Engaging Burn Survivors, Their Families, and the Burn Community in Patient-Centered Outcomes Research: A Burn Survivor- and Burn Community Stakeholder-Generated and Prioritized Research Agenda

Abstract

INTRODUCTION

Burn injuries directly impact nearly a half-million people in the US every year.¹ Burn injuries can be life-altering, and survivors of severe burns frequently have long initial lengths of stay and undergo multiple surgical operations during that time.² Their postacute care recovery includes extensive physical and occupational therapy and potentially additional surgical interventions to manage contractures or other scar complications.³ During their acute hospital stay and recovery, interdisciplinary burn teams emphasize to patients that they are partners in their care and that their active engagement is critical to their outcomes. Despite the acknowledged partnership with burn care teams in their direct care, burn survivors and their families have been absent from discussions regarding the direction of burn research, particularly research that focuses on their quality of life, mental health, and physical well-being after injury and the challenges of recovery.

The value of patients’ and other stakeholders’ participation in the research process is well recognized.^4,5 The patients’ lived experiences give them a unique viewpoint to identify gaps in existing patient-centered outcomes research. To have the greatest impact for burn survivors, future burn research, particularly as it relates to improving quality of life, accessing resources, and addressing challenges related to return to work and community reintegration, should be driven by those experiencing the recovery firsthand, their families, and other stakeholders in the burn community.

Co-production in research is broadly defined as “the process of generating knowledge through partnerships between researchers and those who will use or benefit from the research.”⁶ Co-production has been operationalized largely outside of the United States in research for the education, treatment, or management of substance use,⁷ dementia,⁸ perinatal care,⁹ mental health care,^10,11 and early recovery after surgery.¹² Co-production is still a nascent practice in burn research, but based on existing literature, there are opportunities for both individual fulfillment and broader outcomes to impact the community through the practice of engaging burn survivors in research.

The aim of this work was to identify and prioritize research topics and barriers to research participation from the survivor’s perspective. This effort was directed by the first burn research collaborative governed by an interdisciplinary group of burn experts, the majority of whom are burn survivors and caregivers of burn survivors. We hypothesized that people with expertise in the lived experience of a burn survivor or caregiver would generate a list of research topics unique to them. In an effort to optimize both the success and equity of future research projects, we also asked what barriers prevent burn survivors and their caregivers from participating in burn research.

MATERIALS AND METHODS

In February of 2022, the Burn Survivor-Centered Outcomes Research Collaborative (BSCOR) was formed. This collaborative was formed to focus on creating successful co-production in burn research through forming equitable partnerships with burn survivors and other burn community stakeholders. BSCOR was established with a governance structure consisting of a large advisory committee and a smaller steering committee, both comprised of stakeholders as shown in Table 1. The original plan was that the steering committee would guide the development and implementation of the proposed project and facilitate meetings for the advisory committee and the research collaborative, while the advisory committee would provide input and opinions to shape BSCOR’s efforts. However, we quickly realized that the combined governance committees functioned very well together, and ultimately, this combined committee guided the development and implementation of the project. After establishing BSCOR, the collaborative put out an open call for collaboration with researchers.

To determine priorities for burn research from the stakeholders’ perspective, we collaborated with a team of specialists in community collaboration and engagement at the University of Utah called the Community Collaboration and Engagement Team (CCET) to hold Engagement Sessions. The BSCOR governance committee, as a small group of stakeholders, determined four broad topics for the Engagement Sessions through a series of meetings and discussions. In addition to these topics, a fifth topic, “Barriers to Participation in Burn Research and Solutions to Reduce Barriers,” was included during the planning and proposal of the project. These topics were then given to the engagement team who formulated a script for the moderators of each of the Engagement Session topics. The scripts were brought back to the governance committee for approval. After approval, flyers for recruitment for the Engagement Sessions were distributed through social media (both personal and public accounts), word of mouth, and email. After approval from the University of Utah IRB, the recruitment commenced. Adult burn survivors and their caregivers who speak English were included in the Engagement Sessions. We distributed flyers explaining the project with a call for participation. Those that answered the call were contacted, and individuals meeting the inclusion criteria that were able to attend the scheduled session consented to participation. Engagement Sessions were held virtually using Zoom (San Jose, California) between June 2022 and April 2023. Originally, we intended to hold 3 Engagement Sessions for each of the 5 topics, but we adjusted as the project evolved and ultimately held 16 in total, including a session exclusively for Firefighter Burn Survivors on the topic of Aftercare and an additional exclusive session on Recovery—Physical and Psychological for Electrical Injury Survivors. Notably, every committee member and Engagement Session participant was reimbursed for their involvement in the project. As experts, either in their fields or their lived experiences, everyone received the same rate of reimbursement.

After the Engagement Sessions were completed, the audio recordings were transcribed using GoTranscript (Edinburgh, Scotland). These transcripts were evaluated for broad or repetitive topics and questions by the BSCOR governance committee. We chose to perform the ranking with this smaller, engaged group of stakeholders to survey a novel group of stakeholders and to ensure a high rate of response to the ranking survey. Once the topics/questions were identified, the committee met and decided by consensus that initial ranking would be done with an online survey followed by a meeting to reach a consensus agreement on the results of the survey ranking. The committee chose to perform this ranking through a repetitive pair-rank survey using OpinionX (Dublin, Ireland). A pair-rank survey was chosen because the method is ideal for longer lists of topics that are being ranked; voting on one option at a time is more efficient than, for example, drag-and-drop ranking. To perform pair ranking, OpinionX uses “Win Rate Analysis,” which takes the number of wins, the number of times that option is chosen between the 2 given options, and divides it by its total number of comparisons, resulting in a score between 0 and 100.¹³ For ranking the research topics/questions, the question was asked: “Which of the following research questions or topics is more important to you as a burn survivor, caregiver, or member of the burn care and research community?” as several sequences of 2 different options were presented. For ranking barriers to research participation, the following question was asked with sequential pair-ranking options: “Which of the following barriers to research participation is more important or impactful for you?” The pair-ranking results were presented back to the committee to ensure agreement with the ranking through consensus-reaching discussion.

RESULTS

The BSCOR governance committee agreed upon the following topics for the Engagement Sessions: Patient and Family Education, Aftercare, Navigating the Healthcare System, Recovery—Physical and Psychosocial, and Barriers to Research Participation. CCET held a total of 16 Engagement Sessions, the breakdown of topics is shown in Figure 1. A total of 117 individuals participated in these Engagement Sessions. The self-reported characteristics of Engagement Session participants are in Table 2. Due to the virtual accessibility of the Engagement Sessions, participants were from across the United States with residents of 25 different states represented (Figure 2).

Figure 1.

Engagement Session Topics

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Figure 2.

Engagement Session Participant State of Residence

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From 16 Engagement Sessions, there was over 26 hr of audio that were subsequently transcribed. From the transcripts, the BSCOR governance committee identified a total of 37 research topics or questions. Several of these were consistent not only for all the Engagement Sessions with the same topic but across multiple topics. For example, “How to set appropriate expectations for recovery (long and short)” was mentioned in sessions on Patient and Family Education, Aftercare, Navigating the Healthcare System, and Recovery—Physical and Psychosocial and was highlighted in both the firefighter and electrical injury survivor sessions. In addition, 19 barriers to participation in research were also identified from the 3 Engagement Sessions of the same topic.

Following identification of these research topics/questions and barriers from the transcripts, anonymous repetitive rank-pair prioritization was performed by the BSCOR governance committee. We received a 100% response rate for the ranking survey. After presentation and discussion of the survey rankings, the final list of prioritized topics/questions for burn research was formed by consensus, Table 3. The top 3, in order, were: how to set appropriate expectations for recovery (long-, short-term); optimizing transitions of care from inpatient to outpatient; preparing patients for next steps; and how to reliably assess patient stage of recovery and match resources appropriate for that stage. Similarly, barriers to participation were ranked in the same manner. The top three barriers were: timing for researchers and survivors doesn’t line up (eg researchers want to study 2 weeks after injury but patients are not in a place to participate), lack of understanding of the expected outcome or benefit, and lack of resources to have bandwidth to participate. The complete list of prioritized barriers to research participation is found in Table 4.

DISCUSSION

We present the first stakeholder-generated and stakeholder-prioritized burn research agenda. Prioritization is important to allow for focus and triage of the concerns and questions that burn survivors and their caregivers have. However, every topic that is listed represents an important concern from participants in our engagement sessions. Also, while these topics are presented as discrete items, there are clear themes throughout, such as the need for better communication and expectation setting so that people are prepared for the next steps in the continuum of care. The long-term challenges of living with a burn injury as a chronic disease are also predominant, with concerns about scarring, itching, fatigue, brain fog, and temperature intolerances. Perhaps unsurprisingly, the difficulty with navigating the health insurance system is prevalent, which highlights an area where our national organizations can partner with burn survivors for political advocacy and consumer protections.

The list of barriers to research participation that burn survivors and their stakeholders generated reveals a list of mostly surmountable barriers that should be considered in the design and implementation of future burn research studies. Several have relatively simple solutions such as appropriate compensation for time, creating virtual options to include broad geographical representation, offering opportunities for non-English speaking participants, and planning for overcoming technology limitations. However, several highlight a need for improved relationships between researchers and their participants such as the mentioned lack of trust, fear of safety, and belief that research is not patient centered. These may require novel approaches to establish, or in some cases reestablish, the trusting relationships on which successful research is based. Lastly, some of these barriers require creative solutions that are novel for the burn community. For example, after hearing concerns regarding the sixth-ranked barrier to research participation, “participants never see the outcome of research,” we decided to hold a virtual Return of Results session. While CCET is familiar and facile with this type of session, it was novel for our research team. For our Return of Results session, everyone who participated in an Engagement Session was invited back, and we presented the final prioritized results to them and outlined BSCOR’s next steps. We received universally positive feedback on the session, and having knowledge of this barrier and success with overcoming it, we have been able to plan for such a session in the design of subsequent studies. We would suggest that other researchers adopt a similar strategy in the future as a direct response to overcoming this barrier.

Any type of stakeholder engagement is naturally limited by the stakeholders that participate, so while we are presenting a prioritized agenda here, it may not be the same for another group of stakeholders. Notably, the participants in our Engagement Sessions were more evenly split between genders than the United States burn patient population, likely owing to the inclusion of caregivers. We also had race demographics that were different from the national burn patient demographics, and while race is a social construct, burn care and recovery are greatly impacted by society, so the influence of race on the experiences of our stakeholders cannot be overlooked. We also were unable to include non-English speakers in this project due to the limitations on the number of Engagement Sessions. As burn injuries are a worldwide problem, the lack of input from non-English speakers is a notable absence in the results. Lastly, our Engagement Session participants were also more educated and reported higher yearly income compared to the average American, potentially signaling some level of privilege in their ability to participate in research which may also translate to their ability to manage a life-changing injury. This also, despite our efforts to reach potential participants through many different avenues, may indicate a bias in who the call for participants reached.

CONCLUSION

Burn survivors and their caregivers are experts in their lived experiences. By involving them in burn research as collaborators and contributors from the very first steps of research and throughout the continuum of planning, implementing, and disseminating findings, we believe that burn research will be both more successful and more impactful. We have taken the first steps to form the first co-produced burn research collaborative and the first stakeholder-generated research agenda for the burn community. The research topics identified through our stakeholder engagement highlight the need for better expectation setting, communication, and preparation for transitions of care. Additionally, the negative impact of the challenges of navigating the health insurance system was repeatedly mentioned and indicates an opportunity for advocacy from our national organizations. We encourage researchers to translate these topics into feasible research projects. We anticipate that these efforts will yield important information to improve healthcare delivery and patient- and survivor-reported outcomes.

Conflicts of Interest: The authors report no actual or potential conflicts of interest related to the submitted work.

ACKNOWLEDGEMENTS

The authors would like to express our deep gratitude to every burn survivor and caregiver who shared their thoughts and feelings in these Engagement Sessions. Your openness and vulnerability have made this work possible.

We would also like to acknowledge the following members of the Burn Survivor-Centered Outcomes Research Collaborative Governance Committee who declined authorship on this manuscript but whose contributions were critical to the success of this work: Megan Bergfeld, Mark Haley, Erin Johnson, Fatu Matagi, and Dan Steffensen.

Funding:

This research was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EACB-22508). The views, statements, and opinions presented in this work are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its’ Board of Governors, or Methodology Committee.

REFERENCES