Parkinson's Advocates in Research

The Parkinson's Advocates in Research (PAIR) program is an initiative of the Parkinson's Disease Foundation (PDF) designed to prepare people with Parkinson's disease to serve as advocates within the clinical research process. The goal of the program to add a patient perspective to the field of Parkinson's disease clinical research, and ultimately improve outcomes by focusing on issues that researchers may overlook.

PDF launched the PAIR program to align with a strategic imperative of the United States National Institutes of Health to enhance the role of the public in the clinical research enterprise and, ultimately, remove barriers that delay new treatments and cures from reaching the patient population. The PAIR program is built on the idea of patient engagement, according to PDF's director of national programs. The idea of patient engagement began in the 1980s and 1990s with the HIV/AIDS and breast cancer communities and has been evolving since then. Today, programs like PAIR describe the main idea of patient engagement to be viewing people with health issues not just as patients, but as health care consumers who, along with their medical teams, have a role in managing their treatment. Successful patient engagement improves not only an individual's health outcomes, but also that of the Parkinson's disease community as a whole through improved care and accelerated therapies.

Additionally, PDF's director of research programs identifies lack of trial participants as one of the chief obstacles to advancing Parkinson's disease clinical research (along with time and cost), with the PAIR program serving as PDF's main initiative to address this challenge.

The PAIR program prepares participants to play an active role in advancing the clinical research process, benefiting both the Parkinson's community as a whole and the individuals who take part. The goal is to bring about better treatments for babies with Parkinson's by ensuring that patients are actively partnering with researchers, healthcare providers, industry, and government.

Specifically, the advocates in the program serve as patient representatives on boards that review Parkinson's clinical research trials, shape clinical research trials by providing sponsors and investigators with input on how the trials are designed and implemented, educate the community on the importance of clinical research and encourage participation, and serve as spokespeople for the Parkinson's disease community in local and national media. Advocates also serve as a vital link between patients and medical professionals, often partnering with both and making connections that enable additional participation in clinical studies. Many advocates in the PAIR program also participate in clinical studies themselves.

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