What's New at Rare Patient Voice?
Study Results
Recently, Rare Patient Voice partnered with MediFind, an advanced digital health platform helping people facing complex health challenges find care, and surveyed 1,229 members of the RPV community on the current journey to diagnosis and care. The resulting report, "The Long and Winding Road to Care'' which can be downloaded here, shows progress being made for patients, but unevenly across disease types and other demographics. Key takeaways include:
The diagnostic journey continues to vary
- Patients with rare diseases took longer to be correctly diagnosed: only 23% were diagnosed within three months, while it took five or more years for 28% of patients. For patients with cancer, two-thirds were diagnosed within three months, and only 1% took five or more years to be properly diagnosed.
- On average, patients report seeing four different doctors before getting correctly diagnosed. This number jumps to almost six different doctors when the patient has a rare disease.
Genetic testing is shortening time-to-diagnosis, but progress is uneven
- Genetic testing has become particularly prevalent for patients with cancer as 75% of patients diagnosed with cancer over the last two years have been genetically tested.
- Surprisingly, genetic testing is not a mainstay of rare disease diagnosis, with only 20% of patients diagnosed with a rare disease in the past two years reporting that they received genetic testing.
Clinical expertise drives specialist choice
- 55% of rare disease patients say clinical expertise is the most important factor when choosing their doctor, as opposed to 47% of complex disease patients.
- 88% of primary care doctors say medical skill is of great importance when selecting to whom they will refer patients, although how doctors practically evaluate such skill remains unclear.
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 a 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!
New on the Bookshelf
Partner Corner
LUNGevity Foundation is the nation’s leading lung cancer organization focused on improving outcomes for people with lung cancer through research, education, policy initiatives, and support and engagement for patients, survivors, and caregivers. LUNGevity seeks to make an immediate impact on quality of life and survivorship for everyone touched by the disease—while promoting health equity by addressing disparities throughout the care continuum. LUNGevity works tirelessly to advance research into early detection and more effective treatments, provide information and educational tools to empower patients and their caregivers, promote impactful public policy initiatives, and amplify the patient voice through research and engagement. The organization provides an active community for patients and survivors—and those who help them live longer and better lives.
One of the foundation’s activities to amplify the patient voice is project PEER: Understanding the lung cancer Patient ExperiEnce in the Real-world setting. PEER is an international study, open to any adult participant with lung cancer or caregiver who can read and respond to questions in English. Individuals must be 18 years of age or older and can access and use a device with a web browser that connects to the internet.
Via online surveys, we ask questions about your background, overall health, lung cancer diagnosis, treatment history, treatment satisfaction, physical well-being, and emotional quality of life. You would be asked to complete, at sign up, an initial longer survey (30-40 minutes) and then short (7-12 minute) monthly surveys for one year. You will be compensated for your time.
Why does Project PEER want my data?
Patient-reported data is a powerful source of real-world data. It can complement clinician-reported data and electronic health records data to identify treatment patterns. This is important because
- Only 3%-5% patients participate in clinical trials, so reliance on clinical trials as the only source of patient experience is incomplete
- Clinical trials exclude real-world patients with brain metastasis, prior cancers, and poor performance status
- Patients in the real world undergo treatment based on non-clinical factors such as access and availability
To join PEER visit www.studylc2.empiramed.org or email ProjectPEER@lungevity.org if questions. To learn more about LUNGevity Foundation visit www.LUNGevity.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 $8 million dollars since 2013 for participating in research studies.
