All entries on this initial Pathway tool were submitted by the original ACTion Council members. We are relying on Patient Organizations (POs), researchers, universities, rheumatologists, patient research partners, and industry to submit additional 'firsts', history, guidance, tools, recommendations, case studies, and Concept of Patient Involvement.
This Pathway is not intended to be a project repository or database of stakeholders who contribute to this space. It is intended to be a tool that those designing research projects can use to track key initiatives that have shaped patient-research collaboration in our community and any examples deriving from those efforts.
Submissions must:
- Be relevant to advancing patient engagement in rheumatology research. While some entries are not rheumatology specific (for example, those conducted by the Food & Drug Administration or European Medicines Agency), they are relevant to the Pathway because the work done in those programs led to rheumatology research initiatives.
- Either be a 'first' or pivotal milestone from which other projects evolved. For example, for the first time in 2002, OMERACT (Outcome Measures in Rheumatology) invited patients to participate alongside researchers and rheumatologists. As a result, guidance regarding how to include patient research partners has been published and numerous patient-involved papers have been published.
- If the entry is not only historical context it must include a tangible takeaway (guidance to download, case study or publication that demonstrates successes or challenges, etc.). We cannot accept projects without resources that can be used by others to learn how to improve their inclusion of patients in rheumatology research.
Since all submissions must directly evolve from a historical entry or pivotal milestone, your submission will need to connect in some way to the evolution of patient-involvement in rheumatology research. If you are able to identify projects or guidance that were built upon to complete your project, please include these in your submission.
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Ready? Keep in mind that the Pathway is NOT a repository of all work done in the patient included rheumatology research space. Your submission must include something tangible that users of the tool can learn from or build on (lessons learned report, guidance development, unique method of engagement, etc) and it must be relevant to patient-included rheumatology research.
Submissions must include either:
1. A milestone in history citing the evolution of patient involvement in rheum research (example, 1998 the first inclusion of patient involvement in Canada, with details).
2. An effort from which patient included rheum research evolved (example, Patient Centered Outcomes Research guidance). If you are submitting a project that is not specific to rheumatology, you must also include at least one example of a patient-included rheumatology research project that built on your efforts.
3. A case study/report or additional recommendations/guidance that builds on #2 and IS specific to the patient included rheum research space. (i.e., it must include something others can learn from/build on).
4. A novel first - something done in patient included rheumatology research that is a new method, guideline, process, context, etc.
5. A Concept of Patient Involvement (CoPI) that has a definition or guidance that can be added to our CoPI glossary.
Your email address is required so we can contact you for any additional information that may be needed and to update you on the progress of your submission. Please provide as many details as possible, including what about your project can be used for others to learn from or build on.
