Monitor and sustain: outcomes and findings
During the first year, the panel reviewed nine different studies and projects from eight unique researchers and institutions (see table 1 and online supplemental item 3). The average number of panelists attending the quarterly sessions was 10.6 (minimum=7; maximum=13). The average presentation length for researchers was 11.6 min, and the average discussion time for the panel was 14.2 min. Thus, the average time spent on a study presentation and discussion was 25.8 min.
Studies and projects reviewed by the Injury Research Engagement Project (I-REP) panel during year 1 (abridged)
Panelist attendance varied during the first five meetings in year 1, with a stable group of five panelists attending all five meetings. Two panelists attended four of the meetings, 2 other panelists attended three meetings, and 12 panelists attended two or fewer meetings during the first year. A total of 21 active panelists were recorded for year 1.
Panelist expertise
With an array of geographic regions (figure 2), and a broad range of injury and recovery experiences represented among the panel, each research project presented in the first year triggered a robust discussion. Several survivors and family members had direct experience with the medical challenges presented, including blood clots and blood thinners, gun violence, pediatric trauma, extensive use of antibiotics for a range of infections, hip fractures, and geriatric trauma. In each instance, multiple trauma survivors and family members had direct experience with the topic areas. Many had suffered the condition or cared for family members managing the condition of concern. All had relevant advice regarding the sensitive and timely engagement of survivor participants and identified numerous areas of specific concern to survivors based on their own experiences, their family experiences, and the experiences of survivors they had met with since their hospitalization.
Geographic distribution of Injury Research Engagement Project panelists, presenters, and staff in 2024.
Having navigated each of these conditions, treatments, and/or their many complications, panelists comfortably reflected on the researchers’ questions and concerns, offering an expert perspective on such questions as, “how important is this research to trauma patient quality of life,” and “when and how should we try to engage the survivor?” Such reflections, based on lived experience, included:
[I’m] a trauma survivor, but then a stroke [survivor]… so preventing blood clots is incredibly important. My wife had a hip replacement last year, and I spent the weeks doing the [Lovenox] shots.
Something that comes up a lot in the brain injury world is … when is the right time to reach the survivor? …I probably got a million pamphlets between the hospital and the rehab [at a time of] being overwhelmed and not knowing you know which way was up.
Over the years … [as a trauma survivor and] dealing with my older family members, the topic of antibiotics came up [a lot]. The approach that every doctor had towards it from various hospitals [varied] every time. …[having] a systemic … approach across the medical field – I can see benefits from that.
I can say my experience… working in East Harlem, one of the most violent community… the people who suffer this [trauma can] speak more than anyone and tell you [their] story… I think that gonna help you to get funding because this is a need in the community.
Research focused on broader concerns, such as “how important is it to train surgeons to communicate well with patients?” generated significant discussion as panelists were able to reflect on years of experience under a trauma surgeon’s care. One survivor of a violent crime noted,
I think [communication training] is extremely, extremely critical… I was in total shock, my family was in shock. Nobody really knew how to make decisions, and it wasn’t very clear what the options were…
This sentiment was echoed by many, including an older adult survivor of a bicycle crash:
I have a firsthand knowledge of not only being a trauma patient but working with some of these surgeons … it’s very hard for me to draw out from them what they’re really trying to tell me.
The panel was frequently asked to reflect on particular research methods, such as randomization, methods to increase participation, encouraging long-term follow-up, and exception from informed consent (EFIC). The survivor perspective on EFIC included reflection on patients’ struggle to feel included in their care as well as survivors’ strong desire to use their experience to improve that of future patients:
Honestly, I would feel bothered [to discover I had been enrolled in a research study] as a survivor. I wasn’t informed about a lot during my own trauma. But I understand the logic as a researcher.
Giving back is powerful for survivors. Mentioning that participation could help others makes a big difference.
When asked, “Would you be comfortable using a chatbot to explain EFIC studies,” family member and trauma survivor panelists could visualize the situation and offered a range of perspectives from the very positive,
…as a tool or a resource for someone who doesn’t know what questions to ask… to make the resources [more accessible] … to communicate with medical staff would be really, really helpful.
to the more wary:
I worry [that] during a very vulnerable time using a chat bot, maybe kind of desensitizing because of the lack of face-to-face communication.
Researcher responses
Researchers presenting their work to the I-REP panel sought trauma survivor expertise, perspective, and guidance regarding the development, implementation, and dissemination of their work. Presenters with specific directed questions received targeted feedback and suggestions that, in many cases, researchers had not previously considered. For instance, when offering suggestions for sharing complex clinical details with patients and families being consented to continue participation in an EFIC study, the researcher reflected,
The light bulb that just went off over my head right now when you just said that! [We] spend so much time and energy trying to explain studies … and giving our researchers some materials that have some charts and graphs that we could show the patients and their families when we’re getting consent … [this is something] we don’t normally do. … That’s the best thing I’ve heard all day!
Other presentations stimulated more free-flowing conversations that helped the presenting researcher better understand the importance of their research and common concerns of their target patient population. During one such discussion a researcher offered a new technology to track pain and recovery progress (an idea not previously proposed), prompting a longer discussion on the importance of long-term functionality and healing vs. hospital length of stay. The researcher reflected that what is important to doctors is not always the most important thing to patients, and what matters most to each survivor varies necessitating direct discussion with each individual research participant:
This is why I think these panels are so important … we could sit here and debate as clinicians but ultimately, we’re trying to do this to help patients.
Researchers expressed appreciation for the opportunity to discuss their projects with trauma survivors invested in supporting the development of research that is relevant, impactful, and respectfully implemented. Many shared sentiments such as these:
Thank you so much it was a pleasure and very interesting to get candid real time feedback.
This would change a lot of research planning if this voice was included and heard all the time.
This is very helpful. And just exactly what we’re looking for.
Panelist experience
Fifty-seven percent of the active panelists completed the engagement survey (n = 12) ahead of the October 2024 reflection session. The majority of respondents (58%) indicated that they had a moderate level of understanding of meaningful patient engagement and the role of patient partners in research, while 42% indicated that they had a high level. Seventy-five percent of respondents agreed or somewhat agreed that they felt successful in their panelist role, and the same percentage (75%) agreed or somewhat agreed that panel participation had met their expectations. Additionally, many panelists (67%) indicated that panel participation had benefitted them personally, and half (50%) indicated that participation benefited them professionally. When asked to rate on a scale of 1-10, ‘Do you feel your voice and input are valued by the team?’ the average response was 8.6 (SD=1.75). When asked, ‘How much do you trust the other panelists?’ the average response was also 8.6 (SD = 1.5). 92% of respondents believed the panelist compensation was about right, and the session time of day was satisfactory.
During the guided end-of-year focus group, panelists offered insight into the motivations and experiences of their participation. Themes emerging through analysis fell into four broad categories: (1) motivation to join and continue on the panel, (2) benefits of participation, (3) best practices and (4) facilitators of engagement.
Motivations to join and continue
Panelists chose to join for a variety of reasons, such as the chance to give back to the community, to use their expertise to make a difference for future trauma survivors, to develop new skills, and to build on existing experience and passions.
This is how I tell my story… and this is just how I give back. I do feel that obligation because I don’t want anyone to fall through any cracks that I did. So I got that personal experience, and I’m trying to help fill those gaps. And this is how I do that.
Panelists thought they were motivated to stay as a result of the positive experience of participation. Panelists thought they were validated, fulfilled, and encouraged to know that their most difficult experiences could be used to improve trauma care.
It validates. You know. The experience that we’ve been through. Something can be learned from our experience, you know, both good and bad.
I keep coming back just for … nothing but positive reasons, because you all lift me up, and I want to be a part of assisting the next person.
Participation made them think a part of the healthcare community from a healer, rather than patient perspective, and offered a sense of purpose.
This will bring change. But also I feel like I’m not alone, and I’m a part of a community.
Several panelists appreciated the opportunity to “share their story” and “feel heard,” even though the meetings did not focus on reviewing individuals’ trauma story.
I know what it’s like not to be heard, and not to be understood, and to feel like no one cares.
Participants shared feelings of empowerment, recognizing that their experiences and perspectives added value to the research community.
This has been really great and kind of healing to meet with people who actually are wanting to do the right things and wanting to make that experience less traumatic for people.
The panelists strongly believed that their contributions “bridged the gap between the ordinary population and the scientist,” helping trauma patients better understand the science, design, and implications of research, and their own role in furthering that science.
Best practices
Panelists cited the supportive environment of the panel as an important feature leading to the many benefits experienced. Panelists thought the format created a positive environment that put them at ease. They appreciated CNTR’s responsive communication outside of meetings, and valued the concise and digestible presentations, materials provided ahead of time (when available), and how CNTR guided the researchers to present their material. To improve their experience, panelists recommended adding more opportunities for member introductions and socializing to further build community, reducing the number of studies reviewed (from three to two) allowing for a more thorough discussion period, and standardizing the “onboarding” process for new panelists. The onboarding process (called an “Introductory Call”) for new panelists now includes a Zoom call to acquaint the incoming panelist with the I-REP panel, gather general information about the panelist, and answer any questions that they may have.
