Patient Engagement

Are you a researcher or study sponsor working in the field of Parkinson's disease (PD)? Working with Parkinson’s Foundation trained Research Advocates and expert patient engagement team can benefit your research study and provide you with insider knowledge.

The Parkinson’s Foundation has over two decades of work in patient engagement that has impacted the lives of people affected by Parkinson’s through prioritizing research, influencing stakeholders and improving studies.

Our successes include:

  • Ensured more money is directed towards research that matters to people with PD.
  • Built sustainable corporate frameworks for patient engagement.
  • Sped clinical trials funded by the National Institute of Health and the pharmaceutical industry by improving study protocol.
  • Placed Research Advocates on key working groups such as the FDA Patient Engagement Collaborative.

The Problem - Research is Too Slow

Almost 80% of clinical trials fail to meet their timelines to recruit all of the people needed to participate in the trial. These delays are costly, with new therapies getting to people with Parkinson’s disease (PD) slowly, or not at all.

The Solution – Patient Engagement in Research

What is patient engagement?

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.

Why is patient engagement important?

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.

Parkinson’s Foundation - A leader in Patient Engagement

How does the Parkinson’s Foundation offer solutions through patient engagement?

The Foundation has cultivated a group of people with Parkinson’s and care partners who can effectively work with researchers.

Since 2008, we have trained 300 “Research Advocates” across 42 states who meet the following criteria:

  • 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.

What are some specific types of work the Parkinson’s Foundation does in patient engagement?

  • The Parkinson’s Foundation and 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

Learn More & Pair Up with an Advocate

The Parkinson’s Foundation can match you with trained Research Advocates and recommend how they can help in all research studies — from preclinical to phase IV studies and in observational and non-pharmacological interventional trials.

If you are interested in working with a Parkinson’s Foundation Research Advocate, please contact Karlin Schroeder, Senior Director, Community Engagement at kschroeder@parkinson.org or our Helpline at 1-800-4PD-INFO (473-4636). We can discuss projects you have in mind, as well as suggest ways to collaborate with Research Advocates to improve your studies and speed the research process.

 

 

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