Amplifying the Patient Voice: Key Priorities and Opportunities for Improved Transplant and Living Donor Advocacy and Outcomes During COVID-19 and Beyond

Abstract

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.

Patient Representatives’ Perspectives on Healthcare at the Time of COVID-19 and Suggestions for Care Redesign After the Pandemic: A Qualitative Study in Twenty-Four Countries

“…7,8 In particular, patients with chronic conditions could be a rich resource for optimising healthcare as they require continuous care. 9 Furthermore, insights from different countries could show a range of experiences with disparate strategies and practices. Besides the negative impact, the crisis could thus generate opportunities for future healthcare redesign.…”

Perspectives of solid organ transplant recipients on taking medications: Valuable research, just the beginning

“…This thoughtful review highlights an important body of research, which tries to incorporate patients' "voice" to inform care: a recognized goal in clinical medicine 2 and transplant care. 3 The Starzl Network of Excellence in Pediatric Transplantation (SNEPT), for example, recognizes the incorporation of patient's perspectives to inform clinical care as a top priority. 4 But the "patient's voice" is a slippery concept that is still being refined.…”

“…In this volume, Tang et al 1 synthesize 119 qualitative studies that sought to describe patient‐reported perceptions related to medication‐taking in solid organ transplant recipients. This thoughtful review highlights an important body of research, which tries to incorporate patients' “voice” to inform care: a recognized goal in clinical medicine 2 and transplant care 3 . The Starzl Network of Excellence in Pediatric Transplantation (SNEPT), for example, recognizes the incorporation of patient's perspectives to inform clinical care as a top priority 4 …”

Patient perspectives on healthcare at the time of COVID-19 and suggestions for care redesign after the pandemic: a qualitative study in all six WHO regions

“…Patient-centricity requires that we tailor interventions to patients' needs, uncover and understand the motivation for behaviour, and measure outcomes that matter to patients [7,8]. In particular, patients with chronic conditions could be a rich resource for optimising healthcare as they require continuous care [9]. Furthermore, insights from different countries could show a range of experiences with disparate strategies and practices.…”