Patient-Centric, Knowledge-Driven: Advanced Therapeutics in Movement and Related Disorders™ Congress

Jean Hubble, MD

“Its all about the patient, first and foremost!” This patient-centric focus became evident during the ATMRD Congress opening remarks made by Fernando Pagan, MD, a movement disorders specialist and professor & Vice Chair of Neurology at MedStar Georgetown University Hospital. This was the second year for the ATMRD Congress. This annual medical education program is offered by MedStar Georgetown University Hospital with Dr. Pagan and Dr. Yasar Torres-Yaghi, Movement Disorder Specialist at MedStar Georgetown, serving as Course Directors. The meeting is hosted by the Parkinson & Movement Disorder Alliance (PMD Alliance).

Learning how to offer optimal individualized care and treatment to all people with Parkinson’s and movement disorders is the ultimate goal. But in order to achieve this, clinicians must be armed with fact-based information on all treatment options especially newer medications and technologies. What does good clinical care look like? It must be both patient-centric and knowledge-driven. To this end, ATMRD consisted of didactic lectures, hands-on workshops, and panel discussions to provide the attendees with the fundamental understanding of all available treatment options with special emphasis on new and emerging medications, devices, and diagnostics. Just as importantly, the faculty and participants worked together, formally and informally, to consider how best to apply this therapeutic knowledge for the individual patient. This approach is echoed in PMD Alliance’s Movement Disorder Care & Support Ecosystem; for more information, go to www.pmdalliance.org/ecosystem.

At the congress, it was frequently emphasized that medications, devices, and other technologies are not the only components of truly effective patient treatment and care. What’s the saying? “Man shall not live by pills alone.” ATMRD faculty and presenters pointed out that physical exercise, maintenance of cognitive skills, proper nutrition, and psychosocial support are also essentials in fostering health and well-being. You can gain more information on all aspects of the management Parkinson and movement disorders by receiving announcements on PMD Alliance virtual educational programs www.pmdalliance.org/events.

Patient-centric and knowledge-driven treatment plans are terrific! But what if you can’t access these due to obstacles with health insurance coverage and reimbursement? This is a complex, thorny topic but ATMRD organizers didn’t shy away from it. A robust panel discussion was held on this matter and, importantly, an individual with Parkinson’s was on stage for this. Yes, patients and their care partners have to become experts and advocates on treatment access. There is not a single, easy solution to this issue, but it’s important for everyone to fight for the best, most equitable access to treatment. PMD Alliance is a part of this effort www.pmdalliance.org/treatmentoptions.

Who attended the ATMRD Congress? Participants included practicing neurologists focusing on movement disorders. Also in attendance were neurologists in-training, neurology residents and “movement disorder fellows.”Despite its name, the designation, “fellow,” has nothing to do with gender. Movement disorders fellows are individuals who have completed their 4-year internship and residency in neurology and are now completing 1-2 year specialty training focused solely on movement disorders. I was impressed with the residents’ and fellows’ thirst for knowledge as they seemed to want to know everything about the latest technologies and clinical research data. But I was truly amazed at their passion and enthusiasm for patient-centric care! Their open hearts and open minds bodes well for the next generation of specialists caring for individuals with movement disorders. To give you an idea on their level of enthusiasm, at one point in the meeting, I invited the fellows and residents to give me their contact info if they were willing for me to gather their feedback by phone following the meeting. How many volunteered? Let’s just say that its fortunate that I have an unlimited call plan!

Another large portion of participants at the ATMRD congress this year were Advanced Practice Providers which includes Nurse Practitioners and Physician Associates. I met APPs who are just out of training and hungry for basic knowledge on Parkinson’s disease and movement disorders as well as APPs who have been focused on care and clinical research in this area for several years. Appropriately, these expert APPs served as faculty and presenters during the congress. During a coffee break, I asked a group of APPs, “what do you think about the patient-centric approach to patient care?” After a bit of laughter prompted by my question, one of the NPs gently explained to me that individualized patient-centric care is the entire basis of their APP training and discipline. The role of the APP in best treatment and care for individuals with Parkinson’s and movement disorders is already important and will only continue to grow. For more information, please go to www.amdapp.org.

I want to end by congratulating Drs Pagan and Torres-Yaghi, as well as all the faculty and presenters at this year’s meeting. Well done!

And, to the industry sponsors of this year’s ATMRD congress, I say a big “Thank you!” The meeting would not be possible without your sponsorship.

But the real force behind this program is PMD Alliance, now lead by CEO Andrea Merriam Crespo. In fact, the meeting’s origin is the brainchild of PMD Alliance Founder, Sarah Jones. The entire movement disorders community owes you their gratitude. Please consider supporting the Alliance by going to www.pmdalliance.org/give.