How can advocacy groups help the communities they serve?

As part of our video series For the Health of It, Komodo’s Chief Marketing Officer, Bill Evans, spoke with Stacie Lindsey, Chief Executive Officer and Founder of the Cholangiocarcinoma Foundation, about data and how her foundation supports cholangiocarcinoma patients and caregivers.

In the first part of the interview, published last week, Stacie and Bill discussed the valuable role data can play in the diagnosis and treatment of this rare disease. In part 2, the pair talked about how the cholangiocarcinoma community may benefit from new types of digital care and other healthcare technology, like biomarker testing – and the importance of advocacy and awareness around this difficult-to-diagnose cancer.

Check out the video of the conversation between Bill and Stacie. A transcript of their discussion follows:

Bill Evans: Like most complicated diseases, I would imagine that care coordination is a very difficult undertaking for these patients. How is digital transforming that for this patient population to make it easier for them to access some of the services they need to get the help they require?

Stacie Lindsey: I hope that post-COVID some of the things that we have learned will stay in place, and I think telemedicine is one of them.

Cholangiocarcinoma is most often seen in patients 65 or above. It is increasing in the younger population, but that’s the significant population we’re dealing with. These are people who want to be seen [by a specialist] where they live. [Unfortunately,] there often are not specialists in a lot of areas. So telemedicine makes available to them. They can see a specialist anywhere. We really hope that will stay.

Bill: What do you think the expanded role of data in technology is beyond the clinical trial?

Stacie: The opportunities with data are extensive. One of the problems is that data does not speak advocacy, and advocacy does not speak data. There’s a language barrier there. As we grow together and expand these relationships, I think we’re going to find that there are many opportunities that we haven’t even explored yet. It’s exciting. And it’s a new horizon that we’re looking at. But one of the things that we have to really overcome is speaking each other’s language so that we can collaborate together in a more synergistic way.

Bill: For other foundation heads, like yourself, what would you suggest is the way to bridge that divide?

Stacie: One of the things that we've talked about is creating a “brain trust,” or a working group of foundations, with Komodo and other data companies. Each foundation can’t have someone who understands data, understands medical writing, and understands advocacy. So perhaps we can share resources. We can also talk about ideas like: What are you thinking about doing with this data? How are you going to use it to improve patient outcomes?

Bill: What is the one thing happening today that you see having the longest-term impact in terms of changing the experience for these patients?

Stacie: Biomarker testing is big for our patient community. If we could get everyone tested, we could take a look at the [specific,] appropriate treatments based on what comes up in their tests. That gives the patient so much power. [Often] patients are not getting this testing, or they’re not getting the testing early. So then, they don’t even know that they have any options.

That’s sad, because this is an exciting time for cholangiocarcinoma patients. We just had our first FDA approval at the end of last year and we have more exciting things coming in the pipeline – but, [because those treatments interact with specific genetic mutations or other biomarkers,] they can only be accessed with biomarker testing. We really need to get that information out to our patients and get them to take advantage of that opportunity.

Bill: What can our viewers do to support your foundation, this patient population, or nonprofits like yourselves in disease areas that may be closer to home for the particular individual?

Stacie: There are many things that people can do to support specific disease states, especially ones that affect their friends and family. It’s really important to connect the patient, not only with a [medical] specialist in the disease but also with advocacy groups.

Advocacy groups support the patients emotionally. They can help with financial support. They can help with educational support. They can provide caregiver support. There are all kinds of things that we can help with that medical professionals may not help you with.

Bill: Thanks, Stacie, it’s been great to have you join us on For the Health of It. I want to thank you so much for sharing your insights today. To learn more about cholangiocarcinoma and what Stacie’s Cholangiocarcinoma Foundation is doing to support the community, please visit Cholangiocarcinoma.org. And to learn more about Komodo and how we are working to reduce the burden of disease, please check out komodohealth.com and be sure to follow us on social media including LinkedIn and Twitter for news and updates about future episodes. See you next time.