#improvecarenow #ahrq #qualityimprovement #hcsm #whatifhc #healthier2gether
A blog showcasing the work and interests of a former ePatient minor. Thoughts cover the gray area between pediatric and adult ePatients. Adolescents and young adults with chronic illnesses are conquering the virtual space and connecting through their shared experiences with the hope of helping them use their powers for good.
Jill is currently working toward her doctorate in clinical psychology at Rosalind Franklin University of Medicine and Science located outside of Chicago. She is passionate about speaking on networked natives and lifecasters with chronic disease, and is always happy to do so.
Her opinions are her own, always.
|Attention all patients with IBD:|
|I've been given a great and overwhelming opportunity to talk with the Institute of Medicine about how patients feel about clinical research and researchers sharing their protected health information. If you've ever participated or thought about participating in any kind of research study, I'd love to hear about your experiences - good, bad, and ugly.|
|Some key questions:|
|- Do you feel like you're fully aware of how researchers use your information to conduct clinical research?|
|- Do you understand the benefits of sharing your clinical data with researchers?|
|- If not, how can researchers better make sure that you are/do?|
|Looking forward to this important discussion with all of you..|
it’s like -
(Source: livingbeyondwithguts)@10 months ago with 53 notes