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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

  • Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
    • Awards
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • How We Use Your Information
    • Newsletters
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • Patient Journeys and Insights for Oncology and Rare Diseases
    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Set-up Options

Option 1: The Standard Process (Full Qualitative Programming)

The Process –

  • RPV will review the Screener, fully program and recruit our panelists (digitally).
  • RPV has an automatic Schedule Tool for those who qualify based on the Moderator’s Availability.
  • We prefer to have schedule blocks for recruiting assigned for RPV. See Added Costs for no RPV Blocked Times.
  • RPV will update you (the client) with all of the recruitment data (those who qualify and are scheduled, and all of those who don’t qualify and why) for review. We prefer to use our own Master Grid Template. See Added Costs for Client Grid.
  • RPV will send reminders to target panel to fill recruit.
  • RPV will process and ship rewards for Complete Interviews and invoice once the study is complete.

Things to Note –

  • Respondents get an initial Confirmation Email upon Scheduling, a 24-hour to-interview Reminder Email, and IF they opt-in to one or both, a 24-hour Text Message Reminder and/or 24-hour Automated Call Reminder.
  • RPV prefers to pay our own Completes.
  • RPV does not screen/recruit Client Lists.
  • RPV does not phone screen
  • If the recruit becomes difficult, we can add our Patient Advocacy Team (PAT) to the study where they will work with Referral Partners and post ads on Social Media to build the target panel who the PM will immediately invite. *We do not note the client’s name in any ads.
  • RPV can attach Homework, Consent Forms, Interview Instructions, Dial-in Info to the Confirmation/Reminder Emails.
  • Please note that for any additional pre-work (e.g., tech-checks, set-up calls, homework) honoraria will be adjusted accordingly.

Added Costs –

  • Client Master Grids: RPV prefers to use our own Grid Template. We can use the clients, but depending on the complexity, there may be a +$500 charge for this. *No charge applied if RPV uses our own Master Grid Template.
  • Google Doc Availability with no RPV block times: +$50 (per scheduled complete) if client cannot provide blocks of time for RPV recruitment.
  • Typing Tools: Average additional cost is +$500.
  • Referral Bonus: We can offer a referral bonus to respondents if they refer others who qualify and complete the research. The referral bonus is $125 which includes $100 to the referrer and a $25 administrative fee.
  • Additional Screeners: Cost may vary depending on length and complexity.
  • Reschedule Fees: +$50 (per reschedule) for anyone who must be rescheduled due to client/moderator change. *Does not apply if fault is on RPV or Respondent.
  • Scheduling Later: If RPV is requested to recruit, allow for client review, then schedule (where we cannot use our auto-Schedule Tool after screening), we will apply +$50 per scheduled Complete.
  • Homework (Pre/Post): +$25 (per Complete) for homework. *Example, if there is a 15-minute Pre AND Post work activity, that would be +$50 (per). If homework is 60-minutes or more, the additional charge will be +$125 (per).
  • Follow Ups Interviews: $125 per Follow Up Recruit for TDIs or WATIs, $225 per Follow Up Recruit for In-Person, FGs, or DYADs.
  • Client Recruit Cancellations: $25 reward (more than 24-hours to their interview) plus counted as additional recruit. Full Reward for those 24 hours or less to their interview, plus counted as additional recruit.
  • Clinical Trials: $225 per qualified recruit. +$500 if Consented to Clinical Trial.

 

Option 2: RPV Programmed Handover –

The Process –

  • RPV will request 4-5 key questions from the client’s Screener to program.
  • RPV will update you (the client) all recruitment data for those who pass the few key questions via our Master Grid Template.
  • Client is responsible for following up with potentials to fully screen and schedule.
  • Client will need to update RPV PM with where the recruitment is per Quotas.
  • RPV will send reminders to target panel to fill recruit.
  • Client will provide RPV PM with list of final completes and then RPV will process and ship rewards for Complete Interviews and invoice once the study is complete.

Things to Note –

  • *If you have a programmed Screener to finish screening the potentials, you MUST use Option 3: Client Programmed Handover. RPV Programmed Handover (Option 2) is only for clients that phone screen the potentials.
  • RPV does not phone screen
  • RPV will not use client Master Grid, we use our own Master Grid Template for RPV Programmed Handovers.
  • RPV PM will need client for contact info of the person/persons contacting the potentials so we can update the recruits with who to look out for with the next phase in screening/scheduling by client.
  • If client has trouble contacting RPV potentials, please contact RPV PM, we can follow up with the recruits.
  • IF Schedule Tool is added – Respondents get an initial Confirmation Email upon Scheduling, a 24-hour to-interview Reminder Email, and IF they opt-in to one or both, a 24-hour Text Message Reminder and/or 24-hour Automated Call Reminder.
  • IF Schedule Tool is added – RPV will send Consent Forms, Homework, etc., but client must follow up with recruits for anything pending.
  • RPV prefers to pay our own Completes.
  • RPV does not screen/recruit Client Lists.
  • If the recruit becomes difficult, we can add our Patient Advocacy Team (PAT) to the study where they will work with Referral Partners and post ads on Social Media to build the target panel who the PM will immediately invite. *We do not note the client’s name in any ads.
  • Manual Scheduling: Rare Patient Voice can manually schedule up to n=3 respondents. A programmed scheduling tool is required for n=4 or more respondents. In both cases, once we update your team with the scheduled respondents, your team will be responsible for following up with reminders, collecting materials (e.g., consent forms), and rescheduling.

Added Costs –

  • Added questions past 4-5 key questions: Cost may vary depending on the number of added and the complexity.
  • Schedule Tool: RPV can schedule those who the client confirms qualify (+$300).
    • IF Schedule Tool applies – Reschedule Fees: +$50 (per reschedule) for anyone who must be rescheduled due to client/moderator change. *Does not apply if fault is on RPV or Respondent.
    • IF Schedule Tool applies – Google Doc Availability with no RPV blocks: +$50 (per scheduled complete) if client cannot provide blocks of time for RPV recruitment.
    • IF Schedule Tool applies – Scheduling Tool with Sub Quotas: +$200 (Schedule Tool and Quotas added, $500 total).
  • Referral Bonus: We can offer a referral bonus to respondents if they refer others who qualify and complete the research. The referral bonus is $125 which includes $100 to the referrer and a $25 administrative fee.
  • Homework (Pre/Post): +$25 (per Complete) for homework. *Example, if there is a 15-minute Pre AND Post work activity, that would be +$50 (per). If homework is 60-minutes or more, the additional charge will be +$125 (per).
  • Follow Ups Interviews: $125 per Follow Up Recruit for TDIs or WATIs, $225 per Follow Up Recruit for In-Person, FGs, or DYADs.
  • Client Recruit Cancellations: $25 reward (more than 24-hours to their interview) plus counted as additional recruit. Full Reward for those 24 hours or less to their interview, plus counted as additional recruit.
  • Clinical Trials: $225 per qualified recruit. +$500 if Consented to Clinical Trial.

Option 3: Client Programmed Handover –

The Process –

  • For Clients with the Screener programmed on their end, RPV will send over our Redirects for Complete, Disqualified, and Over Quota Landing Pages for the client to implement.
  • RPV will test client Screener to ensure RPV Redirects are working properly and RPV Unique IDs are passed back to our Landing Pages.
  • RPV will invite target panel to client Screener for recruitment.
  • Client will update RPV PM with where the recruitment is per Quotas.
  • Client is in charge of Scheduling and Reminding recruits.
  • RPV will send reminders to target panel to fill recruit.
  • Client will provide RPV PM with list of final completes and then RPV will process and ship rewards for Complete Interviews and invoice once the study is complete.

Things to Note –

  • Client cannot invite RPVs recruits to sign up to their panel (or with another recruiter).
  • RPV prefers to pay our own Completes.
  • RPV does not screen/recruit Client Lists.
  • If the recruit becomes difficult, we can add our Patient Advocacy Team (PAT) to the study where they will work with Referral Partners and post ads on Social Media to build the target panel who the PM will immediately invite. *We do not note the client’s name in any ads.
  • If client has trouble contacting RPV potentials, please contact RPV PM, we can follow up with the recruits.

Added Costs –

  • Schedule Tool: RPV can schedule those who the client confirms qualify (+$300).
    • IF Schedule Tool applies – Reschedule Fees: +$50 (per reschedule) for anyone who must be rescheduled due to client/moderator change. *Does not apply if fault is on RPV or Respondent.
    • IF Schedule Tool applies – Google Doc Availability with no RPV blocks: +$50 (per scheduled complete) if client cannot provide blocks of time for RPV recruitment.
    • IF Schedule Tool applies – Scheduling Tool with Sub Quotas: +$200 (Schedule Tool and Quotas added, $500 total).
  • Referral Bonus: We can offer a referral bonus to respondents if they refer others who qualify and complete the research. The referral bonus is $125 which includes $100 to the referrer and a $25 administrative fee.
  • Homework (Pre/Post): +$25 (per Complete) for homework. *Example, if there is a 15-minute Pre AND Post work activity, that would be +$50 (per). If homework is 60-minutes or more, the additional charge will be +$125 (per).
  • Follow Ups Interviews: $125 per Follow Up Recruit for TDIs or WATIs, $225 per Follow Up Recruit for In-Person, FGs, or DYADs.
  • Client Recruit Cancellations: $25 reward (more than 24-hours to their interview) plus counted as additional recruit. Full Reward for those 24 hours or less to their interview, plus counted as additional recruit.
  • Clinical Trials: $225 per qualified recruit. +$500 if Consented to Clinical Trial.

Quantitative Studies –

The Process –

  • Clients will have the full Screener/Survey programmed on their end.
  • RPV will send over our Redirects for Complete, Disqualified, and Over Quota Landing Pages for the client to implement.
  • RPV will test client Screener to ensure RPV Redirects are working properly and RPV Unique IDs are passed back to our Landing Pages.
  • RPV will invite target panel to client Screener for recruitment.
    Client will update RPV PM with where the recruitment is per Quotas.
  • RPV will send reminders to target panel to fill recruit.
  • Client will provide RPV PM with list of final completes and then RPV will process and ship rewards for Complete Interviews and invoice once the study is complete.

Things to Note –

  • RPV does not program Quant Surveys, but we can direct you to our partner Company (Q One) who will.
    • Link to Survey Programming Cost Tool: https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/index.php?surveyID=6bb3h20ajpd9&version=22386&id=284174feb9940a
  • RPV Prefers to have our redirects implemented. If your programming team cannot implement them, we will (at least) need you to capture our Unique IDs.
  • Clients must have Quotas implemented to close down the recruit once the target number(s) are hit. Any Over Quotas respondents who complete the Survey will be paid for their time, but not counted as a recruit.
  • Client cannot invite RPVs recruits to sign up to their panel (or with another recruiter).
  • RPV prefers to pay our own Completes.
  • RPV does not screen/recruit Client Lists.
  • If the recruit becomes difficult, we can add our Patient Advocacy Team (PAT) to the study where they will work with Referral Partners and post ads on Social Media to build the target panel who the PM will immediately invite. *We do not note the client’s name in any ads.

Added Costs –

  • Additional Links: RPV Testing and implanting 1 Survey Link is included in the Setup Cost. Any additional Survey Link will be +$100 (per link) added to Setup.
    • Example – 1 Patient Link and 1 Caregiver Link = +$100 to Setup.
  • Facial Recognition/Recording: +$25 to respondent reward. If client disqualifies them after recording, respondent gets the $25 reward.
  • Follow Up Questions: If client needs to reach back out and ask a few follow up questions, $25 (per Complete Follow Up Recruit).

 

Latest Blog Posts

  • Weekly Warrior: Meet Kelsey
  • Need to raise funds for your org’s efforts? Join our referral program and let RPV help amplify your voice! 
  • Weekly Warrior: Meet Allie
  • Weekly Warrior: Meet Denise
  • A Thank You to Our Patients, Caregivers, and Patient Advocacy Group Partners

Check Out Our YouTube Channel!

https://youtu.be/cfjkqh5Ykp0
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