People with fibromyalgia and chronic pain can play an important role as advocates for better diagnosis, treatment, outcomes, and quality of life by getting involved in the Patient-Centered Outcomes Research Institute (PCORI). Created by the Patient Protection and Affordable Care Act, PCORI was established to insure patients’ and caregivers’ voices are included in developing and carrying out research. PCORI’s mission states that it “helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community.”
Patient centered outcomes research “helps people and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options.” According to PCORI, this kind of research answers questions like, “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?” and “What can I do to improve the outcomes that are most important to me?”
When applied to fibromyalgia and chronic pain, this means ‘patients’ with fibromyalgia and chronic pain and their caregivers have an opportunity to set research agendas that address their needs and the things that are important to them. In the patient role, that means letting researchers know what is important to people with fibromyalgia and chronic pain: What is the patient’s experience, and what do people with fibromyalgia and chronic pain want and need?
“Patient” with fibromyalgia and chronic pain can get involved in PCORI in several ways. PCORI holds public meetings on different health or research related topics, called workshops and roundtables, that anyone can attend via webinar or teleconference. These are good opportunities to learn and contribute to the discussion. Opportunities for public comments are available at most of these meetings. Keep in mind that PCORI wants to hear the patient’s voice and experience so the comments can be simple expressions of how you feel or what you think.
PCORI also encourages people to suggest topics that it should study and fund for research. For example, did you ever wonder what you can do to improve your sleep as a person who experiences chronic pain? You can go on PCORI’s website under “Get Involved” and suggest that PCORI study which factors can improve the sleep of people with chronic pain. And you can ask 10 of your friends, who can ask 10 of their friends to suggest it, also.
Another important function for patients is to become a reviewer – someone who reads research proposals and helps decide which one PCORI should fund. While it may seem a bit overwhelming, PCORI provides a lot of training and support for patients to fill this role. Plus, researchers who submit these proposals must include patients in their research, so as a patient, you are evaluating how the patient’s voice counts in the research. In other words, you are advocating for people like you. If you would like to be a reviewer, you can sign up athttp://www.pcori.org/get-involved/reviewers/prospective-reviewers.
You can learn more about PCORI by watching the video PCORI 101 online athttp://www.pcori.org/assets/articulate_uploads/PCORI_1018/story.html You can sign up for PCROI’s email list at http://www.pcori.org/home/signup so you can stay on top of what PCROI is doing and how you can get involved to advocate for people with fibromyalgia and chronic pain by expressing the patient’s voice.