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TURNING THE TIDE FOR RARE DISEASE

Rare Patient Voice: Helping patients and caregivers share their voices

Our team and community engagement associate Becky Pender caught up with Pam Cusick , senior vice president at Rare Patient Voice to hear how they are turning the tide for people living with a rare disease and bridging the collaboration gap between patients and researchers. ?

1.?Just how important is the patient voice?

The patient voice is the centre of our universe. Products are created for patients, trials need patients to be successful, advertising and marketing need patients in order to ensure effective messaging—the list goes on and on. Importantly, patients need to know that they can be a part of the process. I cannot count the number of times I have been at a patient event sharing what Rare Patient Voice does and a patient has asked me why someone would care what they have to say. Of course, I tell them that they are the experts and that always makes them happy. Our vision is to include the patient voice in research and ultimately improve the lives of patients everywhere. ?

2. Patient engagement is finally starting to be seen as the gold standard when it comes to research and development. How does Rare Patient Voice support their clients with this?

We bring the patients to our clients. In the past, it was often hard to find patients for research. Luckily, we have built a community of nearly 150,000 patients and family caregivers who want to participate in research. They are not people who signed up with us arbitrarily, they come to us because they want to share their expertise. Whenever a client comes to us with a challenge, we always do our best to find a solution. One unique aspect of Rare Patient Voice is our internal patient advocacy team. They have built a network of nearly 5,000 referral partners around the world who help us to bring together more patients for research. They support our patient community and share patient stories which helps us to engage with even more patients and their families. Rare Patient Voice empowers patients and family caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives. ?

3. What type of research activity is Rare Patient Voice able to undertake?

We connect our patients with all types of healthcare research studies, including market research (e.g., interviews, focus groups, surveys and online communities), health economics and outcomes research (HEOR), usability studies, and clinical trials. Rare Patient Voice is built on the core values of being a supportive resource for our patients, a reliable partner to our clients, a responsible employer for our staff, and a good citizen in our community. We are always listening to three key voices; our patients, clients, and employees. ?

4.? Does Rare Patient Voice only operate within rare disease?

We started out with rare, but over time patients and their family members would ask if they could sign up with other chronic conditions so we said of course. We don’t want to exclude anyone. Many patients have multiple conditions, and we want to give them a chance to share their voices about all of these. The RPV community now spans over 1,500 rare and non-rare diseases and conditions. ?

5.? What about recruitment? Can Rare Patient Voice help researchers recruit patients to studies and clinical trials?

Yes, with over 150,000 patients and family caregivers, many of whom we’ve met at patient events, recruited through our relationships with patient advocacy groups, or were referred to us by other members, we are uniquely positioned to help with clinical trial recruiting. Since our patients have signed up to contribute to research, they are more likely to show interest in trials than the general population. We provide a dedicated project manager to work directly with your team. Our patient advocacy team will seek out and connect with relevant patient support and advocacy groups, and attempt to recruit respondents on social media using IRB approved materials. ?

6.? Which countries can Rare Patient Voice support clients in? Are there plans to expand?

We are currently in nine countries: US, Canada, UK, France, Germany, Italy, Spain, Australia, and New Zealand. We may expand to other countries and want to do so judiciously. It is important for us to have our website translated into each language and to have project managers available who speak each language. We want to give as many patients as possible the opportunity to participate in research and we have to do this in the right way, ?

7.?? In 2023 Rare Patient Voice turned 10 years old. What are the hopes for the next decade?

There are so many possibilities, especially as patient input is being integrated into so many areas. We see more requests for patients to be included in trial design and in developing patient-friendly summaries of research. Co-design is a wonderful concept and I’m looking forward to seeing more of that too. The possibilities are nearly endless for sharing the patient voice with various industries. I think our community will grow to include even more patients and family caregivers across additional conditions and I expect we will add a few more countries too. ?

8.?How can potential clients get in touch with you?

Clients can email me at?[email protected]?or Tiffany White, our director of business development, at?[email protected]. We are always happy to learn about potential client needs and share how Rare Patient Voice can help. ?

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