Impatient for Patient Engagement in Parkinson’s Research

By Ronnie Todaro, M.P.H.

As the year comes to an end, the Parkinson’s Disease Foundation (PDF) has been reflecting on how developments of 2014 might impact people with PD and their care partners. One of these, which began as just a whisper several years ago and is now making a ruckus, is “patient engagement.”

As our readers may know, PDF has long believed in patient engagement. For us, patient engagement in research is a concept that goes beyond asking people to take part in clinical trials (although this is a very important piece of the puzzle). It means engaging people with Parkinson’s disease as partners — as advisors, mentors and co-investigators — to make research better. We believe that this will help to bring about better treatments at a faster pace.

In recent years, our team has increasingly heard scientists, pharmaceutical executives and nonprofit organizations also call for greater attention to “patient-centeredness,” and “including the patient voice.”

It was as if a huge switch had been thrown across the globe, illuminating the importance of including patients in research. After more than a decade of preparing people with Parkinson’s to work side by side with the research community through our Parkinson’s Advocates in Research (PAIR) program, we sensed excitement that the world was about to change.

Running While Standing Still

As we heard major players in scientific research embrace the idea of patient engagement, our hopes rose. We began to ask ourselves, are we reaching a tipping point? Is it possible that researchers will welcome patients as partners? Can it be that the institutions with the power to change research will usher in a new era of patient-centered research?

As quickly as our optimism grew, however, we found ourselves facing some sobering reality checks. While in fact, there were many discussions about patient engagement, those discussions rarely made it beyond theory — about what patient engagement is and is not; about whether it adds value to research or does not; and about whether there is proof that it works or does not. Missing from the conversations were real-life examples of how to include patients in research. We heard lots of “want-tos” but fewer “how tos” — demonstrating a willingness to include patients, but uncertainty about how to do it.

It is perhaps understandable that all of us involved — doctors, researchers, drug companies, patient advocates and even PDF itself, at times — tend to get stuck on square one. Changing research to include patients is not simple. It is a huge proposition, which requires changing institutional culture and power dynamics. This is particularly true when it comes to redefining the traditional roles of scientist and research subject. And there is no roadmap for this.

Certainly, the conversations we witnessed this year represent significant progress. But at PDF, we are impatient for true patient engagement to take hold. So how do we move forward?

From Conversation to Action

To move forward, we need leaders to step up to the plate, to show how patient engagement works by getting it done. Luckily, there are leaders in government, academia and industry. Each of them share one thing in common: a willingness to move from talking about the importance of patient engagement, to doing it. What does this leadership look like?

It looks like the work of Benzi M. Kluger, M.D., M.S., of the University of Colorado, one of the first recipients of a PAIR Leadership Award from PDF. Dr. Kluger is examining how outpatient palliative care can improve life for people with Parkinson’s, and he is doing so with patient input. He is collaborating with Diane Cook, a PDF Research Advocate, to design the study. He is also working with Kirk Hall, another PDF Research Advocate, to get patient feedback on planning, recruitment, measurement, analysis, and communication of the results to the PD community (Kirk is organizing a patient advisory committee).

It looks like the STEADY-PD clinical trial, which is being funded by the National Institutes of Health and conducted by the Parkinson Study Group. This study is investigating if isradipine, a medication that is approved for high blood pressure by the Food and Drug Administration, is effective in slowing the progression of PD. It is the first PD clinical study to invite people with Parkinson’s to serve on all of its major advisory committees and to involve patients in the full spectrum of planning.

It looks like the recent PDF-funded conferences on fatigue and gastrointestinal function (see article here). The topics for these meetings, which were funded by the first PDF Community Choice Research Awards, actually came out of a poll among people with Parkinson’s disease and care partners themselves. Not only that, the meetings brought together researchers, doctors and people with PD in one room, learning from one another and brainstorming ideas and solutions. In fact, researchers and doctors who attended commented that they were more likely to include people with Parkinson’s in future meetings based on their experiences at these conferences.

Looking for Leaders

Patient engagement is the new frontier. It is waiting for pioneers who are bold enough to step out of their comfort zones and up to the challenge of leading the field. And these pioneers must be prepared to lead even though research has not yet definitively proven that patient engagement works. Here at PDF, we believe that engaging patients is a game changer for ensuring that better care and treatments more quickly reach the people who live with PD. We also believe that it is only common sense, when identifying research priorities, designing studies and recruiting participants, to move ahead after involving both sets of PD experts — those who live with the disease day in and day out, and those who dedicate their professional careers to understanding it, treating it and curing it.

We need leaders who share this vision, who are ready to shake things up by authentically engaging patients and paving the way to making a patient-centric research model a reality. As the saying goes, “the journey of a thousand miles begins with a single step.” What we need are leaders who are ready to take it. Will you take that step?

Ms. Todaro is Vice President, National Programs at the Parkinson’s Disease Foundation. To get involved as a pioneer in patient engagement, contact PDF at
(800) 457-6676 or or visit

Back to Contents for Winter 2015 News & Review