Increasing Patient Involvement

What a busy couple of weeks! We traveled to Bellaire and Traverse City Michigan to visit relatives, spent two days at the Grand Challenges in Parkinson’s Disease Symposium held in Grand Rapids Michigan (more details below) and finished up with a trip to Bay City to visit with more relatives and friends.

In the Bellaire area we celebrated Mara’s brother’s 70th birthday and in Traverse City we helped out her sister at her used book store, The Bookie Joint, in downtown Traverse City (shameless plug). In Grand Rapids we had dinner with Rob and Carol Jones whom we first met at the Kripalu Wellness Retreat last October. We had a great time and caught up on changes to medications, symptoms, etc. since Kripalu.

In Bay City we visited with Mara’s cousins and met up with our friends Karen and Jerry whom we visited in Tucson, AZ in April. As I mentioned in the post about that visit, Jerry was diagnosed about the same time as I was last year. They were great hosts and a highlight was Friday night’s fried perch dinner.

The Grand Challenges in Parkinson’s Disease Symposium was held at the Van Andel Institute and provided a forum for people with Parkinson’s Disease to interact with some of the top medical professionals and scientists involved in Parkinson’s Disease research. The event featured information sessions and presentations aimed at those in the research/medical field, caregivers and people living with the disease. The symposium also included Rallying to the Challenge, a one-of-a-kind patient-centered meeting designed to highlight the many ways people with Parkinson’s disease can impact the clinical trial process and accelerate access to new Parkinson’s disease treatments.

The Rallying to the Challenge was kicked off by Tom Isaacs, PwP and co-founder of the Cure Parkinson’s Trust, a UK based Parkinson’s research organization. Tom was diagnosed with early onset PD 20 years ago at the age of 27 and has been an active advocate for Parkinson’s research since then. His presentation to the 250+ neuroscientists and medical professionals and the 100+ PwP and care partners titled “The Urgent Unmet Needs of People with Parkinson’s” was inspiring and he received a standing ovation from the entire audience.

Tom noted that the one constant he has seen in PwP’s is if they are involved in any constructive way they benefit from an improved sense of well being and fulfillment. Saying “We must make patient involvement the rule, not the exception”, he went on to set out the different unmet needs at the different stages of the disease. You can watch a prerecorded video of the speech here it is about 16 minutes long but it will be worth your time.

Patients and caregivers then joined Tom Isaacs and a panel consisting of PwP’s, representatives from major organizations including National Parkinson’s Foundation, Michael J Fox Foundation, Parkinson’s Disease Foundation, Parkinson’s Action Network, The Davis Phinney Foundation, The Brian Grant Foundation, Parkinson’s Movement, and The Cure Parkinson’s Trust along with patient advocates from around the world. We went over the results of a survey of PwP’s and researchers about what is needed for successful clinical trials. It was pretty exciting to be involved in this group all focused on one goal, increasing patient involvement.

The issue we brainstormed was how to overcome the fact that only about 5 – 10% of PwP’s participate in trials and up to 30% of clinical trials fail to recruit any participants. The goal was to find ways around the barriers that prevent participation. One of our team members was Brian Grant, a former NBA star who was diagnosed at the age of 36. He made an excellent presentation to the group on the benefits of teamwork.

The next day we rejoined the scientific presentation group and Tom Isaacs and the moderators from the breakout groups made a presentation on what is needed to increase patient engagement and clinical trial participation. Some of the points included getting PwP’s involved at the beginning of the trial so that our concerns are addressed up front, providing additional funding to pay for participants travel costs, and making use of current technology such as Skype so the participant doesn’t have to travel as often. The end goal is to make the process patient driven because with patient involvement more will participate in the trial, they will address patient needs, and they can be completed in a shorter time frame.

The conference was very educational and we added new “family” as we met many more PwP’s and care partner’s from the US, UK, and Canada. We were happy to see Bill Wilkins our fellow panel member from Atlanta on the Rallying to the Challenge team. Meeting Tom Isaacs and many of his panel members was an added bonus as it included many authors of blogs I follow and it was nice to meet them or hear them speak.

I have included a link to an easy to use glossary of the language of PD from National Parkinson’s Foundation under the PD Resources heading in the right hand column. If you do much research into PD you will come across a lot of new words and this link (or Google) will help you decode them.

We are home for a while and one of our goals is to switch my Parkinson’s care to a Movement Disorder Specialist (MDS) at the Vanderbilt Parkinson’s Disease Center in Nashville. They are one of NPF’s Centers of Excellence and only about two hours away from home. Stay tuned for our progress in that endeavor and my foray into brewing my own


  1. Tom, thanks for this incredibly generous review of the meeting in Grand Rapids. It is extremely motivating for us as organisers to receive such positive comments about the Rallying to the Challenge event. Thanks also to you for your contributions at the meeting. I am sure that our paths will cross again before too long.
    Tom Isaacs

    • Thank you for your comments and for organizing a truly inspirational meeting. Hopefully bringing together researchers and patients / care partners and advocates to work on the problem of patient involvement in clinical trials will result in the implementation of solutions that benefit us all.


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