What's New at Rare Patient Voice?
Study Results
Patients play an important role in research, but many are still hesitant to participate in clinical trials. In September, RPV surveyed almost 2,000 patients and family caregivers on what would make taking part in a clinical trial more appealing to them. One highlight from the survey results that was discussed earlier this month in a webinar hosted by the Center for Information & Study on Clinical Research Participation (CISCRP) is the importance of communication. Patients want to be fully informed about the trial and its goals prior to taking part, and also want to receive study results afterwards.
Other aspects of communication that patients and family caregivers noted as desirable included:
- Getting an understanding of the treatment under development
- Having a 24/7 contact for emergencies or concerns relating to the trial
- Having a communication app or platform to use during the trial
- Being able to be in contact with other people in the trial
We Value Your Time
We appreciate your participation and being part of the RPV community, even if you don't qualify for a particular study. Each month we will automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. The randomly chosen winner will be notified via email. Congratulations to our latest winner, Nicole!
Share Your Voice and Receive a Rarity!
If you’re part of the RPV community and enjoy participating in research studies, let us know! Check out videos from the growing group of patients and caregivers who have recorded videos about their Rare Patient Voice experience: https://rarepatientvoice.com#sharevoice. To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card! Follow these steps to record and submit your own video!
Step 1: Scan with code below with the camera app from your
Apple/Android mobile device or click the link below!
https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
Partner Corner
HealthHIV is a national non-profit working with healthcare organizations, communities, and providers to advance effective HIV and HCV prevention, care, and support through education and training, technical assistance and capacity building, advocacy, communications, and health services research
and evaluation.
HealthHIV leads the HealthHCV initiative (HealthHCV.org), the National Coalition for LGBTQ Health (HealthLGBTQ.org), the National Center for Health Care Capacity Building (HealthCBA.org), and the National Resource Center for Care Coordination and Pozitively Aging with HIV (AgingWithHIV.org).
In HIV prevention, we offer the HealthHIV HIV Prevention Certified Provider (HIVPCP) Certification Program™, the only certification program of the HIV prevention workforce, available at HIVPCPcertification.org. We also administer PleasePrEPme.org, an extensive online repository of PrEP navigation curriculum and training resources for providers tailored to all 50 states, as well as sex-positive HIV prevention resources and live bilingual chat services for patients.
For more information and resources, visit HealthHIV.org.
Referrals?
Would you like to refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Staff Spotlight
Get to know our team! Each month we will feature one RPV staff member. This month, Kirk Munsch, Patient Advocacy Manager, is in the spotlight.
A move and a chance email lead to a momentous opportunity for both Kirk Munsch and Rare Patient Voice several years ago. A Multiple Sclerosis patient himself, Kirk and his wife were familiar with the company, having participated in its patient and caregiver surveys. As he tells it, “After we moved to Colorado, I sent an email to RPV to change my mailing address. Wes Michael (RPV’s president) answered it immediately, and he and I then started a conversation that went from changing my address to working a patient recruitment event in Denver the next weekend. My position in the company evolved from there.”
A passionate patient advocate who can categorically relate to those who have RPV process questions and privacy concerns, Kirk is highly qualified to provide the “yes, you really can get paid for your opinion” answer to questions from patients and caregivers. He loves to attend support group meetings and education events, and to explore venues outside of the norm (including fitness facilities, church functions, and non-medical/disability specific health fairs) to spread the RPV message. In fact, he keeps a folding table in the trunk of his car just for such occasions!
When not recruiting for RPV, Kirk enjoys fantasy golf and football, surfing the web, cycling, and working out. He also considers himself an extreme weather veteran, having experienced tornadoes, hurricanes, and an earthquake!
Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.
How will I be paid?
You will earn $100 per hour for participating in studies. We pay by check to ensure patients can use their compensation in any way they wish.
About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients over $10 million dollars since 2013 for participating in research studies.
