Amazing work!
Patient and Community Engagement Lead, Health and Science Writer, TED fellow, Patient Advocate
A lot of elements that make for good engagement of people with lived experience (PWLE) are very personalized, including: relationship building and maintenance between the PWLE and research team, setting expectations and working practices. Much of my time involves working with researchers to plan out and help them run effective PWLE engagement strategies that are mutually beneficial to both the research team and the PWLE involved. But for effective PWLE engagement on an institutional level, we also have to make sure that needed processes, paperwork and forms are accessible and most importantly, easy to use! For example, institutional paperwork often has language which is not particularly accessible and/or an abundance of legal and technical terminology. Therefore as the amount, types and depth of PWLE engagement we do increases rapidly, a less-obvious part of my job is working with colleagues from several different departments on an institutional level to make sure the internal processes we use are designed with PWLE in mind. Today, after consultations with many of our researchers and PWLE that they engage with and substantial work from legal colleagues, we launched a new contracting form at Women's College Hospital specifically designed to formalize a research engagement between PWLE and research teams. The agreement acts as an important reference point for both PWLE and researchers as to the responsibilities of each party, expected involvement of the PWLE on the specific project and formalizes aspects like financial compensation including amount and payment frequency. Highlights: - We removed over 50% of the words from the non-specific template agreement which was previously used for PWLEs. - We removed some parts entirely that were not relevant for engagements with PWLE. - We removed as much legal language as possible and where legal terms were required, we replaced them with simpler language with the same meaning. - We added in fillable options to integrate providing compensation to the PWLE into the agreement for full transparency. This may seem like a less-exciting thing to post about than stories about the essential contributions of PWLE in research, but excessive red-tape and processes not suitable for PWLE engagement in institutions can severely limit researchers who want to engage PWLE - hampering research teams and limiting the impact and applicability of the work. We must always work on removing and reducing these barriers to PWLE engagement, alongside building, maintaining and strengthening working relationships between PWLE and researchers.