Update on Pipeline-to-Proposal grant (P2P) from the Patient Centered Outcomes Research Institute (PCORI). We need your help…
In early 2016, your National Fibromyalgia & Chronic Pain Association (NFCPA) wrote a proposal for a Pipeline-to-Proposal grant (P2P) from the Patient Centered Outcomes Research Institute (PCORI). The P2P grants encourage patient groups to create research communities from the ground up that will research what patients want studied. We were awarded the first grant in August 2016 and began creating a Pain Patient-Centered Research Community (PPCRC). The PPCRC has been meeting on a regular basis to organize our project and develop research ideas. NFCPA was recently awarded an additional grant to continue development of the PPCRC.
The purpose of the PPCRC project is to identify interventions that improve the level of function and quality of life of chronic pain patients and improve the quality of pain care from a patient/caregiver research community. We are working closely with our patient-partners to develop the "Patient-built, Patient-directed, Patient-centered Research Community for Chronic Pain." At the same time we are working closely with existing partners on the development of a new Community Partnership, which aims to give patients unique opportunities to become involved in the research process with other existing partners.
Our mission is to improve participation in society and quality of life for people who live with chronic pain through collaborative, patient-centered, comparative effectiveness, research into the treatment, care, and management of chronic pain, with a focus on patients’ perceptions of how pain care can be improved and what patients report works for them.
NFCPA project values:
Decisions and actions will be based on the following values. We believe:
- Pain is real
- Chronic pain interferes with participation and quality of life
- Chronic pain patients need access to treatment for their pain
- Treatment of chronic pain requires a team approach with mutual respect between patient and provider
- There are many different types of health care providers who treat pain with a variety of interventions
- Patients often know what works for them
- Integrative or Complementary and alternative medicine play a role in managing chronic pain
HOW CAN YOU HELP WITH PPCRC?
When we started this project, we assumed we would study “what works for pain patients” and compare two or three different interventions. However, our work to date has shown that we, as patients, also want to improve the quality of pain care and how pain care is delivered. For example, how do primary care providers learn about new pain treatments? How can health care providers be more patient-centered? How can health care providers create a team with patients?
With this addition to our areas of potential research, we need to add representatives of health insurance carriers and health services researchers to the team. If have any contacts with people who work for insurance companies with patient relations or research, or if you know any health services researchers, please contact us. You can reach the project coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it. Thank you!
HOW CAN YOU HELP IN YOUR LOCAL COMMUNITY?
NFCPA is serious about supporting research. Live and virtualTogether Walks in 2016 and 2017 across America raised more than $10,000 for pilot studies. Please join us in 2017 for this important cause. Please visit togetherwalks.org for more information.