Amplifying the Patient Voice: Key Priorities and Opportunities for Improved Transplant and Living Donor Advocacy and Out
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LIVE KIDNEY DONATION (KL LENTINE AND R SCHAFFER, SECTION EDITOR)
Amplifying the Patient Voice: Key Priorities and Opportunities for Improved Transplant and Living Donor Advocacy and Outcomes During COVID-19 and Beyond Amy D. Waterman 1,2 & Jim Gleason 3 & Louise Lerminiaux 4 & Emily H. Wood 1 Laurie A. Meacham 2 & Anne Osuji 2 & Rachyl Pines 2 & John D. Peipert 5,6
&
Alexander Berrios 2 &
# Springer Nature Switzerland AG 2020
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. Keywords Patient advocacy . Patient engagement . Transplant . Living donation . Patient education . COVID-19 This article is part of the Topical Collection on Live Kidney Donation * Rachyl Pines [email protected] Amy D. Waterman [email protected]
John D. Peipert [email protected] 1
Division of Nephrology, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, CA, USA
2
Terasaki Institute for Biomedical Innovation, University of California Los Angeles, Los Angeles, CA, USA
3
Transplant Recipients International, Beverly, NJ, USA
4
Transplant Diagnostics, Thermo Fisher Scientific, Los Angeles, CA, USA
Alexander Berrios [email protected]
5
Laurie A. Meacham [email protected]
Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern Unive
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