Patient Research Exchange

my expectations from this forum

Posted by giora on 06 June 2015 03:14 AM

As we all have agreed at our 1 st meeting last year this forum should be the platform that connects us, patients advocates from cross diseases and countries, to share experiences, knowledge on how to bring the patient’s voice into the process of research, drug development and clinical trials.
in order to make our voice stronger we need evidence and this can be obtained from Patients reported outcome- research projects that we as independent patients organization are planning and implemmenting.
i hope all of us can share here on this forum projects that we are involved with which will enable us to learn from each other.
thanks to every one who has worked hard to make this forum
CML Advocates Network

#1 | Posted by PRE_Admin on 08 June 2015 10:28 AM

Thank you for joining the discussion, Giora. We do hope that many interesting projects, case studies and experiences will be shared on this platform!

#2 | Posted by durhane on 14 June 2015 03:51 PM

I would love to see examples of “patient driven” or “patient developed” patient-reported outcomes or patient-reported outcome measures.  A lot of this still seems to be done by the traditional academic researchers and patients are there as a source of data or to validate but not as members of research teams. 

Also, as recently reported, PROMs are not really serving the purpose of improving communication at the point of care between clinician and patient. 

Perhaps PCORI (Patient-Centred Outcomes Research Institute) will change that will some of the projects funded but we have yet to see any outcomes from the projects.

#3 | Posted by rahul on 22 July 2015 12:34 PM

Hi. Since I am a thalassaemia patient and I just registered, I am hoping to learn about the latest developments and research that are underway towards the cure of the disease. I also look forward to be able to contribute towards a better future by being part of this initiative as I learn about it in any manner possible.