Patient Engagement

The Parkinson's Disease Foundation (PDF) has long been committed to making patient engagement a reality in the Parkinson's community.

For PDF, patient engagement means engaging people with Parkinson’s disease as partners — advisors, mentors and co-investigators — in every part of our work.

Why? Because patients are the ultimate consumers. We know that when advocates from other disease communities became partners in research, education and advocacy efforts, community needs were met more effectively and treatments were found more quickly. The Parkinson’s community should be no different.

PDF's commitment can be traced over the past decade:

  • Beginning with PDtrials.org, established in 2004, as the first website and community coalition help patients understand and find clinical trials;
  • Continuing with the creation of the PDF People with Parkinson's Advisory Council, in 2006, the first council of its kind in the Parkinson's disease community;
  • Expanding significantly since 2008, with our focus on patient engagement through the Parkinson's Advocates in Research program, which has trained 260 volunteer patient advocates (people with Parkinson’s and care partners) to serve on the frontlines with the professionals seeking better treatments for their disease;
  • Taking on new meaning with the establishment in 2013 of the Community Choice Research Awards, a "people's choice award" of Parkinson's research in which the community has direct input on the research we fund; and
  • Broadening in recent years, as PDF has continued to advocate for patient engagement in the broader Parkinson's community, as well as within the drug development and scientific research sectors. Our team has forged relationships with research professionals to ensure that opportunities exist for our trained patients advocates to share their insights. We also provide regular guidance to research professionals and patient advocates on how they can work together to find the cure.

Learn More:

Read: What People With Parkinson's Really Want (Veronica Todaro, M.P.H., published in Everyday Health)

Read: Impatient for Patient Engagement in Parkinson's Research (Winter 2015)

Read: Patient Engagement in PD Research and Why It Matters (Summer 2013)