How Patient Advocacy Can Positively Disrupt Healthcare

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Seth Rotberg, Patient Recruitment Manager at WEGO Health & Co-Founder of Our Odyssey joined us on the latest episode of Impetus Digital‘s Fireside Chat to share his views on how to empower rare disease patients, improve clinical trials, and move towards a truly patient-centric practice. We also discussed how and why Pharma should leverage social media and patient “influencers” to reach more patients, and much more!

Here is a sneak peek of our conversation:

Q: Is there an advantage of getting diagnosed when there isn’t a known treatment? Why do we want people to be diagnosed? Is there a school of thought out there of “What I don’t know won’t hurt me” or “You only live once (YOLO Theory)”? What would you say to people in general if there is a family history in terms of getting genomic testing? I’m curious about your thoughts about the rationale and potentially some of the pushback that might be coming from young adults in that process?

A: I’ll try to tackle all that. I think, one of the biggest things talking just about that genetic history piece is how are you receiving those results and what are you hoping to do with it? It’s going back to utilizing your support system, friends and family, but also your resources such as a genetic counselor. I actually didn’t go through genetic counseling and I was very fortunate that I had that good group of friends and, years later, my family as well. But, I wish I went through it because they would have made the process more manageable. I think it’s utilizing that resource of the genetic counselors, but then also eventually seeing a specialist that is knowledgeable of that condition.

I think that’s so important because it happens all the time, where you go to someone and they’re not as knowledgeable. Are you going to get the best care that you deserve or that you need? Again, I know that there are always challenges in finding the right specialist or finding the right person. To me, you really want to find someone that’s going to be willing to listen to the patients and work together to come up with a plan. The neurologist I work with specializes in Huntington’s Disease (HD), he does just that, and I think that’s the big thing.

What I’ve seen in the space, and I was actually talking about this in Our Odyssey meetup recently, is that there’s this kind of power dynamic between doctors and patients. I totally get it with the doctor having that background, that knowledge of “Hey, I studied this and I’m knowledgeable of this,” but how do we again, listen to the patients and make sure that they’re being believed? Especially young adults; unfortunately, females versus males, being believed like “Hey, this is what I’m dealing with, I’m not making this up, this is my challenge.” I think that’s where I would love to see more patients being connected during Medical School, and having that part of your curriculum where you hear that perspective so that you understand their challenges as they navigate those next steps.

Now, the ‘knowing or not knowing’ piece of things, I think that’s a personal decision. If there is a family history or if you’re feeling off, I think it’s important to figure out what’s the best for your health and doing what’s best for you. I think it’s, again, being prepared and making sure you’re getting the right resources. In my case, talking about Huntington’s Disease; imagine if I was given a list of patient advocacy organizations that I can reach out to or “Hey, go check out these Facebook group online communities” or eventually, “Hey, privacy permitted, I’m going to connect you to a local support group or someone else who’s been in your shoes so that you don’t feel that sense of isolation.”

I think those are the main areas and then also, it helps with the research. The more we know and the more we’re knowledgeable, the more we can hopefully help accelerate medical research and make sure that we provide access to the right care from a treatment standpoint as well…

For more of our discussion, you can watch the whole Fireside Chat with Seth Rotberg, or listen to the podcast version, below.

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About Impetus Digital

Impetus Digital is the spark behind sustained healthcare stakeholder communication, collaboration, education, and insight synthesis. Our best-in-class technology and professional services ensure that life science organizations around the world can easily and cost-effectively grow and prosper—from brand or idea discovery to development, commercialization, execution, and beyond—in collaboration with colleagues, customers, healthcare providers, payers, and patients.

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