Table 2 Characteristics of patient representatives
Patient 1 | Patient 2 | Patient 3 | Patient 4 | Patient 5 | |
|---|---|---|---|---|---|
Gender | Male | Male | Male | Female | Female |
Age at project initiation | 65 | 65 | 62 | 52 | 49 |
Work-life at project initiation | Self-employed, former director | Director in own company | Retired, receiving a special pension | Nurse | Social educator |
Cohabiting | Married | Married | Married | Unknown | Married |
Diagnosed with metastatic melanoma | 6 years | 5 years | 2 months | 1½ years | 4 months |
Current treatment or place in course of the disease | First-line treatment for 3 years. Routine appointments every 4th week | Currently off treatment after receiving 3 different lines of anti-cancer treatment. Routine appointments every 3rd month | First-line treatment for two months. Routine appointments every 3rd week | Second-line treatment for the last 8 months. Routine appointments every 4th week | First-line treatment for four months. Routine appointments every 3rd week |
Motivation for joining the advisory group | ● Curiosity | ● Gain insights into how patients can contribute to making a better consultation | ● Learn more about my disease | ● Help eliminate chaotic feelings for other | ● Help other |
● Use own experiences | ● Use the disease to do something constructively | ||||
● Payback for treatment and care | ● Spread knowledge about the disease | ||||
● Use own experiences | ● Help others in the same situations | ||||
● Gain knowledge about the use of PRO | ● Gain insider-knowledge | ● Take control over own disease | |||
● Help myself | |||||
Self-assessed potential contributions | ● Experience and theoretical knowledge of questionnaires | ● Personal experiences with PRO | ● How it feels to be a patient | ● Experiences with cancer treatment | ● Experiences with transitions between departments |
● Ability to help draw up PRO with high value for patients | ● Knowledge about psychological issues connected to metastatic melanoma | ● I never give up | |||
● Experiences with not getting answers to your questions | |||||
● Experience of own illness | |||||
● Refine PRO | |||||
● Used to deliver and contribute to groups | ● Experiences with the disease, treatment, and follow-ups | ||||
● Knowledge about the process of being diagnosed with cancer | |||||
Previous experience of involvement in research projects as a patient representative | None | None | None | None | None |