Every year, the Can-SOLVE CKD Network conducts a survey to assess the overall experience of patient partners. We are pleased to share a summary report with the results of our 2018 survey in comparison to results from 2016 and 2017.
The 2018 survey was sent to all patient partners involved in network governance (i.e., Patient Council and other committees) and received a total of 17 responses (50% response rate).
Among the highlights of the 2018 survey responses:
- As a result of participating in Can-SOLVE CKD, patient partners feel strongly that they are better informed about kidney research in Canada and have greater trust in research.
- Almost all patient partners feel accepted as partners in the Can-SOLVE CKD Network and feel able to express their ideas freely.
- Respondents feel confident that their partnerships with researchers and health care professionals are advancing research and transforming care. The respondents also recognize that they are helping to influence change for patient engagement in research.
- Many respondents value the connections with fellow patient partners and researchers formed through their involvement. Some respondents feel empowered to share their lived experience in the research process.
- Compared to 2017, patient partners’ overall satisfaction with their involvement is significantly increased.
- Opportunities for improvement include:
- Enhance communications within the network
- Offer more opportunities for interaction between patient partners and researchers
- Provide broad updates on kidney research
The survey results will guide our efforts to enhance patient engagement across the Can-SOLVE CKD Network.