Frank and Rhene

Patient and caregiver

Frank and Rhene are a retired, married couple who love to travel. In their working lives, Frank was an accountant and Rhene worked as a lab technician. Frank has been dealing with health problems for many years and has developed a strong relationship with his doctor. Frank and Rhene were both eager to get involved in a small-scale research project that their provider was involved with as a clinician-researcher. Frank and Rhene were engaged as a patient-caregiver couple in the project, and were later asked to join a large multi-country study as patient/caregiver advisors. Involvement came with a few challenges, including a lack of information and training related to how research works, and how the health care system is structured. They suggest that training be provided to patients/caregivers so that they can helpwithresearch in meaningful ways. Despite these challenges, they enjoyed the experience and made lasting friendships with other patients/caregivers and researchers. They also suggest that patients/caregivers should first ask questions to work through how they might be involved in a research project and consider whether their involvement would be meaningful and impactful on the research and outcomes. 

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• Learning From Others – Frank & Rhene
  Frank & Rhene became friends with the researchers they worked with
• Impact on Research – Frank & Rhene
  Frank and Rhene worry that patients and caregivers are asked to be the “guinea pigs” of patient engagement.
• Challenging Experiences – Frank & Rhene
  Frand & Rhene did not feel that their roles were well communicated to them by the research team at the outset
• Role Determination – Frank & Rhene
  
• Motivations – Frank & Rhene (2)
  
• Role determination – Frank & Rhene
  Frank and Rhene wished that their role had been explained to the whole research group
• Motivations – Frank & Rhene
  Frank and Rhene would consider future patient partner opportunities if they feel worthwhile
• Developing partnerships – Frank & Rhene
  Frank and Rhene feel that caregivers should be considered more often for partnerships
• Path to involvement – Frank & Rhene
  As a patient-caregiver duo, Frank & Rhene’s responsibilities as patient advisors evolved over time