Had my first meeting with what will become the Patient Research Council for the Children's Hospital. We're designing a curriculum to teach our patient-advocates about the process of clinical research so that they are able to help investigators design observational and interventional protocols that patients will feel good about and follow to the letter. There's a systemic problem in pediatric clinical research, it's rare for investigators to finish a study with more than 50% of the patients they started with. In general, pediatric research has a tendency to produce spotty, low quality data and patient dissatisfaction is comparatively high. My groups goal is to bring satisfaction up and make the process less stressful for everyone involved by involving educated patient-advocates throughout the process of study design and initiation.

Over the course of this meeting I brought up a draft of a system I had been working on to evaluate a clinical trials patient feasibility. How many hours they need to commit to the project at what frequency. What parts of the process are investigator/investigatory site initiated, what parts are patient initiated, travel requirements, possible Adverse Events, possible lasting effects post-protocol, stuff like that, and they LOVED IT.

I've been asked to present my 'Patient Feasibility Assessment Tool' to an internal board that funds Research Methods Improvement, the head of the department of Health Sciences Education, and apply for a grant from the Patient Centered Outcomes Research Institute to see if we can get funding to develop this project further. As it stands, we have ~400 'accredited' patient-advocates who are supposed to give feedback on clinical trials design, but at the moment their training and knowledge is nonstandard and spotty at the very best, and PI's don't put much stock in the feedback they get, they just see it as a step in the process of getting their study initiated. Our dream would be that a PA or board of PAs could be consulted when physicians are designing trials, so that the physicians are able to get a better understanding of what kinds of data they are able to get from the patient population, along what timetables, and what the obstacles are to study participation.

One of these days I'm going to just accept the workload I have and not keep looking for more things to do.

Edit*

It's nice to feel wanted. Like your ideas mean something, and have value. This meeting felt like common sense stuff to me but they gobbled it up and asked for more. I must be doing something right.