Patient Engagement Works: Lessons from the Learning Institute Year Eight

todaro_ronnieTwo weeks ago, I sat in the back of a conference room in New Jersey, watching events unfold at PDF’s most recent Parkinson’s Advocates in Research Learning Institute, as I have for the past seven years. For the eighth year in a row, we were prepping a group of people with PD and care partners to understand the research process and how they can pair up with researchers to improve it.

As I sat there, planning details for the next day and ways to make the training better, I looked up and it hit me – it is working.

This concept of patient engagement in research, which started as a labor of love for the Parkinson’s Disease Foundation, has now become a part of our DNA. We believe the future of research and drug development lies in building authentic partnerships between researchers and people living with PD. And after eight years, we can see it working.


I glanced at the front of the room. There sat a group of seven people, including one fed in via video conference (see photo at right) – teams of people with PD, care partners and researchers – talking about their partnerships on projects and clinical studies in their own communities.

What was most exciting for me, was to hear the researchers one by one express their appreciation and oftentimes, sheer awe, at how the simple act of partnering with people with Parkinson’s led to improvements in their research. We heard similar sentiments from the people with PD, who are all touched and amazed at the dedication of researchers to improve life for people with PD, even if it meant taking phone calls at night and working on weekends.

The accomplishments of these researcher-patient teams included:

  • a focus on under-researched, but important issues that affect people with PD such as gastrointestinal issues;
  • a survey tool to understand why people with PD participate in clinical studies;
  • insights from people with PD on an experimental non-invasive form of brain stimulation called transcranial direct current stimulation (tDCS);
  • helping to develop a tablet-based patient education tool and;
  • collaboration on a grant to develop a coordinated palliative care program for people with Parkinson’s disease.

pair-class-2015These projects are just a sampling. But what they show is that the tide is turning.

As our newest 29 Research Advocates return to their communities and seek partnerships with researchers, they do so at an exciting time, in which researchers and patients are beginning to understand just how powerful they can be when they work together.

When it comes to Parkinson’s disease there are many mysteries we have to solve – about the brain and how it functions. But what our work with the PAIR program has taught us, is that one thing is certain – when we bring together the two kinds of experts – the scientists who study PD and the individuals who live with it  – we are likely to find answers more quickly.

Learn More about the PAIR Program

Veronica (Ronnie) Todaro, M.P.H., is Vice President, National Programs at PDF. In this role, she has pioneered national programs focused on patient engagement both at PDF and in the broader community. See her full bio here.

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