. 2020 Jul 19;6:43. doi: 10.1186/s40900-020-00214-5

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		● Learn more about my disease		● Use the disease to do something constructively
	● Payback for treatment and care		● Spread knowledge about the disease
		● Use own experiences	● Spread knowledge about the disease	● Help others in the same situations
		● Gain knowledge about the use of PRO	● Gain insider-knowledge	● Help others in the same situations	● Take control over own disease
		● Gain knowledge about the use of PRO	● Gain insider-knowledge	● Help myself	● Take control over own disease
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 transitions between departments
					● Experiences with not getting answers to your questions
	● Experience of own illness
	● Experience of own illness	● Refine PRO
	● Used to deliver and contribute to groups				● Experiences with the disease, treatment, and follow-ups
	● Used to deliver and contribute to groups		● Knowledge about the process of being diagnosed with cancer		● Experiences with the disease, treatment, and follow-ups
Previous experience of involvement in research projects as a patient representative	None	None	None	None	None