Tuesday, May 18, 2021





I am not referring to the fabulous song/album/box set featuring Eric Clapton when he was with "Cream" (though I am a big fan!).

I have a strong sense that we are at a critical moment in time in the PD world.  Many of my fellow PWPs that I have met at the World Parkinson Conference and through my association with the PDF Parkinson Advocates in Research (PAIR) program are excited that the potential benefits of patient participation in clinical research study design, implementation, and evaluation is now a major topic of conversation.  I have the privilege of being involved with two studies (the palliative care study that I wrote about previously and upcoming PD cognition research study.

A cynical person might speculate that this surge is not necessarily the product of an epiphany in the medical research world.  Some might speculate that this development is closely linked to major research grant funding that has been made available by the Patient Centered Outcome Research Institute (PCORI), which places a priority on patient involvement in research.  They believe that patients bring a unique perspective to these studies that can help ensure that the studies are focused on issues of importance to them and that they are conducted in a way that the outcomes will address patient's needs.  As a result, including patient stakeholders in grant proposals increases the chance they will be approved.

At the end of the day, it doesn't really matter what brought us to this point.  In my opinion, a wonderful opportunity has been dropped in our (patient's) laps.  What we do with that opportunity will determine whether this trend continues or "dies on the vine".

Regardless of what you may hear, there are researchers who are either opposed to patient involvement or, at least, skeptical.  I have had the opportunity to "break ground" in this regard by participating in two research consortium meetings for the purpose of providing patient input.  In one, I was treated rudely (the meeting chairperson apologized to me afterward).  In the other, when asked if I had anything I would like share, I brought up a topic I thought was relevant and of importance to patients for research purposes. The immediate reaction from some in the room was to denigrate my suggestion and move on.  Fortunately, others disagreed and commented that my idea was relevant and worthy of consideration, resulting in about ten minutes of discussion.

I will admit that I was offended that some wanted to dismiss me "out of hand".  But after thinking it over, I realized that this type of reaction was understandable and predictable.  They are not bad people.  Maybe egotistical, "turf-minded", and slow in accepting new ideas that they perceive as threatening.  But that is part of the reality of human nature.

As the patients who have been recruited into these situations, we have to decide how we are going to react.  We can insist that we be treated fairly and given a chance.  Be indignant and put these recalcitrant individuals in their place, by God!  On the other hand, who can really blame them?  They have devoted many years of their lives developing expertise beyond the grasp of all but a few.  Now they are having people who don't know anything worth mentioning about what they do shoved down their throats.  They are understandably irritated and resistant.

I would suggest that patients take a different approach.  In order to earn respect, we will need to deliver value, plain and simple.  And let's be clear, we do have value to offer regardless of what anyone may think.  We are the ones living with this disease day in and day out.  Years of education and experience are invaluable, but they don't provide that perspective.  Similarly, neither can our personal perspective replace the expertise of researchers.  IT IS THE COMBINATION OF RESEARCHERS AND PATIENTS WORKING TOGETHER, EACH BRINGING VALUE TO THE TABLE, THAT WILL PRODUCE THE RESULTS WE ALL DESIRE.

I would encourage both researchers and patients to choose studies for patient participation cautiously to ensure that patients can, in fact, make a valuable contribution to a particular study.  Some studies will not be appropriate.

I am very excited to be a stakeholder in the PD Palliative Care research study I have been talking about.  I can't think of another study that has the potential to benefit from patient involvement as much as this.  Not only that, there is a significant opportunity to improve the lives of patients, caregivers, and their families at all stages of the disease if we get it right.  I take that very seriously.


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