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.]

Advertisements

One of the most active areas in online advertising is local deals. And the biggest part of that market appears to be social network-driven, deal-based discount gift certificates (or paid coupons). There are several agencies that facilitate these deals, such as Groupon, LivingSocial, and a large number of other competitors. Below is a description of how the deals work from each entity’s point of view.

Let’s start by explaining the business model of Groupon and similar firms. They are advertising and promotion agencies that focus on small customer service oriented businesses. Groupon has thousands of sales people, designers, and copywriters located in big cities in the U.S. and several international markets calling on small businesses and selling gift certificate deals. In this sense, their efforts are similar to those of direct mail companies, newspaper advertising sales teams, and yellow pages publishers.

The client firm agrees to allow the agency to sell gift certificates to customers at a deep discount, typically half off, such as $15 for $30 worth of goods. The client also agrees to pay the agency a fee for handling the promotion, typically half of the amount collected from customers, so $7.50 for each $30 gift certificate sold.  In exchange, the agency guarantees a certain minimum number of customers, most of whom will be new, will accept the deal or else the deal will be cancelled. The client does not pay anything upfront for this promotional work, Groupon and its ilk only get paid as the gift certificates are sold.

On the promotion side, these agencies maintain opt-in email subscriber lists of consumers who are  interested in receiving daily notifications of deals that are relevant to them. The agencies use recruitment techniques to grow their subscriber lists as large as possible. They encourages social interaction among the members in an attempt to increase the number of participants for each gift certificate deal and to increase the number of gift certificates purchased by each member.

There are two common attributes of the deals offered. First is that a minimum number of purchases must be made or the deal will expire. This encourages members who like the deal and have accepted the offer to solicit their friends to also purchase the gift certificate. The other is that the deal expires after 24 hours or after a maximum number of certificates is sold. This creates a sense of urgency that encourages rapid purchase decisions.

Despite the tremendous growth of group shopping, not all small businesses have been happy with the results. Part of the problem is that small businesses are often not geared to handle a large surge in customers. They underestimate the effect of long waits on profitability and on customer satisfaction. They also don’t have the customer relationship management (CRM) programs in place to convert first time visitors into long-term loyal customers.

Below are a couple of videos that describe the problem. The first one is an AP news story about a nail salon that is overwhelmed when deal seeking Groupon customers crowd out the regulars. It makes what should be a pleasant relaxing experience into a stress-filled, impersonal exercise. The second video is an interview by blogger Rakesh Agrawal that appeared in TechCrunch and has become a viral hit.

GrouponAP

Groupon impact on Crystal Nails in Chicago. Video by Associated Press

GrouponPosie

Groupon impact on Posie’s Café in Portland. Video by Rakesh Agrawal

If you want a first-hand account, you can read a Sep 2010 blog post by Jessie Burke, the owner of Posie’s Café.

AmazonLocal Launches in Seattle

Earlier this year, Amazon made a small investment in LivingSocial, one of the social network, deal-based coupon providers described above. About the same time, Groupon, the largest coupon deal provider rebuffed a multi-billion dollar offer from Google and is expected to launch an IPO later this year.

Last month, and only a day apart, both Amazon and Google jumped into the coupon deal business. Google launched Google Offers in Portland, Oregon. Amazon launched AmazonLocal in Boise, Idaho. This week AmazonLocal expanded into Seattle, where I live. For now, it appears that AmazonLocal is merely wrapping its logo around offers sold by LivingSocial (see example below).

AmazonLocal

Example offer from AmazonLocal. Image from email

I’m not drawn to mob activity, so I’ve never bid on an auction item on eBay and have never participated in a coupon deal. But lots of people find this type of buying fun. All I can say is that growth at eBay stalled after expert buyers automated auction purchases by bidding at the last second, stealing away deals from novices. Bidding at auctions stopped being fun and became a job. eBay is still looking for a new business model to jump-start growth.

Incidentally, eBay is exploring group-buying coupons too. It is testing a website called Kuponan in the Philippines and Social Shopping in India. However, in the U.S., eBay has decided to partner with Groupon for now.

Facebook is starting a group buying service called Deals on Facebook. As you can see, the barriers to entry into this market are low, which is why I am surprised that Google felt it needed to buy Groupon and that Groupon’s IPO is so wildly anticipated.

by George Taniwaki

In a May 2010 blog post, I featured a new social media web site called PatientsLikeMe which allows patients to compare medical notes with each other. It also allows patients to search for each other and provides a forum where they can create a sense of community.

In February, PatientsLikeMe upgraded its site and added a bunch of new features including automatically adding patients to forums with other patients with similar conditions. They’ve also made it easier to measure and track how you are feeling and share that information with others.

If you are a kidney patient, especially a transplant recipient, I encourage you to check out the site.

PatientsLikeMeConditions

New condition tracking page. Image from PatientsLikeMe

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One thing that PatientsLikeMe is missing is the ability to communicate with other patients in real-time, using chat. To address this need for instant feedback from fellow patients there is a site called HealCam.

HealCam was developed by a California anesthesiologist named Michael Ostrovsky. Dr. Ostrovsky modeled HealCam on ChatRoulette. The difference is that ChatRoulette seems to be a rather pointless game while HealCam is intended to be a tool to help both participants cope with their condition.

One problem with HealCam is that even though it has been around for almost a year, very few people have heard of it. For instance, when I signed on, I was the only participant. Unless HealCam can increase usage, it will languish. Perhaps it should not be a standalone operation and just become a feature within a site such as PatientsLikeMe.

HealCam

The HealCam user interface is clean and simple. Image from HealCam

by George Taniwaki

About 120 live donor kidney transplants occur every week in the U.S. Including my own, I know of three donors having surgeries within a nine-day span. That’s sort of a coincidence, but not by much. Similarly, about 250 nondirected donor transplants (cases where the donor does not have an intended recipient in mind and does not know the recipient prior to surgery) occur in the U.S. every year. Including myself, I know the names of about ten people who have or will donate anonymously in 2010. That’s a pretty high proportion of the total and definitely not a coincidence. I learned about most of these people because of research I conduct for this blog. And through the magic of the Internet, I have communicated with a few of them via email.

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I’m not a big Facebook user. I do check it several times a week, but post comments less than once a week. I don’t add friends on a regular basis and only have 42 total. But today I realized that including myself, my circle of Facebook friends includes 4 kidney donors. That’s not really a coincidence, since I’ve been seeking out advice and support from other kidney donors as part of my effort to assist kidney patients find live donors. And Facebook is a convenient way for us to stay in touch. But it’s still an oddly high ratio. I’m sure there are lots of Facebook users who have similarly small circles of friends that are connected by very interesting and rare associations.

by George Taniwaki

I’ve been looking at other blogs by kidney donors and came across one by Josh Rinehults, who will be donating his kidney to a former coworker later this month. There are not a lot of entries, but it’s really good.

He also has a countdown clock showing the number of days, hours, minutes, and seconds to his surgery. It’s sort of exhilarating and creepy at the same time. You can read his blog and if you go within the next eleven days, see the clock in action at The Kidney Project.

KidneyProjectClock

Image from The Kidney Project

I’ll be doing a review of kidney transplant blogs in an upcoming entry.

[Update: The Kidney Project has a Facebook page with comments.]

by George Taniwaki

A group from Swedish Medical Center (a transplant center in Seattle) and LifeCenter Northwest (the organ procurement organization serving Alaska, Northern Idaho, Montana, and Washington) climbed to the summit of Mt. Rainier yesterday and held a live webcast and chat.

It was all done as part of an effort to educate the public on the importance of becoming an organ donor.

SwedishUstream

Video still from Swedish Medical Center

I missed the webcast, but I definitely support the effort. If you haven’t registered to be an organ donor, do it today. It only takes a few minutes. Just go to Donate Life website and register with the state where you live. Remember to tell your family about your decision. If you have an iPhone, you can download the DonateLives app.

My quest to find a restaurant that serves fresh huitlacoche continues unabated. (I’ll admit my so-called quest has been pretty lackadaisical and sporadic.) My latest failure is El Sabor de Oaxaca in Pioneer Square which received a glowing review in the Stranger in Apr 2008. Alas, navigating to its website gives a 404 not found error. And a review on Yelp dated Jun 2009 says, “This place went out of business or moved. Guajillo’s is now at this location…”

And while Guajillo’s menu displays some tasty items, it does not serve huitlacoche. But then I found another Yelp review dated Jan 2010 that says, “This place is now closed :(“ Oh well.

If you’re not sure what huitlacoche is, check this description at Steve, Don’t Eat it!, a feature of a blog called TheSneeze. I think Steve would have liked it better if he tasted the fresh version rather than the canned stuff. I tried canned huitlacoche a few years ago and found it as appealing as canned spinach. It was overcooked and gooey with the texture of mush, and had an odd flavor. It was not firm with a nutty aromatic flavor like good blue corn smut should have. Fresh huitlacoche looks like this and is quite delicious.

Tortilla_Huitlacoche  Delectable huitlacoche. Photo from Wikipedia

I became an aficionado of huitlacoche during a vacation in Mexico City several years ago. I ended up having it at two different restaurants and liked it both times. In each case, it was offered by the waiter when I asked for a recommendation. Given what it is, I’m surprised they offered it to a gringo. But I’m glad they did. (Although, maybe they just wanted to see my reaction.)

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While perusing TheSneeze blog, I found a fascinating post regarding Steve’s father’s habit of drawing faces on cakes. He investigates his father’s self-taught art ability (or lack thereof) and accidentally discovers the original source materials with the help of several blog readers. This shows just how the Internet has changed everything. That’s right, because of the web, we can connect with complete strangers and learn extensive details about topics we previously would have just considered useless, random time killers. Now, if I could just find that restaurant…

htdafcompare    F cartoon. Image from TheSneeze