Social media and organ donation: Ethically navigating the next frontier

Henderson, Macey L.; Clayville, Kristel; Fisher, Jonathan S.; Kuntz, Kristin; Mysel, H.; Purnell, Tanjala S.; Schaffer, Randolph; Sherman, Laurence A.; Willock, E. P.; Gordon, Elisa J.

doi:10.1111/ajt.14444

Cited by 41 publications

(43 citation statements)

References 23 publications

(27 reference statements)

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“…In medical ethics, organ transplants are commonly cited in discussions of resource allocation, justice, and desert—the same ethical concepts that are most often evoked in the crowdfunding literature. Social media has been used extensively to match donors and recipients, and substantial ethical consideration has been given to this practice . Moreover, transplant surgeries are highly expensive, even for patients with medical insurance .…”

Section: Discussionmentioning

confidence: 99%

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Medical crowdfunding for organ transplantation

Durand

Peters

Eltorai

et al. 2018

Clinical Transplantation

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An increasing number of patients and families are utilizing online crowdfunding to support their medical expenses related to organ transplantation. The factors influencing the success of crowdfunding campaigns are poorly understood. Crowdfunding campaigns were abstracted from a popular crowdfunding web site. Campaigns were included if they were actively accepting donations to fund medical expenses related to transplantation of selected organs. The primary outcome measure was total amount raised among successful campaigns receiving at least one donation. Bivariate and multivariate analyses were performed on various campaign characteristics. A total of 850 campaigns were analyzed. Kidney transplant campaigns were most common (40.5%), followed by liver (33.3%), lung (12.2%), heart (11.3%), and multiorgan (2.7%). 69.1% of campaigns received any donation, and among these, the mean amount raised was $3664 (median $1175). The following factors were significantly associated with amount raised: more positive emotional sentiment in the campaign description (+2.6% per AFINN unit, P < .001), longer campaign description length (+2.4% per 100 characters, P = .001), higher goal amount (+0.6% per $1000 of goal amount, P = .004), and third-person description perspective (+131% vs first person, P < .001). Physicians will likely encounter medical crowdfunding with increasing frequency as it continues to grow in popularity among their patients.

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Section: Discussionmentioning

confidence: 99%

“…Social media has been used extensively to match donors and recipients, and substantial ethical consideration has been given to this practice. 21 Moreover, transplant surgeries are highly expensive, even for patients with medical insurance. [22][23][24][25][26] The Children's Organ…”

Section: Shares and Updates Analysismentioning

confidence: 99%

Medical crowdfunding for organ transplantation

Durand

Peters

Eltorai

et al. 2018

Clinical Transplantation

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“…35 First, transplant programs can help vet the factual basis of online information when patients begin to consider their options. This is particularly important given the amount of information – and misinformation – about living donation accessible on the internet.…”

Section: Educational Program Summaries and Evidencementioning

confidence: 99%

Strategies for Increasing Knowledge, Communication, and Access to Living Donor Transplantation: an Evidence Review to Inform Patient Education

Hunt¹,

Rodrigue

Dew

et al. 2018

Curr Transpl Rep

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Purpose of review Inadequate knowledge of the benefits, risks and opportunities for living donation is an important, potentially modifiable barrier to living donor transplantation. We assessed the current state of the evidence regarding strategies to increase knowledge, communication and access to living donor transplantation, as reported in peer-reviewed medical literature. Recent Findings Nineteen studies were reviewed, categorized as programs evaluated in randomized controlled trials (8 studies) and programs supported by observational (non-randomized) studies (11 studies). Content extraction demonstrated that comprehensive education about living donation and living donor transplantation involves multiple learners – the transplant candidate, potential living donors, and social support networks – and requires communicating complex information about the risks and benefits of donation, transplantation and alternative therapies to these different audiences. Transplant centers can help transplant patients learn about living donor transplantation through a variety of formats and modalities, including center-based, home-based and remote technology-based education, outreach to dialysis centers, and social media. Evaluation of these strategies and program themes informed a new Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) public education brochure. Summary Increasing transplant candidate knowledge and comfort in talking about living donation and transplantation can reduce educational barriers to pursuit of living donor transplants. Ongoing efforts are needed to develop, refine and disseminate educational programs to help improve transplant access for more patients in need of organ donors.

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“…row totals) by the total number of programs who responded to the question, such that percentages reflect proportions of respondents, as per previous methods. [19][20][21][22] For questions about DAA therapy, we excluded respondents who reported their program did not perform DHCV NAT+ transplantation for uninfected recipients from the denominator. For questions where participants were asked to "select all that apply," the denominator for calculating percentages was the number of participants responding to that question.…”

Section: Discussionmentioning

confidence: 99%

Survey of Clinician Opinions on Kidney Transplantation from Hepatitis C Virus Positive Donors: Identifying and Overcoming Barriers

et al. 2020

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Background: Transplant practices related to use of organs from Hepatitis C virus infected donors (DHCV+) is evolving rapidly. Methods: We surveyed U.S. kidney transplant programs by email and professional society listserv postings between 7/19-1/20 to assess attitudes, management strategies, and barriers related to use of viremic (nucleic acid testing (NAT)+) donor organs in HCV uninfected recipients. Results: Staff at 112 unique programs responded, representing 54% of U.S. adult kidney transplant programs and 69% of adult deceased donor kidney transplant volume in 2019. Most survey respondents were transplant nephrologists (46%) or surgeons (43%). Among responding programs, 67% currently transplant DHCV antibody+/NAT-organs under a clinical protocol or as standard of care. By comparison, only 58% offer DHCV NAT+ kidney transplant to HCV-recipients, including 35% under clinical protocols, 14% as standard of care, and 9% under research protocols. Following transplant of DHCV NAT+ organs to uninfected recipients, 53% start direct acting antiviral agent (DAA) therapy after discharge and documented viremia. Viral monitoring protocols after DHCV NAT+ to HCV uninfected recipient kidney transplantation varied substantially. 56% of programs performing these transplants report having an institutional plan to provide DAA treatment if declined by the recipient's insurance. Respondents felt a mean decrease in waiting time of >18 months (range 0-60) justifies the practice. Program concerns related to use of DHCV NAT+ kidneys include insurance coverage concerns (72%), cost (60%), and perceived risk of transmitting resistant infection (44%). Conclusions: Addressing knowledge about safety and logistical/financial barriers related to use of DHCV NAT+ kidney transplantation for HCV uninfected recipients may help reduced discards and expand the organ supply.

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Social media and organ donation: Ethically navigating the next frontier

Cited by 41 publications

References 23 publications

Medical crowdfunding for organ transplantation

Medical crowdfunding for organ transplantation

Strategies for Increasing Knowledge, Communication, and Access to Living Donor Transplantation: an Evidence Review to Inform Patient Education

Survey of Clinician Opinions on Kidney Transplantation from Hepatitis C Virus Positive Donors: Identifying and Overcoming Barriers

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