It has been almost two years since I began working for Medidata as a paid consultant. It is a task that I find stimulating, gratifying and rewarding. Work that I am proud of.
Alicia Staley, a cancer survivor herself, created the Patient Design Team in 2019 and brought me on board.
Unlike so many panels I have been asked to sit on, or visits to pharmaceutical companies, this is not a one off. We are a cohesive team that has slowly grown and which will eventually have fifteen patient advocates. Alicia and T. J. Sharpe–who was originally a member of the team but is now a Medidata employee–have created a fun but also incredibly meaningful experience for our group. We feel respected–seen and heard–but even better, truly regarded as experts on the patient experience. Medidata, ‘the global leader in creating end-to-end solutions to support the entire clinical development process‘ is providing us with the opportunity to help design their product. It is an innovative approach that was recently recognized by industry, as Alicia and her initiative took a first prize in the 2021 Scope Participant Engagement awards.
You can see the (short!) winning video here with footage from our last in person meeting. Please take a gander. And Alicia, please take a bow. You rock.
So physically I am slowing down a bit and I can’t say I like it. It is difficult to feel your body failing and the fact that this isn’t my first rodeo doesn’t make it any easier.
Alice has been great about checking in even though she’s got oh so much on her plate (goddess goddess goddess). She called last night and we both agreed that at my next appointment on November 14 we will revisit the idea of adding chemo to lorlatinib. Now I’m not crazy about another go with platinum therapies—I’ve previously been treated with both carboplatin and cisplatin and neither was a picnic. Nor did either of them ever knock down my cancer, but as Alice reminded me, I remained stable while receiving chemotherapy. And stable would be a boon until that clinical trial opens up. We would both like to keep me breathing—literally, but also in the greater sense. So we’ll see where I’m at in a couple more weeks.
In the meantime, I remain extraordinarily busy. I just spent two days in New York City at a Patient Design Studio with the life science technology company Medidata. My friend and fellow cancer advocate Alicia Staley is heading up their effort to become truly more patient centric when designing products. As I said at the conclusion of the workshop, it felt as if we were being invited not only to have a seat at the table, but to help prepare the meal. And better yet, this workshop was not designed to be a one off–this shall be an ongoing relationship. Progress, my friends.
While In NYC, I posted some photos on instagram and my niece Riian, who I’d not seen in years (we became related through my first marriage), and who lives in NY, reached out to me. We went to dinner on my last night, compliments of my sister in law, her mom (thanks Steph!). So much fun. And by coincidence one of my favorite researcher/scientists, Lars Engstrom, flew into NYC from California with his ten year old daughter Tova the day before I departed. So after dinner with Riian, Lars and Tova took me to the top of the Empire State building. Incredible!
This coming week I have my second practice for TEDX (I’m giving a TED talk! November 23 in Boston). I am super excited but also nervous. Lots of memorizing and in front of a live audience as well.
And then my vintage clothing business, House of Redemption, is rising from the ashes. It will be reopening in Mill No 5 in Lowell. I have taken on two partners, Sean and Marianna, (adopted them, really). This is not a money making venture so much as a responsible way to deal with my rather vast collection. And it should be a ton of fun as well. Pictures once we are up and running!