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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
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Research Involvement and Engagement

ISSN: 2056-7529

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