Objectives: First-person storytelling (FPS) has the potential to engage patients in changing behavior differently than didactic education. We assessed the prevalence of FPS in health education interventions; whether published FPS research has shown improvements in attitudinal, knowledge, behavioral, or clinical outcomes; and whether randomized controlled trials (RCTs) including FPS have shown more effectiveness than non-FPS interventions. Methods: A scoping review of FPS studies published before October 2019 in five medical databases was conducted. Results: 22 out of 10,363 identified studies met eligibility criteria. FPS has been studied primarily in cancer, diabetes, and hypertension. Of the 12 RCTs, compared to controls, patients receiving FPS interventions improved attitudes (N=6 studies) and knowledge (N=1), improved health behaviors like quitting smoking (N=6), and improved clinical outcomes like lowering A1C levels (N=3). Of the 10 non-RCT studies, compared to baseline assessments, patients who received FPS interventions had improved knowledge (N=1), attitudes (N=3), clinical outcomes (N=4), and improved health behaviors (N=7). Conclusion: While rarely used, FPS interventions can improve patient health attitudes and outcomes. Future research should expand FPS to new health areas and determine best practices for developing FPS interventions. Practice Implications: FPS may be particularly effective with low income patients and racial/ethnic minorities.

Context: Early tailored transplant education could help patients make informed transplant choices. Objective: We interviewed 40 patients with chronic kidney disease (CKD) stages 3 to 5, 13 support persons, and 10 providers at Kaiser Permanente Southern California to understand: (1) barriers to transplant education and (2) transplant educational preferences and recommendations based on CKD stage and primary language spoken. Design: A grounded theory analysis identified central themes related to transplant education barriers, preferences, and recommendations. Results: Barriers included confusion about diagnosis and when transplant may be necessary, concerns about transplant risks, families’ lack of transplant knowledge, financial burdens, transportation and scheduling, and the emotional overload of chronic illness. Hispanic and Spanish-speaking participants reported difficulty in understanding transplant education and medical mistrust. Recommendations included providing general education, earlier introduction to transplant, wait-listing information, transplant education for support persons, living donation education for patients and potential donors, opportunities to meet living donors and kidney recipients, information on the benefits of transplant, recovery, and available financial resources, flexible class scheduling, online and print resources, and more provider follow-up. Spanish-speaking and Hispanic participants recommended using bilingual educators, print, video, and online resources in Spanish, and culturally responsive education. Patients with CKD stages 3 to 4 wanted information on slowing disease progression and avoiding transplant. Conclusion: Increasing access to culturally responsive transplant education in multiple languages, pairing appropriate content to the disease stage, and increasing system-wide follow-up as the disease progresses might help patients make more informed choices about transplant.

Background It is not common for people to come across a living kidney donor, let alone consider whether they would ever donate a kidney themselves while they are alive. Narrative storytelling, the sharing of first-person narratives based on lived experience, may be an important way to improve education about living donor kidney transplants (LDKTs). Developing ways to easily standardize and disseminate diverse living donor stories using digital technology could inspire more people to consider becoming living donors and reduce the kidney shortage nationally. Objective This paper aimed to describe the development of the Living Donation Storytelling Project, a web-based digital library of living donation narratives from multiple audiences using video capture technology. Specifically, we aimed to describe the theoretical foundation and development of the library, a protocol to capture diverse storytellers, the characteristics and experiences of participating storytellers, and the frequency with which any ethical concerns about the content being shared emerged. Methods This study invited kidney transplant recipients who had received LDKTs, living donors, family members, and patients seeking LDKTs to record personal stories using video capture technology by answering a series of guided prompts on their computer or smartphone and answering questions about their filming experience. The digital software automatically spliced responses to open-ended prompts, creating a seamless story available for uploading to a web-based library and posting to social media. Each story was reviewed by a transplant professional for the disclosure of protected health information (PHI), pressuring others to donate, and medical inaccuracies. Disclosures were edited. Results This study recruited diverse storytellers through social media, support groups, churches, and transplant programs. Of the 137 storytellers who completed the postsurvey, 105/137 (76.6%) were white and 99/137 (72.2%) were female. They spent 62.5 min, on average, recording their story, with a final median story length of 10 min (00:46 seconds to 32:16 min). A total of 94.8% (130/137) of storytellers were motivated by a desire to educate the public; 78.1% (107/137) were motivated to help more people become living donors; and 75.9% (104/137) were motivated to dispel myths. The ease of using the technology and telling their story varied, with the fear of being on film, emotional difficulty talking about their experiences, and some technological barriers being reported. PHI, most commonly surnames and transplant center names, was present in 62.9% (85/135) of stories and was edited out. Conclusions With appropriate sensitivity to ensure diverse recruitment, ethical review of content, and support for storytellers, web-based storytelling platforms may be a cost-effective and convenient way to further engage patients and increase the curiosity of the public in learning more about the possibility of becoming living donors.

Purpose of Review To define patient advocacy and engagement for modern transplant and living donation care, particularly in light of the COVID-19 pandemic, describe the patient experience when transplant advocacy and engagement are optimized, and recommend opportunities for advocacy within three key areas: (1) including the patient voice in healthcare decisions and drug development, (2) access to the best evidence-based treatments and informed decision-making, and (3) present and future care innovations and policies. Recent Findings There are many avenues for transplant and living donation advocacy and engagement at the patient, provider, family, system, community, and policy levels. Key recommendations include the following: (1) simplifying education to be health literate, written at the appropriate reading level, culturally sensitive, and available in multiple languages and across many delivery platforms, (2) inviting transplant patients and donors to the conversation through advisory panels, consensus conferences, and new mediums like digital storytelling and patient-reported outcomes (PROs), (3) training all members of the health team to understand their role as advocates, and (4) advancing policies and programs that support the financial neutrality of living donation, and support recipients with the cost of immunosuppressive drugs. Key recommendations specific to the COVID-19 pandemic include providing up-to-date, health literate, concise information about preventing COVID-19 and accessing care including telehealth. Summary Enhancing advocacy and engagement for transplant patients and donors along the pre-to-post transplant/donation continuum can improve clinical outcomes and quality of life generally, and more so, in light of the COVID-19 pandemic.

<b><i>Background:</i></b> Policy changes including the Advancing American Kidney Health initiative and CMS’s ESRD Quality Incentive Program recommend increasing educational initiatives within dialysis centers to increase living kidney donor transplant (LDKT) rates. LDKT education can be challenging in dialysis centers due to limited provider time to educate, patient fears or reluctance to learn about LDKT, and difficulty educating potential living donors. New educational innovations that increase dialysis patient curiosity about pursuing LDKT are needed. <b><i>Summary:</i></b> Digital first-person storytelling, or the sharing of narratives by individuals in their own words, is a culturally competent, health literate, patient-driven approach to expanding patient understanding about LDKT that can supplement traditional educational strategies without additional burden for dialysis providers. The Living Donation Storytelling Project is an online digital library of over 150 video stories told by diverse kidney recipients, donors, those in search of a donor, and their family/friends. By honestly discussing how they overcame fears and challenges related to LDKT, these stories address sensitive topics that can be hard for providers to introduce by using easily accessible learning methodology that may better connect with racial/ethnic minorities, scared patients, and patients facing health literacy challenges. <b><i>Key Messages:</i></b> Supplementing traditional educational approaches with digital storytelling may help overcome time limitations in educating for busy providers, boost providers’ own knowledge about LDKT, serve as a free supplemental resource for patients, reduce fears and increase self-efficacy about transplant, help more patients to share about transplant with their social networks, and ultimately increase LDKT rates.