The Parkinson Alliance Pays Customer Visit to Medtronic
The Parkinson Alliance was recently invited to the Medtronic Neuromodulation Headquarters for a “customer visit.” This visit was a tremendous opportunity to learn about Medtronic at a deeper level as well as to educate some of Medtronic’s staff about The Parkinson Alliance and our work with DBS patients and the community.
Medtronic is known for introducing innovative technology and improving the lives of patients. They partner with medical professionals to develop life-changing technologies that improve the way chronic diseases are treated.
We met with researchers/engineers and were informed about the advancing technology designed to improve treatments for a variety of medical problems (e.g., Parkinson’s disease, diabetes, chronic pain, epilepsy, to name a few). It was quite evident that these individuals were committed and passionate about bettering the lives of individuals exposed to debilitating medical diseases.
We were introduced to a variety of facets of the Neuromodulation Division of Medtronic, and participated in talks pertaining to brain infusion technology, the technology behind and improvement of DBS therapy, and the effectiveness of their neuroscience therapy. We also discussed their educational programs for patients, physicians and programmers.
Medtronic delivered a very powerful “take home” message. They stated that they not only embrace sound scientific methods and “life altering” inventions to help improve the quality of life for “future patients,” they look for ways to enhance the lives of individuals who have already received such interventions. For example, they underscored the point that they are also enhancing and improving intervention for those who have undergone DBS in the years past.
This visit was of mutual benefit. We wanted to learn about their education programs, and they in turn wanted to learn about our work. We took the opportunity to share Margaret Tuchman’s vision that emerged 10 years ago. She had DBS in 2000, and she was acutely aware that there were many unanswered questions related to DBS, and “the patient” was often left uninformed and unclear about treatments related to PD, particularly DBS and its benefits and limitations. Margaret had a “dream” to create a resource within the PD community that supported patients and care providers, and to also support innovated research endeavors designed to help improve treatment options for PD and to hopefully find a cure for this disease. One of her many goals was to create a repository of information related to DBS designed for the PD community, and her vision has become realized through our website DBS-STN.org and our patient surveys.
In this vein, we were asked to provide a presentation on “Working with Patient Advocacy Groups”, during which we took the opportunity to educate Medtronic’s staff about The Parkinson Alliance and the importance of understanding the “patient’s voice”. Carol Walton, the CEO of The Parkinson Alliance, addressed several key points including:
- Introducing the history and evolution of The Parkinson Alliance
- Advocating for patients’ with PD—The Unity Walk, Team Parkinson , and DBS-STN.org website
- Keeping the DBS community connected and informed
- Improving DBS Patient Outcomes (e.g., the importance of coming together as a community and improving the care for DBS patients through addressing, for example, Patient Selection, Patient Education, Programmer Training, Physician Training
- Explaining the outcome of the worldwide DBS Consensus Meeting that was held in New York City in April of 2009 (see DBS-STN.org for a description of the Consensus Meeting)
Dr. Jeffrey Wertheimer, a research consultant for The Parkinson Alliance, also facilitated a presentation consisting of:
- A description of the survey-based research that we have conducted
- Some specific data pertaining to “The Patient’s Perspective”, particularly as it relates to individuals with DBS
We presented the results of our 9 patient surveys that have been conducted to date, including data related to the “patient’s perspective” on balance, speech, quality of life, coping strategies, sleep, depression, anxiety, and motor symptoms. Please refer to the following link to read more about these and other topics: http://www.dbs-stn.org/survey.php
In closing, Medtronic appeared very receptive to The Parkinson Alliance’s contributions and objectives. There appears to be some opportunities for Medtronic and The Parkinson Alliance to collaborate in the context of the mutual goal of bettering the lives for individuals with Parkinson’s disease.