Work with Research Advocates

Patient engagement allows people with Parkinson’s and care partners to be equal players in their health care and in research.

Traditionally, people with Parkinson’s and care partners participated in research as “subjects.” While they took part in clinical trials, they were not involved in the process of developing research. Through patient engagement, these groups co-design trials alongside scientists.

Patient engagement in research helps new therapies that matter the most to people with PD get to the market more quickly.

Ensures that research is focused on what is most important to people with Parkinson’s and their care partners.

• Example: Researchers may assume that symptoms like tremors are most important to people with PD. However, people with PD may note that symptoms like gastrointestinal problems have a greater effect on their quality of life.

Reduces barriers to research by eliminating unnecessary burdens placed on participants.

• Example: A study might require that people with Parkinson’s make frequent visits to the clinic and take part in multiple tests. People with Parkinson’s can help find solutions to reduce the number of in person study visits and number of tests, making it easier to participate.

The Foundation has cultivated a group of people with Parkinson’s and care partners who can effectively work with researchers. We have trained more than 300 Research Advocates across 42 states.

• Most have participated in a clinical trial.
• Represent a wide range of the Parkinson’s population in terms of year of diagnosis, demographics, race and ethnicity
• Are trained by the Parkinson’s Foundation in how research works and how to work with research teams.
• Share their expertise based on their lived experience with PD.
• Provide a community perspective to offset the more technical aspects of research.

The Foundation’s patient engagement staff have expertise, resources and support to successfully pursue patient engagement in research.

We work with Research Advocates work alongside with research teams at each step of the research process to co-develop trials through:

• Patient Journey Mapping: Creating an overview of the lived experience with PD.
• Prioritizing therapies based on what is most important to people with PD.
• Defining Study Endpoints:
  • Delineating what changes have the most meaning for a person with PD’s quality of life. (Example: If a new medication leads to 20 minutes more “on” time, is that amount of time meaningful to a person with PD or is more “on” time needed?)
  • Selecting the most important endpoints to reduce study burden. (Example: If reducing pain is more important to people with PD than reducing fatigue, tests on fatigue can be removed, making it easier to take part in the trial.)
• Choosing and developing new Patient Reported Outcomes (PRO) Tools. (Example: A survey that people with PD co-design and fill out once a week to tell researchers how they are doing as a means to track their quality of life.)
• Developing study protocols with set numbers of study visits and types of tests to reduce study burden, providing insights into the informed consent process.
• Preparing summaries of study results in lay language to increase dissemination