Table 4 Top challenges of consortium-patient advocacy group interactions
Principal investigators | Patient advocacy groups | |||
|---|---|---|---|---|
Benefit | No. of PIs selecting | % of 15 investigators answering question | No. of PAGs selecting | % of 26 PAGs answering question |
Attend Consortium investigator meetings | 1 | 7 % | 3 | 12 % |
Communicate Consortium activities within the patient community | 2 | 8 % | ||
Contribute to Consortium website design and content | 1 | 7 % | 1 | 4 % |
Help with patient recruitment for RDCRN studies | 1 | 7 % | 4 | 15 % |
Include Consortium activities, updates, or relevant sessions at PAG meetings | 1 | 4 % | ||
Other communication activities | 4 | 15 % | ||
Other research activities | 1 | 7 % | ||
Participate in Consortium conference calls | 2 | 13 % | 3 | 12 % |
Provide administrative support to Consortium | 1 | 7 % | ||
Provide direct funding to the Consortium | 4 | 27 % | 1 | 4 % |
Provide funding or other support to PAGs | 1 | 7 % | ||
Provide funding support for Consortium meetings/activities | 1 | 7 % | ||
Provide partial or full funding for Consortium trainees | 2 | 13 % | 1 | 4 % |
Received funding or other support from Consortium | 2 | 8 % | ||
Review protocols and provide substantive input on study design | 2 | 13 % | 6 | 23 % |
Review study forms and other related documents | 1 | 7 % | 4 | 15 % |