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Table 2 Characteristics of patient representatives

From: The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial

  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