Lindsay Hendryx, Louisiana Clinical Data Research Network
Researcher
Stakeholders expressed concerns about the 12-month timeframe for producing the final report. While completing the research process understandably takes time, stakeholders mentioned concerns that after 12 months, "interest may have dissipated or the industry changed.)
My personal comments piggyback on what was discussed at the public forum hosted by PCORI on September 29. It seems it would be beneficial to all stakeholder groups if the final report and manuscript publication processes were somehow combined. This would reduce the number of onerous tasks on the research teams and could possibly produce public information on findings more quickly.
There is no mention of patient involvement in the review and translation process. To remain true to the mission of patient-centeredness and to optimize the knowledge and experience of patients, some considerations include:
-Inclusion of patients alongside researchers in the peer review process
-Involvement of patients in the translation process; also consider a rubric for research institution approval of PCORI translation: has this translation been reviewed by patient stakeholders at the institution where research was conducted? Is the lay abstract culturally accurate?
Other avenues of public posting should be strongly considered. One suggestion is that any clinic or community venue in which data is collected should be provided with a culturally appropriate, patient-friendly "report" that can be posted and available for patient and public use.
Patients and community members have expressed high levels of trust in the scientific process of research. However, several of our CHAB members and other patient stakeholders have expressed a necessity for research findings to become publicly available in a more timely manner. This should be taken into consideration for both patient and research stakeholders.
Very Well
Somewhat Clear
Somewhat Agree
I do agree with this process because I feel that peer review is essential to the validity of research, but I also wonder if there might be an "interim" stage, in which funded research is made available to the public (which they have expressed they want in a timely manner) but with a disclaimer that it is under peer review and pending final complete status.
These comments are a compilation of feedback provided by members of the LaCDRN Community Health Advisory Board, which is our patient representation in governance. Because of the length and literacy level of the proposal, we felt that a more patient-centered version was needed for fair communication with our patient/community stakeholders, so we drafted a summary (uploaded here). Stakeholders were given the option to respond to the summary or to the full proposal, which we disseminated. Our Clinician Board was provided the same documents, but provided no feedback to us; they may have responded directly to this comment form.
My personal comments piggyback on what was discussed at the public forum hosted by PCORI on September 29. It seems it would be beneficial to all stakeholder groups if the final report and manuscript publication processes were somehow combined. This would reduce the number of onerous tasks on the research teams and could possibly produce public information on findings more quickly.
-Inclusion of patients alongside researchers in the peer review process
-Involvement of patients in the translation process; also consider a rubric for research institution approval of PCORI translation: has this translation been reviewed by patient stakeholders at the institution where research was conducted? Is the lay abstract culturally accurate?