want their family to override that decision, but the family is still allowed to decide. The drivers in categories 3a and 3b are miscategorized as well. The ones who don’t want to be donors (3b) are also forced to allow their families to decide. The ones who want to be donors (3a) are now left to let their families decide.

Opt-out incorrectly includes some drivers in the donor registry

Under an opt-out process, drivers in categories 1a, 1b, 3a, 3b, and 4 are grouped together and placed on the organ registry. If the donor registry is binding and the family is not allowed to stop the donation, then the process is called presumed consent. (Note that many authors use opt-out and presumed consent interchangeably. However, they are distinct ideas. Opt-in is a mechanical process of deciding which driver names are added to the registry. Presumed consent is a legal condition that avoids the need to ask the family for permission to recover the organs.)

Drivers in category 3a who wanted to be registered are now correctly placed on the registry. But any drivers in category 3b who don’t want to be on the registry are now assumed to want to be donors, a completely incorrect categorization. Similarly, all drivers in the fourth category who were undecided are now members of the definite donor group and the family no longer has a say.

Only drivers in category 2a and 2b are excluded from the registry. We can be quite certain these people do not want to be donors. But some (category 2a) were willing to let the family decide. Now they are combined with the group of drivers who explicitly do not want to donate.

The distribution of categories into the registry under the opt-in and opt-out process and how they are treated are shown in the table below.


Categories added to donor registry
Categories not added to donor registry

Implications

Opt-in process 1a, 1b both treated as if in category 1a (explicit consent) 2a, 2b, 3a, 3b, 4 all treated as if in category 4 (family choice) Drivers in registry are nearly certain to want to be donors. Actual desire of drivers not on registry is ambiguous
Opt-out process 1a, 1b, 3a, 3b,4 all treated as if in category 1a (presumed consent) or 1b (family choice) 2a, 2b both treated as if in category 2b (explicit reject) Drivers not in registry are nearly certain to not want to be donors. Actual desire of drivers on registry is ambiguous

 

Ethical implications of misclassification

If there are no drivers in categories 3a, 3b, and 4, then switching from opt-in to opt-out will have no impact on the size of the donor registry. However, if there are any drivers in these categories, then some will be incorrectly categorized regardless of whether opt-in or opt-out is used. This miscategorization will lead to some ethical problems.

Under opt-in, there may exist cases where the drivers has made a decision to donate (category 3a) or not (categories 2a or 3b) but family members overrules it. These errors are hard to avoid because they are caused by the lack of agreement between the drivers and other family members.

However, under opt-out combined with presumed consent, there may exist cases where neither the driver (category 3b) nor the family want to donate, but cannot stop it. Similarly, the driver may want to let the family choose whether to donate (category 4) and the family does not want to donate but cannot stop it.

It appears that from an ethical perspective, opt-in is less likely to create a situation where the respect for individual’s right to make decisions about how the body should be treated is denied. For further discussion of the ethical issues see  J. Med. Ethics Jun 2011, and J. Med. Ethics Oct 2011 (subscription required).

Next we will look at the impact switching from opt-in to opt-out will have on the interaction between the organ recovery coordinator and the family. See Part 2 here.

[Update: This blog post was significantly modified to clarify the “decision framing” issue.]

A huge front-page story in today’s Denver Post features Love Hope Strength Foundation’s effort to sign up people to the bone marrow registry. The group hands out flyers as people drive into the parking lot of rock concerts (and other events) and then takes cheek swabs (later used to create an HLA profile) as they walk into the venue.

RobRushing

Rob Rushing of the Love Hope Strength Foundation at Red Rocks Amphitheater. Photo by Hyoung Chang for The Denver Post

I’m fascinated by the group’s motto of “Saving lives one concert at a time.” Here is an organization that has found a way to attract the young people who make the best bone marrow donors. It makes itself highly visible at rock concerts.

By doing so, Love Hope Strength generates publicity for its cause. Recruiting people at the event itself is very useful. But by doing it in a public venue it makes joining the registry a socially acceptable activity. And it does more. It generates interest in donating money and in becoming a volunteer. Finally, it educates the public about the important role adult stem cells play in fighting cancer and other diseases. Overall, this is a wonderful model to engage young adults in a healthcare related activity.

Does using Internet Explorer make you stupid? I think not, but sometimes it can trick you. (See part 1 of this story here.)

I use a variety of browsers and operating systems, but my favorite is Internet Explorer 9 running on Windows 7. I like the feature that combines the address bar with the search box into a single text edit field. It allows me to just type a company name in the search box and the browser will resolve it into a domain name for me. (Of course, not everyone likes this design.)

Anyway, a few minutes ago I was using Safari on my Mac and typed “Ikea” in the address bar. Naturally, what I really wanted was “www.ikea.com”. Safari doesn’t automatically send invalid URLs to the search engine like IE9 does. I have Comcast broadband at home. Comcast detects and captures any invalid URLs and displays its own custom DNS error page, a practice called DNS hijacking. A portion of the page is shown below.

IkeaComcast

Custom DNS error page. Image from Comcast

Notice that the first item is a sponsored link that has the title “IKEA.com – Official Site” and has the URL www.ikea.com that I wanted highlighted in green. Naturally, I clicked on it. After a few redirections, this is what I see:

Ikeapromotion

It sort of looks like an Ikea home page. Image from rewardsclub.com

This looks like it could be the official IKEA site, but it isn’t. The domain name displayed in the address bar is not for ikea.com but for rewardsclub.com, one of those credit card scam companies that is basically a phishing site. The top part of the page is designed to look like it is complete. But you will notice that the scroll bar indicates there is more content below the fold. If you are willing to scroll down, you’ll see the following disclaimer:

IKEA is a registered trademark of Inter IKEA Systems B.V. BigBrandRewards.com is not affiliated with IKEA®. All IKEA® trademarks are the property of IKEA® and BigBrandRewards.com does not, in any way, claim to represent or own any of the IKEA® trademarks or rights. IKEA® does not own, endorse, or promote BigBrandRewards.com or this promotion.

This Gift Program is not endorsed, sponsored by or affiliated with the manufacturers and retailers of the gift items listed above in anyway. All trademarks, service marks and logos are property of their respective owners.

Well, I guess that disclaimer may protect them from lawsuits by Ikea (trademark infringement) or from disgruntled customers and state attorneys general (fraud and deceptive trade practices). But I doubt it.

This sucks. Only a credulous rube would actually purchase a prepaid credit card. But everyone is forced to waste time figuring out that this is not the Ikea website and either manually typing in the correct URL to get there or go back to Comcast’s search page and click on a different link.

However, I don’t blame Comcast for this travesty, at least not directly. I believe the search results on the DNS server not found error page are provided by Yahoo (which uses Microsoft Bing as its search engine) and that Yahoo and Microsoft run the keyword auctions that populate the sponsored links. Thus, it is up to them to ensure that the green text in the sponsored link ads matches to the domain that the user will be redirected to.

Does using Internet Explorer make you stupid? I think not, but maybe smart people are willing to believe any lies about Internet users.

Recently, a Canadian firm called ApTiquant issued a press release saying that it conducted an online IQ test using over 100,000 people. It recorded the results and the web browser used by the participants. They produced a downloadable white paper that contains a couple impressive looking graphs that show people using Internet Explorer 6 had lower than average IQ.

ApTiquantIQ

Users of Internet Explorer 6 are getting stoopid. Chart from ApTiquant

The story was picked up by many media outlets including CNN, Forbes, and others. Some even included an explanation of why this data would be expected. For instance, it could be that Internet Explorer 6 was released in 2001 and so anyone who was still using it would be more likely to be poor and have lower educational attainment.

Another is that many users of Internet Explorer just use the product because it was installed by default when purchasing a computer. Users of other browsers often need to download it, install it, and use it. Only more determined people, who presumably are also of higher intelligence will do this. As they exit the population of Internet Explorer users, they leave behind a pool of less intelligent users.

Finally, certain companies and the government agencies require all employees to use a specific browser, like IE6, to maintain compatibility with line of business websites. This implies workers at organizations that lack IT resources to upgrade internal tools bring down the average.

But alternative views did appear. The BBC quoted Professor David Spiegelhalter of Cambridge University’s Statistical Laboratory, who said: “I believe these figures are implausibly low – and an insult to IE users.”

Eventually, it was revealed that the whole story was a hoax. There is no company called ApTiquant. No IQ tests were performed and the white paper was a fabrication. The ruse was  perpetrated by an online shopping comparison website called AtCheap.com to raise awareness that Internet Explorer 6 was not compliant to web standards and rendered many web pages incorrectly. The company encourages users of IE6 to switch to a more modern browser in order to view more websites in a manner that their creators intended.

(See part 2 of this story here.)

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