The following first appeared on tmrwedition.
Elizabeth “Eli” Pollard is the Executive Director of the World Parkinson Coalition(WPC) and has helped steer the organization, alongside world renowned Parkinsonologist and WPC founder, Dr. Stanley Fahn, since its inception in 2004. Together they have worked to grow WPC Inc. from it’s sole purpose, of hosting a triennial global Congress on Parkinson’s disease, to it’s more meaningful place in the community today, as a hub for many of the global PD organizations to connect and intersect online, on teleconferences, or in person at the Congresses. Eli is thrilled with the opportunity to meet the members of the community, to help build the WPC Legacy, and to watch as leading researchers, clinicians, people with Parkinson’s(PWP) and others work together to bring us closer to finding the cause(s) of Parkinson’s and a cure for the disease.
The following has been paraphrased from an interview with Eli Pollard on January 5th, 2018.
(Click here for the full audio version)
Can you compare what both the state of research and the global PD community were like before the first world congress in 2006 to today?
When I started in 2004 there was very little patient engagement in the clinical research process. There were some PWP working in DC to influence policy and raise money for research, but they were never included in the research process. They were only brought in to help raise money and then to sign up after the research was designed. PWP are now more engaged in that process thanks in part to organizations like the Parkinson’s Foundation, Parkinson’s UK and the Cure Parkinson’s Trust.
I distinctly remember at the first WPC this one scientist who gave a really engaging talk about tremor. At the end a PWP stood up and said ‘I really liked your talk, but my tremor doesn’t really bother me, the reality is I can’t sleep, when are you going to do research on sleep?’ The researcher, who had been so excited about his research, was stumped. This really emphasized the need to involve the people you are trying to help at the beginning of the process. That is now happening more and more through organizations like PCORI that require patient engagement to get funding.
In your decade+ of work bridging the PD community together, what have been some of the biggest mistakes made along the way?
Not including PWP at the table. One big example was from the GDNF trial which was cancelled abruptly in 2004 because they said there was data that some participants were being harmed. But the mistake wasn’t that they cancelled the trial, the mistake was that the company running it didn’t tell the people in the trial that they were cancelling it. They told the investigators and then announced it in the Wall Street Journal because they were more concerned about their shareholders than the participants. I’ve seen that mistake repeated over and over and over again. I understand why PWP are frustrated with clinical trials and the companies that support them. They want your brain to do research on it but if they don’t hold you in high regard and value your contribution then what is the point? It is getting better but I still see those mistakes getting made. There was a trial very recently that was stopped because some of the PWP died in one of the phases and that didn’t come out till they were already in the next phase of the trial. Not even the patient advocates working for the company were told about it.
Are there any other changes you would like to see from the medical community in their engagement with the wider PD community?
There has been a shift towards looking more at interdisciplinary care and when you talk about it people say that it sounds great but the reality is that not many people actually do it. There is enough research now to show that outcomes are better if you are seen by a comprehensive team that might include a movement disorder specialist, a nurse that actually does case management, a physical therapist, an occupational therapist, a speech pathologist, a social worker, and even psychologists or psychiatrists. We need a continued effort to build more of these interdisciplinary care teams from the medical community. We have seen the numbers of people doing this going up but we need more acceptance of this model.
What changes would you like to see from the patient community in their engagement with the wider PD community?
The patient community is doing a lot of amazing things all around the world but I’d like to see PWP be a little more demanding. For instance, if they don’t already have one they should be seeking out a Parkinson’s specialist. There are many people here in the US who don’t even see a neurologist, let alone a movement disorder specialist. I want people to educate themselves more about the disease so they can make more informed decisions and demand better care.
Many years ago I had a meeting with someone from a very large pharmaceutical company. I asked him about the challenges of bringing patients into medical meetings, which is really strict and each country has its own pharma code. At the time we were setting up for the WPC in Glasgow and we were facing all these restrictions around bringing the groups together. I asked him about his booth at an AIDS meeting because I saw that there were people who were HIV positive in that space, why would he do it with them but not with us? He just said ‘because we are afraid of them, you guys are all so nice, no one is really demanding it. Also you don’t know if someone is HIV positive, with PD it’s harder to hide it.’ There is also a different dynamic and a different demographic but I would like to see PWP be more like an activist than just an advocate.
Is there anything in particular you wish was said to young researchers as they entered the field?
I think it goes back to listening to PWP. Not only should you be surrounding yourself with Parkinson’s in the clinic, but making sure you see it outside of the clinic as well. You can do it through support groups or attending meetings like the WPC to engage with PWP, or even find your own patient ambassador or liaison, someone you can go to and get their perspective. A lot of the basic scientists still rarely see patients. Even clinical researchers need to see patients more outside of a clinical environment. At every WPC I talk to scientists who tell me they never see PWP and I know it is very inspirational to them.
What are you most looking forward to from the WPC in Japan next year?
The program is shaping up really nicely, I think there is some amazing stuff that is happening, particularly in stem cell research from doctors in Kyoto.
I’m also just excited about taking the WPC to Asia, it’s been in North America and Europe, but this will be our first in Asia. It is tough finding people there willing to talk about it, there is still some taboo around Parkinson’s there, so this opportunity to raise awareness is very exciting. Also some of the most famous and recognized scientists in the world are working in Japan, but a lot of them have not been to a WPC. For a lot of them this will be the first time they will see people from outside Japan living with Parkinson’s. We have a chance to make a huge impact in Japan and hopefully across Asia.
Hope to see you in Japan next year.