Plantree has just released a very nice toolkit for PFACS and others who want to increase patient engagement in research at all levels. Here is the link.
Here is the table of contents:
It is just so clear to me that research that includes the patient perspective will be far better — if only because it will help ensue that the outcomes measured are those that matter to patients as well as reserchers.
Disclosure, I helped and get an out-of-date photo in it!