Patient/Caregiver Developed COPD Research Agenda

The first ever patient/caregiver prioritized COPD research agenda was created through the COPD Patient-Powered Research Network BRIDGE Project - Bridging the Gap Between Patients/Caregivers and COPD Research.

The COPD Foundation is committed to implementing this agenda and calls on the research community and funders to prioritize these topics outlined by our community.


The COPD Patient-Powered Research Network BRIDGE Project


Patient/Caregiver Developed COPD Research Agenda:

 

Stem: Medical research about benefitting individuals with COPD by:

  • Reversing COPD through new discoveries that treat the lung (other than stem-cell or transplant)
  • Improving the drugs that relieve shortness of breath or treat flares-ups
  • Curing COPD, for example, with stem cells or lung regeneration
  • Reducing symptoms like cough, pain, and shortness of breath
  • Improving insurance and drug coverage to support access to drugs and medical devices
  • Improving medical equipment such as oxygen delivery systems or CPAP machines and access to these therapies
  • Improving physical functioning and maintaining mobility or independence
  • Improving access to pulmonary rehabilitation for guided exercise plans
  • Reducing fear, stress, anxiety, or the psychological impact of COPD
  • Treating COPD along with managing other diseases patients may have, such as hypertension, heart disease, diabetes, asthma, or sleep apnea
  • Replacing the diseased lung through improved or easier lung transplant
  • Personalizing treatments with genetic or specific information about individual patients
  • Understanding how to improve the care of patients in the home, including how to support COPD patients without a caregiver or someone to help them
  • Using diet, vitamins, or nutrition to reduce the effects of COPD
  • Using holistic therapies like yoga, complementary, alternative, or other non-traditional approaches to treat or reduce the effects of COPD
  • Understanding genetic markers or other factors that can prevent COPD or lead to earlier diagnosis
  • Improving adherence to therapies and medical equipment use such as oxygen delivery systems or CPAP machines
  • Developing effective approaches to improve patient-provider communication
  • Including persons with COPD in more severe stages or other under-represented groups like minorities to improve their care
  • Understanding how governmental regulation or health policy impacts the lives of those with COPD
  • Developing effective education interventions to support patients and their care partners in dealing with COPD
  • Understanding how jobs, environment, and pollution cause or affect COPD
  • Understanding how best to prevent people from smoking or help them to stop smoking
  • Understanding how to improve support of families and friends of patients with COPD

Patient/Caregiver Developed Research Agenda Related to Mental Health in the Context of COPD and COVID-19:

 

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@reg;), its Board of Governors, or Methodology Committee.