With over 5 million Americans living with traumatic brain injury (TBI)-related disability, TBI represents a major public health issue. TBI is now recognized as a chronic condition, with life-long health implications. Individuals with TBI have more health issues than the general population and greater need for effective health promotion to prevent secondary conditions. However, most TBI-related research is focused on identifying new knowledge regarding basic science. Insufficient time and resources have been allocated to exploring strategies aimed at assisting TBI survivors and their caregivers to negotiate long-term recovery. Improving patient outcomes and supporting long-term recovery demands the collaboration of scientists, clinicians, and those living with and caring for those with TBI.
The proposed project will advance patient-centered outcomes for adults living with moderate to severe TBI through building a national coalition of patient and stakeholder partners. We will work with the Coalition for Recovery and Innovation in Traumatic Brain Injury Care Across the Lifespan (CRITICAL) to develop resources for empowering individuals with cognitive impairments to collaborate on research. Second, the CRITICAL will lead the formation of a new patient-centered research agenda. The project location will be the University of Colorado Denver, Anschutz Medical Campus, Aurora, CO.
The project objectives are:
- to establish the CRITICAL and develop their capacity to collaborate on clinical effectiveness research;
- develop strategies and resources for engaging individuals with cognitive impairments in research; and
- develop a national research agenda for improving the lives of those living with moderate to severe TBI.
Project activities will include:
- three in-person coalition meetings;
- qualitative interviews;
- trainings for all partners;
- an online survey;
- systematic review of research gaps;
- web-site development; and
- dissemination of project results via website, social media, presentations, and manuscripts.
The outcomes of this effort will be:
- A patient and stakeholder advisory committee to steer patient-centered TBI outcomes research
- Resources and strategies for engaging those with moderate to severe TBI and associated cognitive impairments in Community Based Participatory Research
- A research agenda for multi-systems clinical effectiveness research for improving TBI outcomes across the lifespan
Our patient engagement plan is founded on a commitment to:
- equal partnership,
- shared decision-making,
- mutual learning, and
- trust among all patient and stakeholder partners.
The purpose of this proposal is to advance the interests and needs of patients in the formation of a new research agenda and pursuit of funding for a comparative effectiveness research project. The CRITICAL will also identify methods for empowering individuals with moderate to severe TBI and cognitive impairment to collaborate as equal partners in research.
- Valuing patient and caregiver perspectives
- Recommendations for the research agenda will be based on the input of patients and caregivers
- Shared responsibility
- We will work together to develop the Coalition’s products
- Mutual respect and equality
- Every partner is treated with respect and as an equal
- Learning from each other
- Every partner has valuable knowledge to contribute