Beyond Asking the Doctor: Bringing the Patient Voice Into Clinical Research

I think that's incredible.

And I know that engagement with patients at the individual disease level comes up a lot.

And I'm thinking of all the things that you do in myeloma.

But you also do a lot of things with the broader oncology community to discuss policy, to discuss situations and issues for persons.

Can you help explain why you feel that's so important to represent what you're doing in your disease, but also work with broader groups?

When you look at health policies that are being implemented today in terms of access and implementation of new and innovative therapies that are getting more and more complex, it's not really about the disease itself, but it's about how you bring the new technology to the patient and what kind of resources and knowledge and structural changes that need to be made to the healthcare system to where there's a lot of gaps and there's a lot of things that fall through the cracks in my mind that affect not just myeloma, but all sorts of other diseases as well.

So to be able to make a change at the bedside of the patient, you really have to look at policies that are developing and how you get there.

A lot of these policies affect different cancer patients and population in exactly the same way.

So by bringing various cancer representatives and advocates to the table, then you're able to educate them, empower them.

empower them, engage them, and then involve them in some policy changes that are meaningful.

So if you can change what happens upstream really early in the process, I always like to use the metaphor of you go where the snow melts.

and start to affect changes there, then when it comes downstream, then the issues hopefully have either been understood, solved.

There's a lot of discussion around some of these policies.

I'm just going to use the example of CAR-T, which is an innovative treatment for blood cancers.

And it's been used in lymphoma and leukemia and myeloma.

But the actual CAR-T itself that is administered to the patient, it will be different based on your disease.

But the whole process around CAR-T in terms of the approach, the mechanism, how the T cells are being modified, how they're being reintroduced in the patients and the monitoring, etc., is all the same.

It's just the actual like T cell that is genetic modified to attack the specific type of cancer cells.

So if you could drive some policies around how to implement and how to introduce and expand CAR T at the bedside of the patient, then everybody would benefit.

Yes, myeloma is a small community because it only affects a small number of patients compared to some of the other cancers.

But if we work with other groups and band together and drive policy change, I think it is going to be much more impactful.

The other thing I want to say is that we're seeing changes in how people are engaging, especially around social media, right? When I started in advocacy, it was all about masses of people and being very active.

And I want to say a little bit more grassroots in terms of voices and going and marching, those types of sort of approaches.

Today with social media, it's very individualized.

People are influencers, but in a very sort of channeled way through their groups and tribes that they hang with.