What's New at Rare Patient Voice?
Study Results
It’s been a long two years, with COVID19 impacting life as we know it in ways large and small. Patients and caregivers have certainly been affected, and Rare Patient Voice has surveyed them on what that has been like, first in July 2020 and then in February 2022. One factor that has emerged as a positive has been the rise of telehealth. Recently, RPV’s President Wes Michael gave a presentation at the 2022 Human Factors and Ergonomics Symposium in New Orleans, LA, “Patient Perceptions of Telehealth - Early COVID to Now,” based on those two studies. The following are some key takeaways from Wes’s presentation.
Overall, most patients who had telehealth visits reported being pleased with the experience.
Telehealth was perceived as safer than medical office visits.
But telehealth also has its pitfalls and is not a substitute for all in-person visits.
In conclusion:
- A majority of our patients have used telehealth and they give it good ratings.
- In-person visits are still the gold standard, and are required for many appointments.
- Convenience is a chief draw for telehealth – unrelated to Covid.
- In-person visits create pain and stress for many patients.
- Patients want to have access to telehealth after Covid.
- Many patients crave the personal attention they get from in-person visits.
Record a Video, Receive Rarity!
Help us spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As thanks 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! Congratulations to Shelby of OK, our winner for March!
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!
New on the Bookshelf
This month, RPV’s Wes Michael reviews a new children’s book, Life’s a Polyp, which centers on life with Familial Adenomatous Polyposis (FAP).
Life’s a Polyp with Zeke and Katie
Written by Jenny Jones, Illustrated by Sadie Peers
Zeke was a normal little boy living a normal little boy’s life when things began changing for the worse. “Life’s a Polyp” takes us through the downs and ups of Zeke’s story. It explains Familial Adenomatous Polyposis (FAP) and its implications, which if untreated will cause cancer. Zeke has a lot of treatments to endure, but fortunately he meets a little girl, Katie, who has also gone through it. Zeke learns he also needs mental health counseling to live with FAP, and that there are even special camps for kids with diseases like FAP.
“Life’s a Polyp” is lovingly written by FAP advocate Jenny Jones, with inviting color illustrations by Sadie Peers. It does not shy away from confronting the disease and its symptoms directly. What a great contribution to help families and especially kids deal with such a troublesome condition. Jenny was diagnosed with FAP and Short Bowel Syndrome as a child and she has taken from her experience to help others with those conditions.
The book also includes many online sources of information on FAP, as well as helpful definitions. A portion of the profits from the sales of the book will be donated to the National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund.
–Wes Michael, Rare Patient Voice
Partner Corner
Ronald McDonald House Charities of Central Florida (RMHCCF) finds, creates, and supports programs that directly improve the health and well-being of children and families. Before the Ronald McDonald House program was established in Orlando, families were sleeping in chairs in hospital waiting rooms or in their cars, and eating out of vending machines to be close to their children who were undergoing life-saving treatment at area hospitals. RMHCCF now operates houses on the campuses of Orlando's three pediatric hospitals making Orlando just the sixth city to have three or more Ronald McDonald Houses. Today, we operate the three Houses with a total of 84 bedrooms—23 bedrooms at AdventHealth for Children, 37 bedrooms at Arnold Palmer Hospital for Children, and 24 bedrooms at Nemours Children's Health, serving thousands of families annually and saving them over $3.35 million in costs. Since 1996, our mission has grown to serve more than 35,000 families. The families who have stayed at the Houses have represented 68 countries and all 50 states. Approximately 50% of our families are from the nine-county Central Florida area.
Our cornerstone program, the Ronald McDonald House, provides a home away from home for families with children receiving treatment at hospitals and medical facilities in Orlando. When a child is seriously ill, families face extensive medical treatment, hectic schedules, and financial burdens. RMHCCF allows families to stay just steps away from their children in the hospital. Each family has a private room and access to a fully equipped kitchen, a well-stocked pantry, and an immediate support system of other families, staff and volunteers. These benefits are not lost on our families. “It made us very relaxed knowing one of us could always be with Melody and one with Sofia. The most important thing was how much it helped keep our family together. It really is a home away from home.”
To learn more about Ronald McDonald House Charities of Central Florida, please visit https://www.rmhccf.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
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.
