One of Amy’s children had surgery before they turned two years old. A year later, she joined the family advisory council at her paediatric hospital where she has been involved in trying to engage more with the community, but also with researchers. Being a visual minority herself, Amy thinks it is essential that more effort is put into including a variety of people in patient engagement initiatives. If these groups are not present as partners or participants, then they will also not be able to benefit from results that are now largely based on data with white European background. She feels it is important to give people the choice about how much to be involved, and to be very sensitive to the power imbalance between researchers and patients or caregivers. Amy thinks that there are challenges to be overcome, such as when patients are only engaged to ensure ‘good’ representation, or to ensure that funding requirements are respected. She hopes that in the future, the diversity and inclusion of patients engaged in research and improvement efforts will improve.
- Diversity – AmyWithout more diversity, Amy feels we can’t challenge the status quo
- Advice to others – AmyAmy suggests that researchers should consider holding a community event or using social media to reach out to patients
- Valuing contributions – AmyAmy feels that payment is a question of equity but should be approached sensibly
- Developing partnerships – AmyTake advantage of social media to find patients partners, suggests Amy