by George Taniwaki

SEIU_775_purple FFlogo Wa2016Yes1501

I’m a libertarian by nature. (That’s libertarian with a small L, meaning I believe in government transparency and clarity. Please don’t confuse it with Libertarian with a capital L, which I associate with mindless anarchy.) Every two year, I dutifully check for my ballot and voter pamphlet (Washington has voter by mail). The number of items seems to be getting longer, especially voter initiatives.

Here is my method of deciding how to cast my ballot on voter initiatives. First, I start skeptically. Most voter initiatives are funded by political extremists who do not consider the consequences of adopting their pet idea. But I do my online research, checking analysis produced by hopefully reputable and unbiased sources. Ultimately though, I usually vote against them.

This year in Washington, there a really bizarre ballot issue. It is Initiative Measure No. 1501. “Increased Penalties for Crimes Against Vulnerable Individuals”

This measure would increase the penalties for criminal identity theft and civil consumer fraud targeted at seniors or vulnerable individuals; and exempt certain information of vulnerable individuals and in-home caregivers from public disclosure.

Should this measure be enacted into law? Yes [ ] No [ ]

How could anyone be against this? We want to help seniors, right? Well, it’s not that simple.

A convoluted story

There is a very complex story about this initiative. It involves a union, an antiunion think tank, and the U.S. Supreme Court. Initiative 1501 is sponsored by the Service Employees International Union (SEIU) that represents healthcare workers that work in nursing homes or provide in-home care. Washington, like most states, requires certain workers, such as nurses, to have a license in order to provide services to the public. About one-third of all service workers in the U.S. require licenses. In many cases, these workers are also unionized.

Enter the Freedom Foundation. This antiunion policy group is headquartered in Olympia, Washington. It was founded by Bob Williams, who was formerly with the American Legislative Exchange Council (ALEC). You may have heard of ALEC; it is a corporate funded lobbying group that writes model legislation (which obviously is designed to further the goals of its corporate clients) which it then provides to state legislators to review. The legislators can then submit the bills for approval into law. The Freedom Foundation provides very similar services.

In 2014, the U.S. Supreme Court ruled 5-4 in Harris v. Quinn that an Illinois state law that allowed the SEIU to collect a representation fee (union dues) from in-home healthcare workers wages was unconstitutional. The reasoning was that the fee violated the First Amendment rights of the workers to not provide financial support for collective bargaining.

After the ruling, the Freedom Foundation complained that the SEIU was not doing enough to inform its members that they did not have to pay the representation fee in order to belong to the union. Though a public records act, it sued the union and the state, won, and started to send communications to members encouraging them to stop paying the fee.

Since a Supreme Court ruling covers the entire U.S., not just Illinois, the SEIU realized that it was very vulnerable to attack by the Freedom Foundation or other antiunion organizations.

Now the initiative makes sense

In Washington, the SEIU proactively sponsored Initiative 1501 as a direct attack against Freedom Foundation. The SEIU wants to avoid having to release the names, addresses, and phone numbers of its members (or having the state reveal these either). Initiative 1501 does this by saying that in-home caregivers are a protected class, like seniors or vulnerable individuals, that the state and the union cannot release personal information about.

After all that research, the story starts to make sense. This is a battle between two parties that a libertarian like me dislikes. But more transparency is better than less. So I will vote no. Sorry seniors and vulnerable individuals, you will have to rely on existing statutes to protect you.

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by George Taniwaki

Patients are often frustrated and confused when navigating the healthcare system. Part of the problem is that if you are sick or hurt, it reduces your cognitive abilities. But it also because hospitals are busy places with little funding for improving the user experience. Often the layout of the rooms, the signage, the forms and instructions, and the language used by the staff are not tailored to the needs of patients who are unfamiliar with the system.

Design to reduce patient violence

A significant problem in hospital emergency medical departments (called A&E in Britain, ER in America) is abusive and violent patients. According to the National Audit Office, violence and aggression towards hospital staff costs the NHS at least £69 million a year in staff absence, loss of productivity and additional security.

Some other statistics from the Design Council report: More than 150 incidents of violence and aggression are reported each day within the NHS system. In 2010, the incidence rate of violence and aggression was about 1 per 1000 patients. In 2009, 21% of staff report bullying, harassment, and abuse by patients, 11% report physical attacks by patients.

Working with the National Health Service, a design firm called PearsonLloyd developed some low-cost methods to reduce the incidence of violence and aggression, increase patient satisfaction, improve staff morale, and reduce security costs. They call their program, A Better A&E. The program was pilot tested at St. George’s Hospital in London and Southampton General. For an introduction, see the video below.

BetterAE

Figure 1. Still from video “A Better A&E. Image from Vimeo

Signage and brochure

The program consisted of three parts. First, improved signage was installed that included an estimated wait times along with a brochure that explained why a patient who arrived after you could be seen a doctor before you.

BetterAEbusyBetterAEWait

Figures 2a and 2b. Large screen monitor alternately shows how busy the A&E is and then how long the wait time is for different categories of patients. Images from Design Council report

BetterAEbrochure

BetterAESignage

Figure 3a and 3b. A page from brochure explaining why wait times differ among patients and what to expect at each station. Signage posted at each patient area keyed to the brochure. Images from Dezeen.com

Root cause analysis

The second part of the redesign was the introduction of program to capture information from doctors, nurses, and other staff about factors that led to violent and abusive behavior. The program included root cause analysis and a prominently posted Incident Tally Chart to record the “variables within the system that might hinder the ability of staff to deliver high quality care.”

BetterAEIncidentTally

Figure 4. Incident tally posted where staff can record any events during their shift. Images from Design Council Report

Toolkit and patterns

The final part of the program was to design a toolkit that would take the lessons from the A&E departments of the two pilot hospitals and generalize them so that they could be adopted by any hospital within the NHS system. The toolkit is presented as an easy to use website, http://www.abetteraande.com

Results

Surveys of patients and staff taken after the redesign indicated that both groups saw benefits.

  • 88% of patients felt the guidance solution was clear
  • 75% of patients felt the signage reduced their frustration during waiting times
  • Staff reported a 50% drop in threatening body language and aggressive behavior
  • NHS calculated that each £1 spent on design solutions resulted in £3 in benefits

by George Taniwaki

There is an ongoing argument regarding whether we as a society should pay people to donate a kidney. These arguments, both pro and con, revolve around two issues, whether such payments are the right thing to do (ethics) and whether they would increase the number of available organs (economics). This blog post will describe the economic effects of payments.

Organized markets

Before analyzing the effect of payments on the supply of donors, I want to assure readers that payments can be regulated. For instance, nearly all the blood, plasma, and platelets in the U.S. is collected from unpaid donors. Yet at the same time, there is also an active government regulated market for plasma. Similarly, family members and friends are a common source of donor eggs, donor sperm, and surrogates to allow individuals to have a child. But there is an active market for these as well.

An organized market for donor organs would not likely include person-to-person transactions. Rather, it would involve highly regulated, non-profit entities that would act as intermediaries between donors and patients, similar to the existing network of organ procurement organization (OPO) that recover and distribute organs from deceased donors. In other words, ignore the image in Figure 1.

kidney_for_sale_tshirt

Figure 1. Kidney for Sale t-shirt. Image from zazzle.com

One of the arguments against paying donors for organs is that it will favor wealthy patients who can afford the price. That is not necessarily so. Laws can still be written to prohibit individuals or hospitals from making payments to donors. The payments can be regulated to only allow insurance companies and other government sanctioned groups to make payments. Similarly, the organs collected from donors need not be transplanted to patients based on ability to pay for the organ. They can be allocated by whatever method is deemed medically and ethically justified.

More patients could benefit from transplants

Many kidney disease researchers, ethicists, and economist agree that under the right circumstances, increasing transplant rates would be a good thing. First, transplants improve medical outcomes. Second, transplants save money.

Studies have shown that patients with end-stage renal disease (ESRD) who receive transplant therapy live longer than those who receive dialysis therapy (U.S. Renal Data System 2013 Report). This is true even after adjusting for the fact that transplant patients are healthier on average than the overall kidney patient population (R. Wolfe, et al., New Engl J Med Dec 1999).

The data also shows patients who receive transplant therapy report a better quality of life than those who receive dialysis therapy (W. Fiebiger, et al., Health and Qual Life Outcomes Feb 2004).

More transplants would save money

In addition to being better for the patient, transplants can save money. Dialysis therapy costs about $75,000 per year per patient. Transplant therapy costs about $150,000 for the first year (evaluation, surgery, recovery, and follow-up) and then $15,000 per year thereafter (antirejection medication, infection control, and monitoring). Over the lifetime of the graft, a living unrelated donor can save society $94,000 compared to dialysis (A.J. Matas and M. Schnitzler Amer J Transpl Feb 2004). Adding the value of the additional 3.5 quality-adjusted life years for the patient increases the social benefit to $269,000.

A recent paper by B. Manns et al. (Clin J Amer Soc Nephr Dec 2013) indicates that even a 5% increase in the number of donors would justify a payment of $10,000 each by providing an incremental cost-savings of $340 and a gain of 0.11 quality-adjusted life years.

There is a shortage of suitable organs

The reasons more kidney patients don’t pursue and receive transplant therapy are not fully understood. One thing is certain though. The number of viable organs that become available each year is significantly lower than the number of patients newly diagnosed with ESRD. Thus, the expected wait time for a transplant continues to get longer (up to 8 years in California).

About 15% of patients on the waiting list die each year, so the proportion of patients who die without ever getting a transplant increases as the wait gets longer (over 50% in California). This long wait may deter some patients (and their doctors) from even starting the transplant evaluation process. As of this writing, there are 98,935 people in the U.S. waiting for a kidney transplant.

According to the U.S. Renal Data System, there were 115,643 people newly diagnosed with ERSD in 2011, the latest year data is available. This includes 2,855 who received a preemptive transplant (meaning they received a transplant before having to go on dialysis). In contrast, the  Organ Procurement and Transplantation Network (OPTN), shows there were only 16,814 transplants performed in the U.S. in 2011. The breakdown by donor type is shown in the table below.

Living directed donor   3,761
Living exchange donor       575
Living nondirected donor       157
Deceased directed donor       123*
Deceased nondirected donor 12,198
Total 16,814

*Assumes that 1% of deceased donor transplants are directed (OPTN 2009)

Of the total, 3,761 came from living directed donors, meaning the donor and the recipient knew each other. 575 came from exchange donors, meaning the donor knew the intended recipient but was incompatible so donated to a stranger who was in the same position and they swapped kidneys (for details see Mar 2010 blog post).  157 came from living anonymous or nondirected donors, meaning the donor did not have an intended recipient (similar to most blood donations). Finally, 12,321 came from deceased donors (of which all but about 123 are nondirected).

Costs to becoming a live kidney donor are high

For now, we will ignore the impact of paying for deceased donor organs and focus on a possible market for live donors. Further, we will ignore the ethics and legality of paying people to become live kidney donors. We will cover these issues in a future blog post. For now, we will explore the economics of paying for live donors.

Being a living donor can be expensive. The evaluation and surgery are paid for by the recipient’s insurance. However, there are lots of out-of-pocket costs such as travel to and from the transplant hospital for evaluation. In some cases, there can be multiple trips and may require a hotel stay for out-of-town donors. There are also opportunity costs, such as lost wages (or foregone billings for the self-employed) for the time spent in evaluation, surgery, and recovery. The time spent at home after surgery can vary from a few days to over a month, so this is a real burden for people who don’t receive sick pay or disability insurance from an employer. I estimate the total out-of-pocket and opportunity costs for a typical donor to be about $2000.

Usually, all of these costs are borne by the donor, meaning most donors are wealthy. Sometimes, the recipient will pick up some of these costs, especially if they are wealthy. Sometimes the donor and recipient conduct a fund-raiser to pay these costs. Finally, there are several charities that provide reimbursement if the donor or the recipient cannot afford the financial burden of paying for a living donor transplant. The best known of these is the National Living Donor Assistance Center.

Supply curves for nonaltruistic, nondirected donors

To analyze the effect of payments for kidney donors, we will use the basic technique used by economists called a supply curve. The supply curve shows the quantity (Q) of organs supplied for any price (P). We will look at the impact of paying for kidneys on three groups of living donors.

The first group is the nonaltruistic, nondirected (NAND) donors. This consists of the population of people who are aware of the existence of people who need a kidney transplant but don’t know anyone personally who needs a kidney. Further, they may be willing to donate a kidney, but have no desire to donate a kidney for altruistic reasons.

Figure 2 shows a hypothetical supply curve for kidneys from this population. At the current offering price today (Pcur), the quantity of kidneys offered by NAND donors is zero. Note that Pcur is negative and reflects the costs associated with  being a donor.

Raising the offer price will not result in any donors appearing until an offer of PNANDmin is made and the first donor will step forward. This initial price may be quite high due to what is called the repugnance factor by economist Alvin Roth (J Econ Perspectives, Summer 2007). (Repugnance will be discussed again when we explore the moral and legal issues surrounding payments to donors.)

As the price rises, more donors appear. However, at some point there may be some proportion of these potential donors who will be very reluctant to volunteer, regardless of the amount of money offered (perhaps because of very high repugnance, fear, or dislike of pain). At this point the supply curve will rise steeply, until you reach the last person in the population (QNANDmax) where a very large sum of money must be offered before they will be willing to undergo kidney donor surgery.

DonorSupplyNAND

Figure 2. Supply curve for nonaltruistic, nondirected donors

Note that I made a simplification in the supply curves shown above and below. I assume the out-of-pocket costs and opportunity costs for all donors is the same and equal to Pcur. Actually, this is not true and these costs can vary widely. However, allowing for varying costs makes the analysis much more complex without adding any new insights.

As an aside, behavioral research shows that people’s preferences are not stable, called the endowment effect. For instance, many people may say they would not donate a kidney for $20,000. But imagine what would happen if we gave those people the $20,000 first and ask them to consider what they could do with that money. Then we wait a few minutes and ask them if they would rather give the money back or donate a kidney. At that point, many may decide donating the kidney is their preferred choice.

Supply curve for directed donors

The second group we want to look at is potential directed donors. These are people who know someone who needs a kidney transplant and may be willing to donate to that person. The reasons may be altruistic, self-interest (not wanting to lose a relative or friend), or perhaps even coercion by the recipient or family members. Regardless of the reason, we can draw a supply curve like the one shown in Figure 3.

This curve looks very similar to the one in Figure 2 except it is shifted down. That is, once a potential donor develops a connection to the recipient, the minimum reservation price drops. That’s because the act of donation generates utility for the donor. At the current price of Pcur there are QDDcur donors.

DonorSupplyDD

Figure 3. Supply curve for directed donors

Raising the price offered to this group should increase supply, even if the offered price is below PNANDmin. Just reimbursing every donor’s out-of-pocket and opportunity costs could have a significant impact on supply. However, the supply is limited to QDDmax based on the total number of people who know someone who needs a transplant.

Supply curve for altruistic nondirected donors

The third group we want to look at is altruistic nondirected (AND) donors. Even though these donors do not know the recipient, and in fact often will never know the recipient, the supply curve for this group looks very similar to that of the directed donors. The utility an AND donor derives from her donation is not from helping a known person. Perhaps, it comes from imagining that the donation is helping a deserving person, or helping society as a whole, or the donation represents an act of altruistic sacrifice. At the current price of Pcur there are QANDcur donors.

Similar to the case for directed donors, just reimbursing every donor’s out-of-pocket and opportunity costs could have a significant impact on supply. Offering a payment (which a truly altruistic donor could decline and donate to charity) may increase the supply as well. However, it is not likely to have a large effect. I suspect the supply of altruistic donors is inelastic. I also believe the total number of people who would be willing to donate to a stranger QANDmax is limited as well, though probably significantly larger than the current 150 per year.

DonorSupplyAND

Figure 4. Supply curve for altruistic, nondirected donors

Shifting the supply curve

There is an alternative response to raising the offering price to AND donors. Since the utility the AND donor receives is dependent on psychological reward, any action that reduces the value of that reward may shift the supply curve upward. At the limit, the AND donors will become a NAND donors. In the worst case, the former AND donors may have a higher reservation price than the NAND donors causing the supply curve to be above the curve for the NAND donors (dashed brown curve S’ in Figure 4).

If this supply curve shift occurs, then paying donors could have the perverse effect of reducing the total number of donors until price PNANDmin is exceeded and NAND donors begin to appear.

Conversely, a well-crafted marketing effort to encourage more people to become AND donors can keep the AND curve from shifting upwards. It can also convince some NAND donors to reconsider their position and become AND donors, causing the total number of NAND donors to shrink and the number of AND donors to rise (shifting QNANDmax to the left and QANDmax to the right).

Add it all up

Combining the three supply curves would create an overall supply curve that would look similar to the solid line in Figure 5. At the current price Pcur, the number of donors is QDD+ANDcur. When the price reaches PNANDmin, the NAND donors will begin to enter the market.

If making payments causes all the AND donors to become NAND donors, then the supply curve shifts to upward as shown by the dashed line S’.  At the current price Pcur, the number of donors falls to QDDcur. When the price reaches PNANDmin, the NAND donors will begin to enter the market. When the price reaches P’ANDmin, the former AND donors will enter the market. Note that even if all the AND donors become NAND donors, there will still be a market price somewhere above PNANDmin that will result in more donors than are currently available at the current price of Pcur.

DonorSupplyTOT

Figure 5. Cumulative supply curve for all donors

More resources

For more on the economic analysis of organ markets, see the following papers.

A. Tabarrok. Library Econ Liberty, Aug 2009. Discusses payment for deceased donor organs.

Scott Halpern, et al. Annals of Int Med, Mar 2010. 342 participants were asked whether they would donate a kidney with varying payments of $0, $10,000 and $100,000. The possibility of payments nearly doubled the number of participants in the study who said they would donate a kidney to a stranger. Payment did not influence those with low income levels more than those with high incomes.

Gary Becker and J.J. Elias. J. Econ Perspectives, Summer 2007. A thorough analysis of the cost and number of transplant performed if payments were allowed for the donation of both live and deceased donor kidneys. It also counters the arguments against payments.

by George Taniwaki

Once you and your kidney matchmaker have mailed letters to all of your friends, relatives, and others on your mailing list, consider broadcasting your message to an expanding circle to include coworkers, church members, neighbors, and others in your social network who you don’t know as well. One or more of them may be willing to begin the donor evaluation process. But until you tell them, they are unlikely to know of your need for a kidney donor. And if they don’t know, they won’t get tested.

One of the best way to reach these folks is a flyer (Fig 1) posted on a message board where they can see it.

FlyerSandra

Figure 1. Example of a half-page flyer. Courtesy of Sandra Driscoll

Design a flyer

A flyer can be almost any size from business card (2” x 3-1/2”) to poster (24” x 36” or more). For convenience, I recommend making it 8-1/2” x 11” (or A4 size in Europe) with vertical (portrait) orientation. A good flyer is like an advertisement. It must catch a person’s attention and make them want to stop and read it. Like an advertisement it should have the contain the following elements:

  1. Headline
  2. Photograph or illustration
  3. Message to potential donors
  4. Your contact information
  5. Logo (optional)
  6. QR code (optional)
  7. Tear-off tabs (optional)
  8. Calling card holder (optional)

Tips for creating a flyer are available at the Living Kidney Donor Search (LKDS) website

Items 1 through 5 (Headline to Logo)

Advice for creating a headline, photograph or illustration, message to potential donors, your contact information, and logo are provided in a separate Nov 2013 blog post.

The advice in that blog post was specifically targeted toward the design of a calling card, which is generally much smaller than a flyer. Just because a flyer has more space available doesn’t mean you need to fill it all with text. Having abundant white space makes the flyer attractive and can guide the eye to the important information. Use the extra space to make the headline bigger, make the picture bigger, and add more white space around your message to potential donors. Resist the temptation to add more text and make your story more detailed. Instead keep it the same as your calling card. Or, if you do add more text, do it to make your story more persuasive in order to drive people to your website or take other action.

Add a QR code to your flyer

A QR code is a 2-dimensional bar code (Fig 2). Anyone who owns a smartphone with a built-in camera and a bar code reading app can scan the bar code and be directed to a website with more information.

If you have a personal website or Facebook page with information about your need for a kidney donor, you should add a QR code to your flyer. You can do this by going to http://delivr.com/. This free service will create a bar code for you. Further, every time someone scans your bar code, it will track it and provide you with statistics about the users.

For instance, I created an account on delivr.com. I created a new campaign and entered the address for my patient guide, https://realnumeracy.wordpress.com/kidney-patient-guide/. The delivr.com service creates a custom link for me delivr.com/2tpt6 and generates the QR code that I can include anywhere (Fig 2).

FlyerQRcode

Figure 2. QR code that directs readers to delivr.com/2tpt6 and redirects to realnumeracy.wordpress.com/kidney-patient-guide

An example of a flyer with a QR code is shown below (Fig 3). One suggestion to improve this flyer. I would include the web address in the flyer. That way, people without a smartphone can still visit the website by writing down the address and visiting it once they get home.

FlyerTarra

Figure 3. Example of a flyer with QR code. Image from Shining Strong for Tarra

Add tear-off tabs to your flyer

To engage people who don’t have a smartphone, you can add tear-off tabs to the bottom of your flyer. The tear-off tab should include your phone number and website address (Fig 4). A little trick to make people more likely to tear off one of the tabs is to tear the first one off yourself before posting the flyer.

Also remember to include all the contact information in the body of the flyer so that people can copy it down in case all the tabs are taken.

FlyerEric

Figure 4. Example of a flyer with tear-off tabs. Image from KidneyQuest.com

Add a calling card holder to your flyer

Even better than tear-off tabs is folding the bottom of the flyer to create a pocket to hold your calling cards (Fig 5). Encourage people to take one. Again, remember to include all the contact information in the body of the flyer so that people can copy it down in case all the calling cards are taken.

FlyerCallingCardHolder

Figure 5. Example of a flyer with calling card holder

Printing and distributing your flyers

The least expensive way to print your flyers is to use a home inkjet printer. If you don’t have one, you may be able to have your matchmaker or another friend print them for you. Otherwise, you can have them printed at a local print shop. For great tips on choosing paper and printing flyers check out the LKDS website.

Places that often have a bulletin board where you can post your flyer include:

  1. The print shop where you bought your flyer
  2. Grocery stores
  3. Your workplace or union hall and those of all your friends and family members
  4. Local shopping malls/strip malls
  5. Churches

Remember to get permission from the owner of the bulletin board before posting your flyer.

To make it easy for your friends and family to print their own flyers, make sure a copy of it is posted on your website.

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

If you are a kidney patient seeking a living donor, you need to start what Harvey Mysel of the Living Kidney Donors Network (LKDN) calls a Kidney Kampaign. A search for a donor is all about numbers. You want as many people as possible to know about your need for a kidney transplant. Whenever you meet someone, tell them about your condition and your story. Then, at the end of any conversation, remember to give them calling cards printed with pertinent information (Fig 1).

Giving people your calling card serves two purposes. First, it will remind them later of who you are and how to contact the transplant center. Second, even if the people who you give the card to do not personally decide to get tested, they may remember your story and speak to 3, 4, or maybe even 20 other people about their meeting with you. One of these people may step up and get tested. This is how social networking can help you reach a vast audience and can help you find a living donor.

HarveyCardFrontHarveyCardBack

Figure 1. Example of a kidney kampaign calling card. This is the card used by Harvey Mysel, the founder of Living Kidney Donors Network when he discovered he needed a transplant in 2012

Give away your calling cards

You and your matchmaker (topic of a future blog post) should give away your calling cards freely. Hand them out to all your friends, family, and acquaintances, even to strangers. And don’t just give them one card. Offer several and ask the recipients to help spread your story and to give away the cards to others.

Calling cards are useful beyond face-to-face encounters. When you and your matchmaker send cards and letters (see Nov 2011 blog post), remember to include several calling cards in the envelope.

When you post a notice on a message board (topic of a future blog post), remember to include a pocket to hold a stack of calling cards.

When you and your matchmaker host an event (topic of a future blog post), remember to hand out calling cards to all the participants.

Design a calling card

A calling card is different from a business card. A business card just presents the facts, your name, company, and contact information. A Kidney Kampaign calling card provides contact information, but it must also provide a compelling story to get the person receiving it to take some action.

There are three very good sets of instructions on creating a calling cards to find a kidney donor. The first is by the Living Kidney Donors Network. The other two resources are provided by Living Kidney Donor Search and the Living Kidney Donor Search tools and tips. You should read the excellent advice given on all three websites.

A basic business card is 2” x 3-1/2”, printed one-side, horizontal (landscape) orientation, in black and white (Fig 2). But to make your card stand out, consider the following options:

  1. Vertical (portrait) orientation
  2. Four-color printing, especially good for photographs
  3. Printed two-sides, also called duplex printing, almost required to fit all the information needed
  4. Reverse type, that is, white lettering on a dark background (should be limited to large bold text, like the headline)
  5. Picture or graphic that runs off the edge of the card, also called a bleed
  6. Folded card, shaped like a tent, helpful if you have a longer story to tell and will also make you card stand out from other cards

CallingCard

Figure 2. Examples of the options described above

A kidney donor calling card is quite different from a business card. A business card is passive and just provides basic information for the recipient of the card to contact you. Your calling card is more like an advertisement. Like an advertisement, it should contain the following five items:

  1. Headline
  2. Photograph or illustration
  3. Message to potential donors
  4. Your contact information
  5. Logo (optional)

Each of these items is described in detail below. When designing your business card, start with pencil and paper and rough out the design before going to the computer to create the final design that will be printed.

Headline

The first two things a person will see on your calling card are the headline and the photograph. If you don’t have a photograph on your card, then you will definitely need a headline. The headline should be direct and no more than one sentence long. Some ideas are:

  1. Help me fight chronic kidney disease
  2. Help me find a kidney donor
  3. Become a living kidney donor
  4. You can give the gift of life
  5. Save a life, start with a simple test

Photograph or illustration

A large photograph or illustration is optional, but it is highly recommended that you include one. A picture will draw the attention of any person who looks at your calling card for the first time. To be effective at creating a positive connection, the photograph must be of high quality. Don’t skimp. Don’t try to take the picture yourself. Ask your matchmaker or a camera-savvy friend for help.

To make the best first impression, the picture should be of high technical quality. You often cannot fix a bad picture using a photo editing tool like Photoshop. Instead, start with a good shot. This means the picture should be:

  1. In focus (to avoid fuzzy image)
  2. Taken with a tripod or steady hand (to avoid shaky or blurred image)
  3. Well lit (to avoid grainy background or red-eye)
  4. Taken in daylight (to avoid blue fluorescent cast or orange tungsten cast)
  5. Taken with the background chosen with care and cropped to eliminate extraneous items in the background

Some recommended subjects that will make the photograph compelling are listed below.

  1. A close up of you smiling (a natural smile, not a forced one)
  2. You with other members of your family who cannot be donors (you will need to explain why they cannot be donors in the text of the calling card)
  3. You with pets
  4. You with props that show you participating in a favorite hobby or family activity

Message to potential donors

Your message to potential donors should include an appeal that explains why you want them to donate. It should also include instructions on how to get started as a donor. The message has to be short. You can only fit about 100 words on the front and back of a standard business card.

An oversized card can have more words, but I actually recommend having fewer words on the card and instead include a link to your website for people who want more details. Some ideas on what to include are:

  1. A short biography and explanation of why you need a kidney transplant
  2. How your family is affected by your condition
  3. Medical benefits to you of living donor transplant (compared to lifestyle when undergoing dialysis therapy)
  4. Who can donate, must be between XX to XX in age (ask transplant center for its range), no uncontrolled hypertension, diabetes, or kidney disease, overall good health
  5. How to learn more about the costs and risks of becoming a living donor (link to website for details)
  6. Call for volunteers to get a simple blood test to start the process
  7. Contact info for the living donor transplant coordinator, or the independent living donor advocate, depending on the process at your transplant hospital
  8. Encourage them to spread the word about your need to others

with you the latest Be sure to inform the transplant coordinator and independent living donor advocate of your plans to publicize your donor search.

An example of a biography is shown below:

Hello, my name is John Smith. I have kidney disease and I’m in need of a kidney transplant. The wait for a deceased donor kidney can be more than 5 years. To avoid this wait, I am actively pursuing a living kidney transplant. A kidney from a living donor lasts about twice as long as one from a deceased donor.

Kidney donors need to be healthy, no high blood pressure or diabetic. A blood test will determine whether additional tests will be done to see if you are a suitable donor. To schedule a test contact Janet Jones, my transplant coordinator at the New York Transplant Hospital: jjones@nyth.com or 212-456-7890.

To learn more about the living donation process you can contact me (jsmith@gmail.com or 212-123-4567), visit the LKDN website (www.lkdn.org), or contact my transplant coordinator.

Your contact information

The following information should be included on the front of your calling card:

  1. Name
  2. Phone number (optional, but recommended)
  3. Email address
  4. Web address of your donor search website or Facebook page

Logo

If you are promoting organ donation in general. you may want to include the Donate Life America logo. Similarly, if you are promoting the Living Kidney Donors Network program, you may want to include the LKDN logo.

Where to buy calling cards

There are hundreds of choices for getting your calling cards printed. Any small print shop should be capable of showing you paper, ink, and other options for a professional looking card. If you prefer buying on the web, LKDN has created a portfolio of calling cards on the FedEx Office website (formerly Kinko’s).  To use the portfolio and purchase cards from FedEx Office:

  1. In a web browser, navigate to http://www.fedex.com/us/office/designprint/index.html
  2. Click My Account (on left)
  3. Type E-mail = info@LKDN.org and Password = businesscard and click Sign In
  4. Click View My Portfolio (in Design Center box)

A box of 250 business cards in color, printed two-sided will cost about $50 plus tax and shipping. If you need help, call FedEx Office customer service 1-888-889-7121.

If you want to design your cards from scratch and save money too, Living Kidney Donor Search (LKDS) recommends using Zazzle. The site guides you through the design steps. A pack of 100 cards printed 2-sided will cost about $25. To save even more, LKDS says discount codes for Zazzle are often available on RetailMeNot.

Another popular source for business cards is CafePress. They have a large number of designs available. However, they don’t support 2-sided printing or custom color printing.

More examples

Three more examples of kidney donor search calling cards are shown below.

CallingCardMandyFrontCallingCardMandyBack

Figure 3. Kidney Kampaign calling card for Amando Melgar, III. From LKDN portfolio on FedEx Office website

CallingCardTentFoldCallingCardTentFold2

Figure 4 and 5. Examples of covers for tent fold cards based on a t-shirt design sold by Zazzle (left) and a poster sold by CafePress (right). Designs are copyrighted

Thanks to Harvey Mysel of Living Kidney Donors Network for providing me with example cards that I use in my patient counseling. Additional thanks to Suzanne Kloss of Living Kidney Donor Search for providing additional tips on designing and using calling cards.

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

If you are a kidney patient or a kidney “matchmaker” (a friend or family member who contacts acquaintances on behalf of the patient) searching for a living donor, then hopefully you have already started on a Kidney Kampaign that includes letter writing, social media, and perhaps even a Craigslist ad. If you have already used these techniques in your search, then you may be ready to try something more complex. Today’s blog post covers the ins-and-outs of producing a video to publicize your search.

Producing a video isn’t for everyone. Creating and distributing a polished video requires you to have the skill (or more likely, access to one or more people who have the skills and are willing to volunteer the time) to script, narrate, film, appear in, edit, and post it. However, a video doesn’t need to be polished to be good as I’ll show later.

Adding a video with information about yourself and explaining how to become a living donor is an excellent way to reach your target audience of potential donors. I have reviewed several kidney patient videos posted on YouTube and have come up with a list of items that an effective videos should include:

    1. Introduction of patient and why the viewer should watch this video
    2. Short medical history explaining why patient needs a kidney
    3. Testimonials from friends or family members. Make sure the interviewer/narrator or the interviewees themselves make clear that these people are unable to donate. (This isn’t needed for children, most people will realize that a child cannot give consent to be a donor)
    4. Basic information about the donation process. Address common safety and cost concerns. Do not provide medical advice or donor acceptance criteria. Let the hospital do that
    5. Request for potential donors to get a blood test. (Mention that type O are especially desired, if patient is type O. But do not exclude anybody, again let the hospital do that.) Include contact info for the living donor transplant coordinator or the living donor advocate (usually a social worker) at the hospital where the transplant will take place

A good video can be short. Nearly all of the videos I saw on YouTube were less than 5 minutes long. Incidentally, the best way to promote your video is on YouTube. To do this, follow these steps:

  1. Create a Google account. If you have problems look under the Signing Up section of YouTube help
  2. Upload the video.  Get a final edit of the video on a computer with a high-speed Internet connection. Log into YouTube and from the Video Manager page, select the file to upload. Go to YouTube help for  encoding tips and a list of supported file formats. You will need to verify your account to upload HD videos longer than 15 minutes
  3. Apply metadata. This includes a title, description, category (probably “People & blogs”), search tags (like “need, search, find, kidney, transplant, donor, <your name>”), select a license (I recommend Creative Commons so that other patients will be able to copy it for use in their search), and select a privacy level (probably Public so that anyone can search and view the video)
  4. Get viewers. Copy the URL of the video and publicize it to all your family, friends, and social media contacts

A video produced by Sandra Driscoll, is an excellent example of the above. Sandra is a former city attorney for Seattle and a patient at Northwest Kidney Centers and at the University of Washington Medical Center. Her friends Peter Clarke and Connie McDougall acted as videographer/post-production editor and reporter/producer respectively. Two items that really caught my attention in this video were a photograph showing Sandra’s large extended family in which nobody was able to donate and the testimony from a young nephew about how Sandra’s life changed after she started dialysis.

SandraDriscollVideo

A professionally produced video seeking a kidney donor for Sandra Driscoll. It includes a narrator, interviews shot at multiple locations, and polished editing. Video still from YouTube

Some of the scenes in the video above were shot at an NKC facility. Sandra was careful to get permission before shooting on private property. You should too.

A good video does not require a slick professional appearance to be enjoyable, persuasive, and effective. For instance, three of Sandra’s nieces who are too young to donate themselves put together a heartfelt request for donors to help an aunt they deeply care about. Even though you can see that they are reading from cue cards, the viewer can see their sentiment is honest and it doesn’t detract from the message. (I think an audience may be less willing to accept adults reading from cue cards though.)

EllieDriscollVideo

A self-produced video of three nieces seeking a kidney donor for their aunt, Sandra Driscoll.  Video still from YouTube

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You may notice that I am the donor being interviewed in Sandra’s video. (I think it’s a good video despite my awkward performance.) Although I have several years of experience in advertising and marketing, I personally had never been filmed on camera before. A few things I learned:

  1. Always look at the interviewer. Do not look at the camera which will break the “fourth wall” and look unnatural
  2. Do not look up or dart your eyes, which many people, including me, do while thinking. This makes you appear evasive or dishonest
  3. When talking, avoid pauses that contain filler words such as “um” and “uh.” If necessary, rehearse your responses to avoid this
  4. You may be required to repeat your responses as the camera is moved from one position to another to get different angles. Again, it may help to rehearse your responses to keep them consistent from take to take
  5. Not withstanding all the effort needed to avoid the problems stated above, don’t be nervous. Relax and say what comes naturally. Stress in your voice will be apparent to the listener

****

Incidentally, the best donor search video I found on YouTube was “Are You My Type?” It is a bit long at 14 minutes. The video was produced by Karol Franks on behalf of her daughter, Jenna. Karol is an administrator for the Living Donors Online website. This resource for patients, donors, and potential donors was mentioned in a Dec 2009 blog post. By coincidence, Jenna’s donor search page on Facebook was featured in a previous post on using social media to find a donor.

AreYouMyType

Video still from “Are You My Type?” Courtesy of  Karol Franks

Another nice video is one by David Goldman that features lyrics he wrote to match a tune composed by a friend.

DavidNeedsAKidney

Video still from “David Needs a Kidney” Courtesy of David Goldman

For more ideas on finding a donor, see my Kidney patient guide.

[Update: Added screenshots of the last two videos mentioned in this blog post.]

by George Taniwaki

In addition to direct contact with friends and acquaintances through letters and email, you should also consider using the web to reach a larger circle of friends-of-friends. This method of less personal communications is called social media. The three most popular social media services are Facebook, LinkedIn, and Twitter. A description of each service and how it can be used in your search is described below. To start, I recommend you sign up for a Facebook page for your kidney donor search once you have completed your initial direct contacts.

If you are already an experienced social media user, you may want to consider expanding your search by setting up a blog or even a custom personal website. These options are also discussed below.

In all cases, you should not rely on social media exclusively for your search. Direct contact is more likely to be the successful way to find a donor. For some data on how the number of newspaper articles that mention finding a donor using Facebook, see a May 2013 article on the Living Kidney Donors Search tool site.

Facebook

Facebook is a social network that helps friends and families stay connected. Since there is often little overlap between different friends, a circle of friends-of-friends can often be very large. This can help you find a donor who you don’t know directly but who nonetheless has a connection to you.

If you don’t already have a personal Facebook page, you can quickly and easily set one up at https://www.facebook.com. All you need is an email address and a password. Remember to create a secure password and not to use the same password that you use for your email account.

Once you have a personal account, you can create a page specifically for your kidney donor search. A great place to find tips is at Find A Kidney Central.

If you prefer to do it yourself, start by going to the Create a Page site and click on Cause or Community. Give your cause a name like “Kidney Kampaign for John Smith”, agree to the terms, and click Get Started. You should select a name that can last because you cannot change it after the page receives 200 “Likes” from visitors.

 

Once you have created your page, you will want to take the following steps.

  1. Add admins. These are other people, like your “matchmaker,” who will also have the ability to make changes to the page. There are several types of admins, so take care in choosing who can do what. For more see Managing Admins in the Facebook Help Center
  2. Customize the page. Add a cover photo, profile photo, and complete the summary information. For more, see Customizing How your Page Looks in the Facebook Help Center
  3. Get an audience. Send an invitation to everyone you know, both on Facebook and elsewhere to “Like” your page. Once they do this, posts of your page will appear on their timeline feed. For more, see Reach More People in the Facebook Help Center
  4. Keep them coming back. To keep people interested in your search, and to keep your posts from falling to the bottom of your audience’s timeline, you need to provide regular posts that receive “Likes.” A rule of thumb is to have a post at least twice a month, but probably not more than twice a week (unless it is timely news). For more, see Best Practices of Page Admins in the Facebook Help Center.

WantedKidneyDonor

Screenshot of Facebook community page entitled Wanted: Kidney Donor

Incidentally, you should Like the Living Kidney Donors Network Facebook page so that you can participate in the discussion and support provided by other kidney patients and donors.

LinkedIn

LinkedIn is a social network that targets working professionals and employers. You can create a “Group” in LinkedIn that is similar to a “Page” on Facebook. However, I do not recommend this. First, my guess is that very few professionals will want to join a group dedicated to finding you a kidney donor. Second, maintaining two pages (one on Facebook and another on LinkedIn) will be a burden on you. Instead, I recommend posting occasional reminders on your LinkedIn profile for people to join your Facebook page.

Note that I could not find any groups on LinkedIn dedicated to finding a donor for a kidney patient.

Twitter

Twitter is a broadcast service that allows a member to create a short message called a tweet that is sent to a self-selected group called followers. The followers can see all Tweets sent to them by viewing the feed page.

I recommend using Twitter to announce updates to your blog or website. However, I don’t think Twitter is the correct media to send the actual content of a blog entry or changes to a website since they would probably be too long. Twitter can be used to announce updates to your Facebook page or the entire content of a Facebook post if it is short.

I have a Twitter account that I use to broadcast updates to my blog. I follow several people and publications, but must admit I do not check my Twitter feed regularly. For instance, the screenshot taken below is the first time I have logged into Twitter in several months.

Twitter

Screenshot of my Twitter feed page

Blogs

Facebook is a great way to post current information. However, it only allows posts to be organized by date and it is difficult to search for content. If you want to create a repository of information and don’t mind being limited in format or style, then I recommend using one of several free blogging services. The blog you are now reading is hosted by WordPress, though I also like TypePad and blogger.

KidneyForMyDaughter

Screenshot of home page of blog entitled Kidney transplant for kylies mom

Custom website

If you are comfortable managing content on your own and want complete control over the user experience including text, pictures, video, and interactive elements (also called widgets), then you may want to create a custom website (using a web host such as GoDaddy, Intuit, Yola, or many others).

The cost of registering a domain name is about $10 per year and hosting a website is about $5 to $10 per month. The hosting companies provide website templates, but you can also customize your site as you see fit if you know web programming, or know someone who does.

For an example of a custom website, visit www.HarveysKidneyKampaign.com. This is the site developed by Harvey Mysel, the founder of the Living Kidney Donors Network. This site does not have any fancy interaction but is nicely done. Harvey gives permission to any kidney patient who wants to copy content from this site.

HarveysKidneyCampaign

Screenshot of home page of a custom website at HarveysKidneyKampaign.com

For more ideas on finding a donor, see my Kidney patient guide.

[Update1: Added a link to article on the LKDS website.

Update2: Added a link to Find A Kidney Facebook page.]