W-18: Putting the Patient at the Center of Medical Information – A Patient-centric Standard Response Letter Initiative
Poster Presenter
Chelsea Aiudi
Director, Medical Information
Kiniksa Pharmaceuticals United States
Objectives
TESARO identified the most common unsolicited requests received from patients by the medical information (MI) call center and developed standard response letters (SRLs) to fill the unmet need for patient-centric MI materials.
Method
This retrospective analysis of call center inquiries on a marketed ovarian cancer product identified common topics and the percentage of MI requests received from patients/caregivers. We developed SRLs, reviewed by medical, legal, and a patient panel, to answer the most frequently asked questions.
Results
Of the 3254 MI requests received by the United States (US) call center from March 2017 through July 2018, 21% (n=700) were from patients, falling second to health care professionals. The most common topics of patient inquiry were availability (16%; n=114), safety (12%; n=86), miscellaneous (12%; n=82), efficacy (11%; n=76), patient assistance (8%; n=55), and administration (7%; n=50). Based on the most frequently asked questions identified through analysis of call center metrics, we identified 9 topics for development into SRLs. MI created an SRL template based on best practices identified in the literature. The following features were incorporated into each SRL: info-graphics, headings phrased in question format, and a glossary to explain difficult medical terms. A Flesch-Kincaid grade level assessment was performed on each SRL to assess readability. The average US resident reads at an 8th-grade level (Stossel et al, J Gen Intern Med. 2012). The 9 SRLs had an average grade level of 10th grade. We created a unique workflow for reviewing the patient-centric SRLs; each letter was first reviewed by medical and legal, then sent to a patient panel of 18 ovarian cancer patients/survivors. We provided the patient panel with a template that requested feedback on specific areas such as format and design, language, and content. Since the readability was above the recommended grade level for patient materials, we asked our patient panel to assess real-world readability and identify any difficult words. Key updates that we made based on panel feedback included increasing font size, removing the term “grade” to describe adverse event severity, and adding context to progression-free survival figures. After SRLs were updated based on panel feedback, medical and legal reviewed and provided final approval. Once approved, patient-centric SRLs were sent to the call center to be distributed in response to unsolicited requests.
Conclusion
The development of patient-centric SRLs provides additional information to patients who seek to partner with their health care provider in making health care decisions. The feedback from our patient panel reinforces the need for patient-facing materials, especially in the ovarian cancer community. One patient remarked, “The information is not only appropriate and useful but necessary. It aids in showing the patient why this [drug] may work for them.” Importantly, the patient-centric SRLs are visually eye-catching and present the information using info-graphics and patient-friendly language to engage the reader and increase comprehension. Our patient panel complimented the SRLs, with one patient saying “I am in a clinical trial and familiar with drug material. This is the best representation available.” Of the 60 patient MI requests received by the US call center since this initiative launched (December 2018 through January 2019), 25% (15/60) were answered with a patient-centric SRL. This initiative is ongoing, and we will continue to collect call center metrics to track utilization of the patient-centric SRLs. In addition, increasing patients’ comprehension of their medication may increase adherence, sustain efficacy, and limit adverse events. The cost of non-adherence to the health care system is significant, with an estimated loss of $77–330 billion per year in the US (PricewaterhouseCoopers. Pharma 2020. 2007).
