The Patient Inclusion Council provided direct feedback to the OR PDAB from patients and caregivers on the design and questions of the board’s proposed patient request for information form that will be utilized during the cost review process.
The feedback drew on the professional experience of Patient Research Partners to provide recommendations to enhance data collection efforts and collect meaningful data from those taking the drugs under review.
The recommendations in the letter include:
“Clarification regarding who should take this survey. We are uncertain why “the general public” is included in a section intended for data regarding personal experience with prescription drug use: “Questions for patients, caregivers, advocacy groups, and general public.” What value would the board gain from hearing experiences (or opinions) about prescription drug costs from anyone other than those who have utilized the drug? If the purpose is to also collect information from people who may have been prescribed the drug but were unable to obtain access, then this should be stated in place of “and general public.”
“Drug usage (timing). Will your data collection be limited to patients currently on the drug or will it include patients who have been on the drug in the past? If the latter, what is the time restriction for gathering data from those no longer on the drug? Due to a variety of contextual influencers (such as inflation related to drug costs, benefit design, COVID era, and a time when access to medications was tied to pre-existing conditions), understanding when the patient used the drug, or if they are currently using the drug, would be beneficial for analysis.“
“Confidentiality clarification. “Answers are not confidential and if received by this date, will be included in the board materials prepared for the affordability review and posted on the website.” Suggestion: Given providing personal information (i.e., name, contact information) is optional, clarify publicly available information does not include personal information and by providing personal information this is done only to reach out for clarification in answers.“