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:

1. to establish the CRITICAL and develop their capacity to collaborate on clinical effectiveness research;
2. develop strategies and resources for engaging individuals with cognitive impairments in research; and
3. 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:

1. A patient and stakeholder advisory committee to steer patient-centered TBI outcomes research
2. Resources and strategies for engaging those with moderate to severe TBI and associated cognitive impairments in Community Based Participatory Research
3. 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.

Values

• 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

 

Definition:

Patient-centered Outcomes Research (PCOR)

Helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options.

PCOR answers patient-centered questions, such as:

“Given my personal characteristics, conditions, and preferences, what should I expect will happen to me?”

“What are my options, and what are the potential benefits and harms of those options?”

“What can I do to improve the outcomes that are most important to me?”

“How can clinicians and the care delivery systems they work in help me make the best decisions about my health and health care?”

Reference: PCORI (Patient-Centered Outcomes Research Institute) Methodology Committee. 2013. “The PCORI Methodology Report.” pcori.org/research-we-support/research-methodology-standards

Patient Partner Training

The following training slides are for patient partners. The training support participation on the CRITICAL through providing background information. The training includes four brief sections that cover: an introduction to the CRITICAL; the role of advisory committees in patient-centered research; orientation to research and patient-centered outcomes methods; and a description of the process CRITICAL will follow to develop a patient-centered research agenda. In addition, there are four handouts that provide extra information related to the training.

Patient Partner Training Modules

Module 1: Introduction to CRITICAL

Module 2: Orientation to the Role of an Advisory Coalition

Module 3: Orientation to Research

Module 4: Developing a Research Agenda

Module 5: Formulating Research Questions

An Introduction to CRITICAL

Download the Introduction to CRITICAL (PDF)

 

Supporting documents:

CRITICAL Membership Agreement/Memorandum of Understanding

 

Resources

The PCORI Methodology Report

Toolkit on Patient Partner Engagement in Research

Patient Partner Interview Guide

PCORI Prioritizing Dissemination & Implementation

PCORI prioritizes the dissemination and implementation of its funded comparative clinical effectiveness research (CER) to ensure that new evidence makes it into the hands of people who can use it to make informed decisions about their health. We encourage any of our stakeholder partners to browse the PCORI website link below to find out more about the ways PCORI-funded CER results are being shared with the public:

Putting Evidence to Work

Additionally, we recommend the following information for CRITICAL healthcare professionals. These cover topics most directly relevant to the work of CRITICAL:

PCORI Methodology Standards: 17 Areas for Patient-Centered Comparative Clinical Effectiveness Research and Specific Study Designs and Methods

PCORI Methodology Standards: Standards Categories 1 & 2 — Formulating Research Questions and Patient Centeredness

MOU

CRITICAL Membership Agreement/Memorandum of Understanding

 

Publications

Engaging Those Living With Moderate to Severe TBI and Their Caregivers in Research

This website was funded through a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3908-UCD).

The views, statements, and opinions presented in this website 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.

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

http://www.pcori.org/