Center for Medical Technology Policy
Core Outcomes Sets in Effectiveness Trials: A Multi-Stakeholder Training and Development Workshop
Project Lead: Sean Tunis, MD, MSc
Follow up Summary to 2014 COMET Network Meeting
A voluntary online survey was released to all participants. Participants were asked to respond to five
open ended questions and five prompts on a scale of “Strongly Disagree” to “Strong Agree.” The below
summary reflects these survey responses.
Challenges & Best Practices in COS
All participants rated “Strongly Agree” or “Agree” that after the COMET Network Meeting, they had a
better understanding of:
•
•
Challenges in the development and use of COS in North America
Ways that COS developers, federal agencies, and other stakeholders can collaborate to promote
the development and use of COS
While most participants rated “Strongly Agree” or “Agree” to the following prompts, some participants
responded “Neutral” that after the COMET Network Meeting, they had a better understanding of:
•
•
Best practices in COS development methods
Best practices to engage patients and other stakeholders in the development of COS
Networking, Collaboration & Stakeholder Engagement
When asked what was most valuable about this meeting, participants focused largely on the networking
aspect. Generally, participants noted that it was valuable to discover the existing level of interest in COS
development, which was higher than many participants perceived prior to the meeting. Another
participant noted that it was helpful to see other disciplines and areas of medicine that have successfully
employed COS development. Furthermore, one participant noted the utility in learning how different
individuals conceptualize the term “core outcome sets” and to realize the lack of standardization of
methodologies; COMET appeared to provide a clearer framework to pursue standardization. Overall,
participants commended the presence of federal agencies at the meeting. In particular, multiple
participants noted that the presence of AHRQ and PCORI representatives was helpful to learn about
practical steps for funding of COS-related development.
When asked if they were able to explore opportunities for collaboration with COS developers and other
stakeholders, however, participants responded with a mix of “Strongly Agree,” “Agree,” and “Neutral.”
Participants were asked to describe ways that they as individuals and organizations may be able to
contribute to COMET’s work. Some participants conveyed uncertainty, given limited experience and a
perceived lack of success. One participant even described his or her own experience as a “cautionary
tale for others.” Other participants responded that they could contribute through partnerships, i.e. with
organizations such as CMTP, and methods of stakeholder engagement, such as engaging with groups
early in the process to help define outcome measures.
When asked to describe other individuals and organizations who may also be interested in this work,
some participants responded that they were unsure. One participant suggested contacting professional
societies for groups that are developing measurement sets across a range of diseases, i.e. groups that
are looking not only at clinical trials, but comparative effectiveness research (CER) and practice settings
Center for Medical Technology Policy
Core Outcomes Sets in Effectiveness Trials: A Multi-Stakeholder Training and Development Workshop
Project Lead: Sean Tunis, MD, MSc
as well. This participant recommended contacting groups such as the National Quality Foundation.
Another participant commented that research committees of various societies may be interested in
being engaged in developing and defining COS; e.g. in gynecology, organizations closely aligned with the
Society of Gynecological Surgeons, such as the American Urogynecologic Association and the American
Association of Gynecologic Laparoscopists.
Recommendations
One participant recommended that the meeting could have used even more “how-to” insights and
discussion of hurdles overcome by those who have been successful in COS development and
dissemination. Another participant noted that some of the groups did not seem to have a clear grasp on
how to move forward. Participants recommended greater focus on follow up to avoid loss of
momentum gained from the meeting.
Themes
Overall, responses to this follow up survey indicate that this meeting provided a valuable opportunity
for developers and agencies to network and share knowledge. Themes in these responses include that
the meeting, as the first network opportunity of its sort in North America, was valuable in sharing
challenges and brainstorming ways to collaborate. Networking with developers of other disciplines and
with individuals representing federal funding agencies was particularly helpful. However, not all
participants left with clarity regarding best practices for development or stakeholder engagement, or
actionable ways to collaborate.