January 27, 2021
Amplifying the Patient Voice: Key Priorities and Opportunities for Improved Transplant and Living Donor Advocacy and Outcomes During COVID-19 and Beyond
By: Dave Lowe
When defining patient advocacy and engagement for modern transplant and living donation care, particularly in light of the COVID-19 pandemic, the authors describe the patient experience when transplant advocacy and engagement are optimized and recommend opportunities for advocacy in three key areas:
- Amplifying the patient voice in healthcare decisions and drug development
- Providing access to the best evidence-based treatments and informed decision-making
- Involvement in future care innovations and policies
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. If we are acting as true patient advocates and empowering patients in their own healthcare, this commitment will result in more patients surviving and thriving—the entire purpose of healthcare itself.
- Before transplant, optimal advocacy entails patients and donors feeling prepared and empowered to voice their concerns with their provider. In an optimal system, patients and donors may then conduct conversations with their clinical team that takes into consideration their physical, psychological, and financial wellbeing as well as all options for donation and treatment.
- Ideally, advocacy also empowers donors and recipients to make individualized, data-driven care plans for their recovery, including a long-term accommodation plan and a caregiver plan, that support their holistic wellness and health-related quality of life.
- Healthcare organizations, medical and professional schools should create a culture of patient advocacy by training all healthcare team members to view themselves as advocates and provide patients and donors with high quality education. This educational content must be health literate and culturally tailored in multiple languages so patients can self-advocate.
- At the policy level, efforts should continue to advance policies to make living donation financially neutral and overcome insurance-related barriers affecting access to transplant, telehealth and immunosuppressant medications.