Amplifying the rare disease experience: A Q&A with Rare Patient Voice
The Antidote partner network is a key element of our ability to build relationships with patients and increase awareness surrounding medical research. By providing Match, our clinical trial search tool, free of charge, we are able to assist advocacy groups, nonprofits, and more in providing patient-centric clinical trial listings to empower their audiences.
Recently, we sat down with our partner Rare Patient Voice, an organization that connects patients and caregivers with opportunities to share their opinions and participate in research studies. We chatted with Senior Vice President Pam Cusick about the organization hitting a 10-year milestone, forging new relationships with patients, and patient centricity in medical research. Read our Q&A session below!
A conversation with Rare Patient Voice
Rare Patient Voice recently celebrated a 10-year anniversary. First, congratulations! Secondly, what are you most proud of when looking back on all the organization has accomplished?
Thanks! We have grown significantly over these past 10 years and are looking forward to an exciting future at Rare Patient Voice! One of the things I am most proud of is expanding our horizons to include different areas of research in addition to standard market research. Examples include clinical trials, human factor and usability studies, and accessibility and disability studies, to name a few. If you really think about it, patients can be included in so many areas of research! We have tended to focus on pharma and the products/services they are developing for patients, but by broadening our view, we can include clothing designers, cosmetic companies, auto manufacturers, fitness apps, med-tech products, and so many others. We have just scratched the surface!
How does Rare Patient Voice build trust with patients?
We know many of our patients. We go out to patient health-focused events all over the country where we meet patients in person, share what types of research they can participate in, and provide them with an excellent experience when they do participate. Our Patient Advocacy Team is amazingly supportive and there to help whenever patients have questions. In addition, the Advocacy Team is connected to over 3,500 referral partners around the world who help us find more patients who would like to participate in research. Building organically through events and partners helps build trust, and doing what we say we will do is another part of that. Our project managers are supportive and help ensure a smooth experience when patients are involved in a study. One example of this is our project scheduler, who not only reminds patients of the time and date of their interviews but is also there to help patients find parking or negotiate challenging traffic if need be. Going above and beyond in all areas to provide excellent customer service to our patients really helps too!
What is Rare Patient Voice doing to educate on the importance of participating in medical studies?
Patients are the experts on their conditions, and we let them know that upfront. Nobody knows more about the day-to-day challenges of living with a rare or chronic condition. We want them to know that their participation is essential in the creation of new products and services. We also conduct several internal studies annually and share this data back with patients so they can see how their views are similar to or different from others in the community on topics such as clinical trials, working with advocacy groups, telehealth, and the journey to diagnosis.
What are some ways medical researchers can ensure caregivers are included when a patient enrolls in a research study?
Invite the caregiver to be part of the discussion from the beginning. Often they are intimately involved with patient care, and leaving them out of discussions is a big mistake. If researchers do not include the caregiver perspective at enrollment, retention will be nearly impossible.
How do partnerships with companies like Antidote help amplify the voice of the patient and caregiver in medical research?
Involving patients in all types of research is so important. Years ago, we asked doctors what patients thought or liked, and that did not always result in good decisions. Now patients want to be heard and included. Asking patients about a trial plan before it is implemented makes so much sense and will likely result in better participation. By including patients and caregivers in your studies, you will have a much broader understanding of their likes/dislikes/needs/wants, which will improve study design. If there are HCPs included in a project, make sure you include patients too!
