PARTNER Project Structure
Learning / Feedback Modules
- Module 1: What is patient-centered outcomes research (PCOR)?
- Module 2: How can I participate in PCOR research?
- Module 3: What makes a good PCOR question?
- Module 4: How can I make sure my voice is heard? How can we engage everyone in the PCOR process?
- Module 5: How can we choose meaningful patient-centered outcomes?
- Access Modules 1-5 on Jotform
- View the PARTNER manuscript published in the American Journal of Transplantation
Project Structure
Module 1: Participants
Patient Partners (n=59) | Providers (n=29) | |
Race | 3% Asian (2 people) 14% Black/African-American (8 people) 4.5% Mixed race (3 people) 3% Hispanic/Latinx (2 people) 75% White | 14% Asian 3.5% Black/African-American (1 person) 83% White |
Hispanic ethnicity | 8.5% (5 people) | 10% (3 people) |
Our family lives in a | 32% rural area 14% urban area 54% suburban area | |
Main source of insurance | 29% government-sponsored/public 71% private |
How long have you been on the transplant journey?
Patient Partners
How many years ago was your child’s/your first liver transplant?
Providers
How many years have you been providing healthcare for children with liver transplants?
Patient Partners (n=53) | Providers (n=32) |
51 parents/caregivers + 2 liver transplant recipients | 3 social workers/mental health providers 8 NP/RN/coordinators 17 MDs 3 admin/research coordinators 1 registered dietician |
3 months – 20 years after 1st liver transplant | 69% with >5 years experience in pediatric liver transplant |
2% Asian, 17% African-American, 11% Multi-Racial, 68% White 15% Latinx | 1 African-American, 1 Multi-Racial, 6 Asian 75% White 9% (n=3) Latinx |
26% rural, 13% urban, 60% suburban 38% public insurance, 62% private insurance |
Module 2: Participants
Patient Partners – how long have you been on the transplant journey?
Module 2 participants, by transplant center
Module 3: Participants
Patient Partners (n=47) | Providers (n=25) |
43 parents/caregivers 4 liver transplant recipients | 6 social workers/mental health providers 6 NP/RN/coordinators 10 MDs 3 admin/research coordinators |
8 mo– 23 yrs after 1st liver transplant 57% <5 years post-transplant | 56% with >5 years experience in pediatric liver transplant |
23% African-American, 6% Multi-Racial or Other, 64% White 9% Latinx | 84% White 3 Asian, 1 Multi-racial 1 Latinx |
23% rural, 36% urban, 41% suburban 36% public insurance, 40% private insurance | |
40% RealTimeClinic App 60% JotForm | 40% RealTimeClinic App 60% JotForm |
Patient Partners – how long have you been on the transplant journey?
Module 3 participants, by transplant center
Patient Partners (n=27) | Providers (n=29) |
27 parents/caregivers No liver transplant recipients | 4 social workers/mental health providers 9 NP/RN/coordinators 13 MDs 3 admin/research coordinators |
70% <5 years post-transplant | 55% with >5 years experience in pediatric liver transplant |
2 African-American, 4 Multi-Racial, 3 Asian, 1 Native American 19% Latinx | 66% White 10 Asian, 0 Multi-racial 2 Latinx |
19% rural, 33% urban, 48% suburban 30% public insurance, 70% private insurance | |
11% RealTimeClinic App 89% JotForm | 28% RealTimeClinic App 72% JotForm |
Module 4: Participants
Module 4 participants, by transplant center
Module 5: Participants
Patient Partners (n=68) | Providers (n=15) |
57 parents/caregiver 15 liver transplant recipients | 4 social workers/mental health providers 4 NP/RN/coordinators 7 MDs 1 admin/research coordinators 1 Pharmacist |
Years post-transplant 28% - <5 years 28% - 5-10 years 44% - 10+ years | 50% with >5 years experience in pediatric liver transplant |
7 African-American, 4 Multi-Racial, 3 Asian 10% Latinx | 50% White 3 Asian, 2 African-American, 1 Multi-racial 2 Latinx |
22% rural, 26% urban, 52% suburban 45% public insurance, 65% private insurance |
Module 5 participants, by transplant center
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