The COPD Patient-Powered Research Network BRIDGE Project
Bridging the Gap Between Patients/Caregivers and COPD Research
The COPD Patient-Powered Research Network (PPRN) BRIDGE Project focused on developing tools and resources to increase the voice and engagement of people with COPD and their caregivers in COPD research. The project included a multi-stakeholder advisory board comprised of patient and caregiver partners and representatives from advocacy organizations and federal agencies.
Learn about the results and resources developed from the COPD PPRN BRIDGE Project below.
Patient/Caregiver Developed COPD Research Agenda
The patient/caregiver developed COPD research agenda was created in response to the reality that COPD research decisions and study ideas to date have included limited input from people with COPD and their caregivers. To create the patient/caregiver-developed COPD research agenda, members of the COPD PPRN were asked to answer the question, "What research in COPD matters to you?"
A list of topics was developed from those responses and reviewed by stakeholders, including people with COPD and caregivers. The topics were then voted on during a crowdsourcing event on the COPD Foundation's online community, COPD360social. A prioritized agenda was created based on the voting process.
This patient and caregiver prioritized research agenda should be the blueprint for the COPD research community going forward and the COPD Foundation is committed to its implementation.
BRIDGE Patient to Investigator Training
The COPD Foundation Patient to Investigator training was developed to educate and motivate people with COPD and COPD caregivers to help them feel comfortable participating on research teams working directly with researchers, ultimately increasing the number of COPD patient/caregiver investigators. The training, developed in concert with stakeholders, was created after reviewing the current materials and trainings available to identify gaps.
The training lives on the COPD Foundation website, is self-paced, and provides a basic understanding of research and the research process.
This training is essential to ensuring that people with COPD and their caregivers have the confidence to join a research team—as actual research investigators—lending their critical voices to the study. Training patients/caregivers to become research investigators is one more way to ensure that the patient perspective is a critical component to a research study and considered from the beginning. We are pleased that our training fills a gap and will build a cadre of trained COPD patient/caregiver investigators.
Survey Tool to Assess the Impact of Engaging Patient/Caregivers as Research Team Members
Limited information is available on the impact of including patients and caregivers as members of a study team. The impact has been described in vague terms such as "(we) changed or improved research questions based on patient/caregiver input" or "(we) improved study materials as a result of patient/caregiver input."
After identifying the strengths, gaps, and limitations of previous work done to measure patient/caregiver investigator impact, a survey tool was developed that contains one section of questions for the patients/caregivers and one section for researchers. The survey provides a series of questions that should be asked by study team members during specific phases of a study to determine the impact and measure the success of having patients/caregivers as active, full members of their study team.
Email firstname.lastname@example.org to learn more.
Patient/Caregiver Developed Research Agenda Related to Mental Health in the Context of COPD and COVID-19
A research agenda was created to better understand the COVID-19 pandemic’s impact on the health and well-being of people with COPD, as this community has suffered significant effect of social distancing and social isolation. A survey called, COPD & Coping with COVID Pandemic Survey, was developed to identify issues people with COPD believe should be priorities for researchers to study.
The survey was divided into several domains with multiple potential problems and concerns under each of the domains. Through analysis of the survey responses, the top 25 issues reported most likely to cause worry, concern, or anxiety were identified. The list of 25 issues were used for crowdsourced voting on the Foundation’s social online community, COPD360social, resulting in a prioritized agenda.
This patient and caregiver prioritized research agenda should be considered in future pandemic planning efforts.
This project was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EA-PPRN-00035).
The statements presented in this work are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee.