Amplifying Opinions of Patients & Caregivers for Higher Quality of Care

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Pam Cusick, Senior Vice President of Rare Patient Voice, sat down with me in this Fireside Chat. Among many other thought-provoking topics, we dived into diversity, equity, and inclusion in Pharma and clinical trials; ways to enhance the patient’s voice in their treatment journey and health decisions; the major barriers to patient-centricity in clinical trials, and much more.

Here is a sneak peek of our conversation:

Q: I think one of the questions is around the validity of the individuals who come in as patients or people with specific, chronic, or maybe not so chronic conditions. How is the system cleansed to ensure that these individuals are who they actually say they are or have the conditions that they say they have?

A: Great question. There are a couple of things. First, as I said, we go to these disease-specific events. That’s a pretty good way. If you want to go find hemophilia patients, go to hemophilia conferences and work with them there.

When people sign up with us, we have a very stringent process of checking different things like IP addresses and making sure that their conditions match the medications that they’ve recorded. If we have any questions, we will call them and verify the information. We are trusting that the patient comes to us with what they say they have.

Generally, our way of connecting with patients beyond going through these events is we work with support and advocacy groups. Some of the smaller groups might be a regional foundation or regional support group and we work with them as a referral partner. They might post a link about Rare Patient Voice or some information and then a unique link. When people sign up through that link, we will donate money back to that organization. With it, we’ll donate $10 per person who signs up which doesn’t sound like a lot of money but for some of the foundations that we work with, they’ve earned over $10,000 already so it’s a nice sum for them. It’s an incentive for them to bring people from their community to us.

We do people can sign up online but most of the people who sign up with us are through advocacy groups or through the events that we go to. We are really very careful because there is a lot of fraud in research. Sadly, people do want to pretend that they have a medical condition so that they can participate and earn money. We’re very careful about screening them before we allow them into the process.

There are some automated tools that we have, or if they’re not already been implemented, they’re on their way to being implemented. This kind of stops the fraud from coming to you from a click farm, bot, or something like that, before it ever hits our database. That will be very helpful also in the future to give an extra layer. But I know our patient advocacy team spends an enormous amount of time making sure that people are who they say they are.

For more of our discussion, you can watch the whole Fireside Chat with Pam Cusick, 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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