According to data from Organ Procurement and Transplantation Network, fewer than 6,000 people choosing to move forward as a living kidney donor in the US every year. Mandated tracking of living donors is limited to two years after donation. For these reasons, many prospective donors find it difficult and overwhelming to find information about the living kidney donor experience and long term outcomes. In addition to our medical teams, donors rely on anecdotal evidence from other living donors, those who have gone through the process before us, for reassurance and to get a better sense of what to really expect.
Deciding to become a living kidney donor, risking your own health to improve someone else’s, is a very personal and complicated decision that every donor and recipient pair must navigate with the support of their medical teams.
With the input from other living kidney donors, I created this survey to help share the perspectives of other donors and to help guide conversations that can be difficult or overwhelming. The intention is not to reinforce any particular perspective, but to simply create a better and more complete starting point where information can seem scarce.
Keep in mind that every donor’s experience, reasons for moving forward, and attitudes about donation may be different and are extremely personal. I’m grateful to the 300 living kidney donors who took the time to complete the survey and the donors who supported me in its creation.
Why Did I Create This Survey?
I donated my left kidney to my good friend’s sister on July 18, 2016. Before the surgery, I did a ton of research and made peace with my decision that it was a risk worth taking. Still, in a lot of ways I had no idea what I was getting into. For me, the process was incredibly stressful and difficult to navigate.
I am hopeful that medical advances, better options for prevention and treatment of end stage kidney disease, will make the need for living organ donation obsolete. It’s an imperfect solution. In the meantime, I do not envy anyone who is going through the process right now and would like to do something to help.
One of the first posts I read when I joined an online group for living kidney donors, and a theme I’ve noticed in many of posts since I joined, shared the concern that there are not many long term studies about living kidney donation. “We could create our own study…” another recent donor commented hopefully.
As a product manager, I have experience creating surveys and working with data. I loved the idea of applying that experience to a project so close to my heart. And the rest, as they say, is history.
How Did I Validate Respondents Were Living Kidney Donors?
Survey respondents were asked to self-identify as either a kidney donor, kidney recipient, prospective donor, or other. Respondents who selected anything other than living kidney donor were gently disqualified and their IP address was blocked from any attempts to retake the survey.
This project is not affiliated with any major research group and I was especially careful not to capture any personally identifiable information in the survey. That means there really is no way to prove that all survey respondents are actually living kidney donors. I trust the majority are. I did my best to control for that by being thoughtful about how I recruited participants.
How Did I Recruit Participants to Take The Survey?
On April 21, 2018, a group of living donors gathered at Cloud Gate in Chicago to attempt a Guinness Book World Record for the largest gathering of Living Organ Donors. Donors at the event were asked to provide a doctor’s note certifying that they were in fact Living Organ Donors. I started recruiting by capturing contact information from certified donors at that event. Only 14% of the survey respondents explicitly said they learned about the event at the Guinness Event, but more than 25% of the respondents can be traced back the link I shared via email to the list I created for that event.
I belong to one of the many closed Facebook groups for living donors to connect and share their experiences — that’s how I first learned about the Guinness Book event. I shared links and periodic updates about the survey over a three month period to drive awareness and engagement with the survey. I recruited other donors from the Guinness Event and Living Donors Online Facebook Group to help me get the word out in other donor groups they belong to.
I suspect there’s a huge overlap between donors who were at the Facebook event and donors who are active in the Facebook groups. 73% of the respondents say they learned about the survey from Facebook. Another 4% found the survey through a post I created on HealthUnlocked.
When Was This Survey Done?
Technically speaking, 322 people completed the survey between May 4, 2018 until August 10, 2018. Only 303 of them self-identified as living kidney donor while the 19 who were disqualified up front were a combination of transplant recipients, prospective kidney donors, and donor advocates. I hope everyone who is interested finds the results of this survey useful.
How Have Other Living Kidney Donors Contributed To This Project?
I solicited a group of reviewers through the Facebook groups to help inform the questions I asked and how I phrased it. About 10 living donors previewed the draft survey and shared their thoughts on everything from typos to suggestions on how to phrase things to ideas on what to ask.
While I was still in the survey design process, I collected email addresses through a simple Typeform survey and asked if the person was interested in getting involved. I used that list to share more targeted weekly updates about response rates and to request help getting the word out in other groups.
As the results started to reach scale, I would share small sneak peeks of the results to get reactions and to have a little dialog. I’m my best to represent some of the perspectives that were shared that way.
Finally, over the course of this project, I have been contacted by a few donors who have their own donor-related projects and wanted to figure out how we could partner. I had a bunch of really fascinating phone conversations and learned so much in the process. For better and for worse.
What Tools Did I Use?
I chose Survey Monkey because it is a well known and well-supported survey tool that is easy to customize and has a pretty good user experience for users taking the survey and me while I was building and analyzing the results. The survey was 125 questions in total and took an average of 16 minutes to complete. It was important to me that I find a tool that didn’t force people do complete it all in one sitting. I upgraded to the Advantage plan so that I could include logic to better customize the flow based on an individual’s responses.
The survey was not up and ready to go in time for the Living Donor Guinness Book Event, so I used a simple Typeform survey to capture email addresses so that I could notify those who were interested by email when it was. This was only place I captured personal information (e.g. email address and are you a living kidney donor) and I kept that information separate from the survey itself.
For the time being, I have been using Survey Monkey took to slice and dice the data to find interesting insights to share from the results. It’s helpful that the took helps be understand what data points are statistically significant and I’m using that as a guide. I would love to do more in terms of visualizing the data but for now Google Sheets is working just fine.
I welcome suggestions and help in making the information as accessible and easy to understand as possible. I think sometimes people forget that most living donors do not have the medical or academic degrees necessary to find and digest the information that is out there.
How Can You Help?
Even though the survey is complete, there is still plenty of room to help and collaborate.
I love the idea of this being a collaborative project. Sharing previews of the data as a way to spark a conversation amongst living donors has been one of the most rewarding parts so far. The people I have met and the conversations I have had along the way really is what it is all about.
First and foremost, if the information in this survey feels useful and you think it will be useful to other people — help me share it with the people you think it’d be most useful to.
If you are a researcher who wants to use the raw data or if there are particular topics that you want to elaborate on, I’m open to partnering in that way. At the end of the day, I want to this to be a starting point and am excited about what can become of it.