Q&A with Rare Patient Voice

Q&A with Rare Patient Voice

Rare Patient Voice (RPV) provides patients and caregivers with rare and non-rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services. Wes Michael, president and founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses, and advocacy leaders. Michael has more than 40 years experience in marketing research, and more than 20 years in healthcare marketing research. While RPV started by focusing on rare diseases, it now welcomes patients and caregivers with all medical conditions.

Med Ad News: How are companies/brands overcoming the challenges of reaching rare disease audiences during the COVID-19 pandemic and Omicron surge?

RPV: The good news is that COVID has not stopped companies or brands from hearing from patients. Only the methods of hearing have changed. And even for those, the rarer the disease, the more often a remote approach was used, so that didn’t change during COVID. We’ve found the rare disease audiences to be even more willing to share their voice during COVID, as it has affected them the most.

Med Ad News: In recent surveys and interviews to improve medical products and services, what are some of the most common opinions being voiced by patients and caregivers?

RPV: This is difficult to answer since we don’t see the results of the research, we don’t hear the interviews or see the survey results. But we can say that patients are thrilled to be asked their opinion, they have strong opinions about the treatments and devices and want them to be improved even if it won’t help them, as they feel it will help those who come after.

Med Ad News: Rare Patient Voice has traditionally taken an active approach to meet patients at conferences and events. How has this approach transformed within the COVID pandemic environment?

RPV: The world has not looked the same since March of 2020, and unfortunately we have not been able to meet people at in-person meetings, walks, conferences, and other live events in the way we had previously. But that has not deterred us from growing our patient and caregiver panel. Our Patient Outreach team works with patient advocacy and support groups through a robust referral program in which those groups publicize signing up with RPV to their members. Through use of a unique link, the advocacy group receives a referral bonus for every member who uses it in signing up with RPV. This has proved a win-win for us and our over 2,200 referral program partners.

Med Ad News: How is RPV’s partnership with Clinakos creating value for patients and life sciences companies?

RPV: There are major benefits in having a 360-degree view of a patient’s healthcare journey, particularly in terms of research and progress in the development of new treatments and cures. Together with Clinakos, the leader in linked patient-level data and insights, we have launched a collaboration designed to combine the patient voice with actual patient data. Now, insights from patient interviews and surveys can be combined with each patient’s medical and behavioral profile to provide a complete and accurate picture of the patient journey. This innovative partnership brings Clinakos’ intelligent connected cloud platform with medically smart AI technology together with RPV’s panel of oncology and rare disease patients, providing great potential on the research front for patients and life sciences companies.

Med Ad News: Please discuss the recent milestone reached by RPV and what management is anticipating for the market research patient recruitment firm  in 2022 and beyond?

RPV: When Wes Michael launched Rare Patient Voice in 2013, he did so to provide patients and caregivers with a forum for sharing their opinions, and for clients to connect with the participants needed for their research studies. In the almost nine years since, the company has grown to include a panel of over 100k and expanded from the US to Canada, the UK, France, Germany, Italy, and Spain. We value the time and input of our patients and caregivers. Recently, we reached a new milestone of paying over $8 million to patients and caregivers for participating in research studies.

In 2022, our focus is on continued expansion in the EU as well as here in North America. Specifically, our aim is to grow our panel by 50 percent and welcome 100 new clients.

Med Ad News: How did RPV come up with the zebra mascot named Rarity?

RPV: Our team kept pushing that we needed a mascot, and we decided since the zebra is the symbol of rare diseases that would be a perfect mascot. Turns out all the “Z” names for zebras are taken (there are any number of books or movies about Zack, Zelda, Zoey, etc. the Zebra.) We ran a contest on social media and had great participation. The name Rarity won, followed closely by Hope. And we were fortunate to have Rarity drawn by Wes’s nephew, who is a professional illustrator.