Marc is an experienced caregiver who has collaborated with various research teams; one of his personal goals is to help improve care for patients and caregivers. Marc describes his collaborations with researchers as cordial, sincere and respectful in nature. At times, however, Marc has felt that his knowledge and experience were not adequately acknowledged by researchers. He believes it is important that researchers invite patients and caregivers to share their knowledge and experience and contribute equally as part of the team. Marc sometimes feels intimidated by the expertise of the researchers he works with on projects. For example, during a presentation, Marc used humor to let the audience know that he does not have research credentials, but that he brings his lived experience as his contribution. He now realizes that he should not have felt embarrassed that he did not have similar credentials as the researchers and feels proud of what he contributes to the research project. Marc believes that although patients and caregivers may feel their contributions to be relatively small, each contribution adds up and helps to create successful research outcomes. Overall, Marc feels that being a partner in research is an enriching and fascinating experience that can be full of surprises. He hopes to be involved for another few years and encourages anyone interested in getting involved in research to just go for it.
- Balancing time and commitments – 2 – MarcBeing a full-time caregiver made involvement difficult
- Balancing time and commitments – MarcMarc had more time to be involved when he was no longer a full-time caregiver
- Defining partnerships – MarcResearchers should ensure that patients understand what it means to be a patient partner and collaborate together on a project, suggests Marc
- Motivations – MarcMarc feels that his involvement in research has both personal and universal benefits for caregivers