Back in the good ol’ pre-covid days of 2018, I went to my neurologist, Dr. Alfonso Fasano, with an idea about speaking to the doctors at my clinic about the journey I’d been on as a patient advocate. He loved it and arranged a talk at the Toronto Western Hospital (TWH) for the entire Movement Disorder Clinic (MDC). Among those who gathered were Prof. Anthony E. Lang, one of the world’s most cited neurologists and head of the TWHMDC (I know, what an acronym eh? ;).
Little did I know that during my talk, Dr. Fasano was putting the idea in Dr. Lang’s head of starting a Patient Advisory Board for the clinic. Dr. Lang was enthused and as soon as I finished speaking, he stood and announced his intention to start a PAB in Toronto.
Since then, the PAB for the TWHMDC, under the leadership of its chair Hugh Johnston, has begun to reshape the face of care for people with Movement Disorders in Toronto. It took a while, and COVID certainly didn’t make it easy, but over the last two years the board has hosted two events on Deep Brain Stimulation attended by over 400 people, put out a quarterly newsletter read by thousands, and co-created along with Dr. Sarah Lidstone and her team a new branch of the clinic focused on delivering integrative care.
My experiences with that PAB led me to believe that every clinic, research center, medtech, biotech and pharmaceutical company in the world should have a PAB of their own that they invest in and give real power to.
And so, last fall after getting in touch with Brian Pepin, CEO of Rune Labs, I suggested that they too should think about starting a PAB of their own. Just a few short months later and the Rune Labs Patient Advisory Board was born…(well, tbh it’s still in the delivery room. But, born sounds better.)
Why Rune Labs?
I am passionate about ensuring that patients like myself get the personalized care they need to maximize their quality of life. Parkinson’s disease sucks, however, it is often made worse by the fact that our healthcare systems lump all patients under the umbrella of a single disease label.
One thing that first drew me to Rune Labs was their partnership with UCSF. Together they are working to better understand the different types of PDs. Rune Labs’ platform summarizes all data collected (e.g. electrophysiology from Medtronic’s Percept DBS device, wearable activity data, PROs, clinical scores, medications, etc.) for individuals living with Parkinson’s diseases and their care teams.
Last June, I had a DBS device implanted myself with the hope that it would enable me to live better than I could before. Mine is a bit different from the standard DBS because it can sense the various frequencies in my brain and adapt stimulation accordingly, AKA adaptive DBS. I have come to believe this new version of DBS will be the future for many people diagnosed with PDs.
However, the current devices do not give patients, their partners, or their care teams nearly enough information to make meaningful decisions about their health. Rune Labs’ software aims to speed the development and delivery of precision neurology for Parkinson’s diseases by providing access to comprehensive data on patients’ symptoms, medication use, and brain activity, for clinicians, patients and their care teams.
As the chair of their PAB, I will work closely with the team to ensure that patients get the personalized therapy that this new technology makes possible. I will also reach out to a few other patients to help run the board and contribute to all that Rune Labs is doing for people diagnosed with PDs all over the world.
One additional example of what I’ll be working on with the team at Rune Labs is StrivePD, a HIPAA compliant patient-facing app that allows individuals to track their symptoms and medication use in advance of clinical visits. The app was originally developed by a patient who saw a need for personalized care for PwPDs. Paired with an Apple Watch and DBS device (if applicable), Rune Labs combines and summarizes all that data into an easy-to-use dashboard that helps movement disorder specialists tailor and improve patient care. StrivePD can be downloaded for free from the Apple iOS store here.
Headquartered in San Francisco, Rune Labs works with leading hospitals, universities, med-tech organizations, and pharma companies to better understand the needs of patients and enable their partners to develop and deliver precision neurology. The team is actively looking to expand their cohort by partnering with movement disorder specialists to use their software and app.
If you have any questions or would like to learn more about the people behind this initiative, please visit their website by clicking here. Or if you would like to learn more about how they can partner with you, feel free to contact either myself or the team directly at email@example.com with any questions or ideas.
Over the weeks and months to come I will have a lot more to share about this PAB and the people behind the scenes at Rune Labs as we look to bring on new members and contribute to all the exciting work the team is doing to change the face of care for people diagnosed with Parkinson’s Diseases.
Once again, looking forward to all that the future has in store,
Now proud to add: Chair of the Patient Advisory Board to Rune Labs
And always, Co-author of Brain Fables
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