We developed these plain language summaries of published research papers to make our research accessible to the public, and patients and their families. Bookmark this page as we will be adding more over time!
Engaging young people with juvenile idiopathic arthritis in shared decision-making research
Shared decision-making, a process that involves the exchange of evidence-based information on treatment options and discussion of youth and families’ values and preferences. This way of making decisions is well-suited to making personalized pain management decisions. Our research program uses an integrated knowledge translation approach and involves patient partners with lived JIA experience, pediatric rheumatology health-care providers and researchers. This paper describes our process for engaging young people with JIA as partners in this research program, the impact of patient partner participation and lessons learned. Young people with JIA participated in different ways throughout the research program, consistent with the “Involve,” “Collaborate” and “Empower” levels noted in the International Association for Public Participation (IAP2) Spectrum of Participation. Our case study shows that young people with JIA, led by a knowledge broker with lived experience, and following agreed-upon but flexible terms of reference, can participate effectively and provide valuable perspectives in research on shared decision-making. You can access the entire paper at the following website: https://iktrn.ohri.ca/projects/casebook/ (click on volume 6).
Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: the JIA Option Map
Youth with juvenile idiopathic arthritis (JIA) often feel pain and they try many pain treatments such as medications, physical or psychological treatments. Choosing treatments can be hard for families and health care providers do not always provide information on pain treatments.
Our team is developing the JIA Option Map, a tool that presents information on pain treatments based on personal preferences. The tool brings patients through a five-step process where they explain current pain and treatments, identify preferences, and up to thirty pain treatments are suggested. More information is available about each pain treatment and patients are asked to develop a plan to use the treatments. The summary of the paper at the following website: https://link.springer.com/article/10.1007/s40271-020-00458-z
We co-developed and delivered this video with patient partners to provide a plain language explanation of the JIA Option Map – check it out!
Identifying potential barriers and solutions to patient partner compensation (payment) in research
Research teams that engage patients as partners sometimes provide compensation or payment to these patient partners for their contributions. There does not seem to be many resources that identify and tackle barriers to compensating patient partners. Based on our experiences as people who live with chronic conditions and who are patient partners, and as researchers who engage patient partners, we have identified eight barriers to compensating patient partners. We discuss each of these barriers: lack of awareness about patient partnership, institutional inflexibility, policy guidance from funders, compensation not prioritized in research budgets, leadership hesitancy to create a new system, culture on research teams, preconceived beliefs about patient partners’ skills and abilities, and expectations placed on patient partners. We illustrate these with real-life scenarios and we offer some solutions. Last, we issue a call to action to the global community that engages patient partners in their research teams to share resources and identify actions to overcome these barriers. By doing so, we can begin to create an online resource repository and help patient partners and researchers focus on working together rather than wasting energy navigating a system that is not well adapted to engaging patient partners. You can access the entire paper at the following website: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-022-00341-1