 The next speaker is Dr. Lisa Gordon, Associate Professor in the Center for Healthcare Studies and Comprehensive Transplant Center and the Department of Surgery at Northwestern University Feinberg School of Medicine. Her research interests include ethics of organ transplantation and donation, health disparities and access to healthcare and health outcomes and form consent, self-care, and chronic illness management. Dr. Gordon has received funding from NIH in the form of NIDDK, NIAID, NINR, and HRSA. She's currently the vice chair of the UNOS Ethics Committee, or are you chair? Not yet, okay. Still vice chair of the UNOS Ethics Committee, member of the UNOS Policy Oversight Committee and Treasurer of the American Society for Bioethics and Humanities and Associate Editor for the American Journal of Transplantation. Today she's going to discuss, we must inform the public, a pilot mass media campaign on living kidney donation and the ethics of promotion. Good afternoon. Thank you so much, Mark, for having me and, of course, the McLean Center, but also, Mark, thank you for your accommodations to really appreciate that. Okay. I see a bottle of water here, but I think it was from the last person. Would you mind just? Thank you so much. All right, great. Okay. All right, so I gotta acknowledge my disclosure is no relevant financial relationships. Okay. So what I wanna talk about today is a couple different things that all seem to interconnect in my mind. I'll cover mass media campaigns that have been done in organ donation, as well as describe a pilot mass and social media campaign that I've conducted on living donation here in Chicago Lam, as well as talk about some of the ethics of public education and the idea of promotion, living donor promotion, and why that makes me so uncomfortable. Okay. So right now, the transplant community is prioritizing a number of strategies to increase living donation, and that's because of the organ shortage, as you know, their long waiting times, patient death, and as well, living donation is the treatment of choice considering that it confers better graft survival, patient survival, even quality of life compared to deceased donation. And a couple years ago, the American Society of Transplantation's live donor community of practice put together a consensus conference. I was delighted to be a member of that, and one of the key points that they're trying to convey is the need to overcome barriers to living donation. The prior speakers have touched on the financial barriers, and that's just one of them. So a number of strategies include things like bills to remove the financial disincentives to living donation. There are bills in the Congress now. There have been a number of interventions, decision aids, such as these indicated here. Certainly, the project acts by Kim Areola, Jim Rod Riggs, house calls, doing education in the home setting, I'll refer to that again later, Hopkins Champions Program, helping potential recipients find a living donor, and so on. And a key problem is that very few strategies involve mass or social media campaigns, and there's a very big need for a mass media campaign on living donation. So first of all, the general public has been exposed very, very little to the opportunity of living donation and its risks and benefits. There have been very few campaigns for the public about living donation. Most of the campaigns are driven by organ procurement organizations, or even DMVs, but OPOs, they really focus on deceased donation, right? And I've talked to various OPO organizers, presidents, about, gee, can we change this a little bit? Is it possible for OPOs to incorporate education about living donation in their public education messaging? It's kind of hard. It's not exactly where the money's going to coming from, and so on. And another key issue for me is that there was a Gallup poll that in 2012 found that only 56% of people reported that they've been exposed to information about organ donation in the past year, and that's down from 63% in 2005. So, you know, living donation rates have been declining over the past decade, and certainly there seems to be consistency or along with people's awareness of living donation as an option. And so the AST, the consensus conference I referred to momentarily, mentioned that greater public education about living kidney donation is needed. So, in general, mass and social media campaigns can promote public health. They can be quite effective. They've been effective in reducing smoking, increasing physical activity as well as cancer prevention. They do this by increasing knowledge and healthy behaviors, as well as being effective by having a wide reach and a wide appeal and being quite cost-effective. Now, with regard to mass and social media campaigns on donation, I'm really focusing here on mass media because it's only very recently that social media has really come into the foray here, but there has been quite a lot on mass media campaigns on deceased donation, a couple on living donation, the ones on living donation, most of them occurred several years ago, maybe about a decade ago, for some of them, most of them focused on Hispanics being a culturally targeted approach. And the good news is that they are generally effective in increasing knowledge about deceased and living donation five to 8%. So, several years ago I was fortunate enough to have a HRSA grant in which I developed a website to foster greater public awareness. This website, I think I've spoken here about it in the past, I won't go on and on about it, but the website's called Inform Mate, Inform Yourself About Organ Living Donor Transplantation, and it's culturally targeted to Hispanics. And so at the end of that funding period, this is last fall, we conducted a pilot mass and social media campaign to see if we could raise awareness about living donor kidney transplantation, targeting the Hispanic population. And this was conducted in Chicago land predominantly, but also throughout Illinois. Our messages were bilingual, culturally targeted. We addressed key knowledge about living donor kidney transplantation as well as Hispanic transplant disparities. I'll mention a little bit more about Inform Mate, which is on the next slide. But our call to action, which I've learned about doing campaigns, is there's gotta be a call to action. There's gotta be something that people do after listening to public service announcements or advertisements on the side of a bus or on a train where we put these things. And our call to action was to encourage people to visit Inform Mate to learn more, okay? And we did our analysis by analyzing Google Analytics to evaluate the effectiveness of this call to action. Did people actually go to the website? Did it work? So here's just like the homepage of the Inform Mate website. You're free to go there, it's bilingual. And so our campaign used a variety of resources we had a press release back in like September. We produced a number of PSAs, public service announcements, 15, 30, and 60 second versions in English and Spanish. We had advertisements in Spanish newspapers on the CTA bus and train. We used the national, so my partner was the National Kidney Foundation of Illinois and we involved them in terms of sharing the advertisements on their Facebook page as well as Twitter and whatnot. We disseminated brochures and posters to dialysis centers throughout Illinois and to nephrologists throughout Illinois. And the link and a little blurb about Inform Mate was posted on the American Society of Transplantation, American Society of Transplant Surgeons, NKF, HRSA, and a variety of transplant centers web pages. So we're very excited about that. You might wonder, well, what were those messages like? So what I'm going to do is read for you what one of those 30 second messages stated. So these were, as I mentioned, in English and Spanish. The English ones were produced with a Spanish accent. I don't speak Spanish, so I'm just going to use my day to day accent. Okay, so here it goes. Did you know that patients with kidney failure have a greater risk of dying the longer they wait for a kidney transplant? More than 20,000 Hispanics are waiting for a kidney transplant nationally. To avoid the long wait, patients can get a kidney from a living donor which lasts longer than kidneys from deceased donors or dialysis. Visit Informatay to learn more about the benefits and risks of living kidney donation. So that's just about 30 seconds. Okay, so here a little bit about the results of our campaign. So compared to the pre and the post campaign periods, the campaign was effective. It increased the public's traffic to Informatay in terms of increasing the number of sessions as well as the number of visitors coming to the website. The pages that people came to the most were the sections on immigrant issues and financial issues which to me isn't very surprising because there's very little information out there on these topics. And so in general the findings suggested that the campaign's call to action was effective in increasing the Hispanic public's traffic to Informatay. We've recently published the findings from this campaign. And just in case you're wondering what Google Analytics looks like, here's a screenshot from it of the period during the campaign period. And so I'm wondering if this, is there a pointer in here? Perhaps, I don't want to mess with anything. Well, you'll see right here, sessions, the number of times people came here, the users is 7,000 page views, number of pages that they viewed on average, how long they spent, and so on. Okay, so overall I want to kind of transition here. The strategies to increase living donation have been mostly neutral. My intent with this website and this campaign has always been to stay neutral because I believe very strongly in presenting the risks and benefits of living donation in order to facilitate informed decision making. And so other strategies have also similarly sought to be neutral and avoid any kind of undo influence on potential living donors and as well as to maintain the public's trust. But I think that campaigns are becoming questionably not neutral. So, oops, there we go. So I need to thank my colleague, Macy Henderson, who shared these couple slides with me, this one and the next, helping to distill the differences between promotion, like promoting living donation and marketing and advertising. I'm not gonna read through them all, but I'll just point out, promotion can be defined as something that is done to make people aware of and something, aware of something and increase its sales or popularity. Okay, I mean that sounds kind of neutral. Advertising is a person or thing that shows how good or effective something is, marketing, a process, or a technique of promoting, selling, and distributing a product or service. Here's another. This is, another way of looking at the difference is that promotion is focusing on personal selling, sales promotions, public relations. That makes me a little bit less comfortable. And so there are a couple examples. I'm sure you've seen a whole bunch out there over the years, news media, share a whole number of news stories all the time. It's in our newspapers, on the news. Here's a transplant center. Excuse me, yeah, this is a transplant center sharing a story from Georgetown of how a living donor and recipient got together. This one is about the donor app from Hopkins and the champion program. I think this one might have skipped, yes. The kidney connection, this is a site for potential living donors and potential kidney transplant recipients who are waiting to communicate with each other, get to know each other. And as I mentioned before, news media runs many stories on our channels all the time. All right, so here's where I start to get a little concerned. Oh goodness, how much time do I have left? Three minutes? Okay, good. All right, so as I mentioned, there's been more and more use of social media to discuss the option of living donation and even I think to promote it, to get the word out, but even to encourage the public to consider donating a kidney. And the work by Peter Ries, who I respect greatly, he's the chair of the Ethics Committee. He and his colleague, Dr. Allen, they've put out a couple different ethical frameworks, a couple papers talking about how to encourage the public to consider donating a kidney. And one of them, they were saying how there needs to be a comprehensive strategy for transforming living donation and reconceptualizing living donation. I put some red flags by the ones that just don't sit quite right with me. One being recognizing end-stage renal disease as a shared public health problem. Another is reframing donation as an important form of service to one's community. And another that I think we need to really think hard about is countering portrayals in the media suggesting donation is exotic. They also put out an ethics framework, which I think really helped to move the discussion forward, stating that one can use like reason or non-argumentative forms of influence in order to encourage living donation. And by non-argumentative forms of influence, they're talking about a couple things, appeals to emotion, messenger effects, having like celebrities or peers help to move this forward, the champions, or social norms to get people to think that this is a normal thing to do like the big ask. And I think in prior sessions, we talked about the normalization. And I think we have to be careful about that kind of normalization of living donation because it reifies a very positive, safe perception of living donation. So I think what's still unresolved is the idea of emotional promoting of living donation. Is that ethically sound? I heard, I was at a conference last week, Dr. Testa. He had his conference at Baylor. And so I was on this panel and he asked, so do you think that when there are advertisements on the side of a glass saying, come to our transplant center, come and go for living donation? Does that project the idea that living donation is safe? And I was like really taken aback. I thought that was an excellent question. Also, Mary Amanda Dew was there on the panel next to me and we were talking later about, she's heard some anecdotal reports about how, you know, in Jim Rodree's home house calls program, those programs and other programs where families are supposed to get together for, you know, like an intervention to raise awareness about living donation and how family members aren't necessarily showing up to those. So as I heard Lainey talk at the first session today, about the onus of donating on the twin, I'm thinking we need the frame of that onus, I think has expanded from the twin to the family and now one social network and now culture, thinking about Megan's talk. And I think we have to be careful. As Dr. Shapiro asked about, are we making progress? Well, we're certainly expanding, we're making progress in the range of the vulnerability of people, I think, considering living donation. So I've already mentioned this and I'm over. So I just want to conclude by saying public education is still needed about living donation. I think we still need to engage in further ethical deliberation about how living donation is promoted. We need more balanced presentation of donor experiences out there. People don't feel comfortable sharing negative stories. They've told me directly, living donors have said that. So we need more of neutral understanding of living donation out there and we need ethical guidelines for the use of social media. Thank you. Thank you. Thank you.