In recent years, the international medical community has begun reassessing and placing greater emphasis on patients’ medication experience, or real world evidence in academic terms, as an alternative source to gather feedback from patients participating in non-clinical studies.

At present, there are two options for patients to share their user experience. One of the options is to serve as a patient representative at the Pharmaceutical Benefit and Reimbursement Standard (PBRS) meeting. HOPE Foundation for Cancer Care has had the honor of serving as one of the patient representatives from 2021 to 2022, however, during the time the foundation’s participation was limited and was not allowed to speak in the PBRS meetings unless called upon. The second option is to provide feedback on an official new drug and patient experience platform established by the National Health Insurance Administration (NHIA) in 2016. The NHIA regularly adds new drugs and medical devices for the public to submit their user experiences. Since the platform was introduced, HOPE has regularly invited eligible patients to submit their feedback. In the past five years, HOPE has collected almost one thousand patient experiences entries.

The foundation hopes the NHIA and relevant agencies will continue to raise awareness of the platform as well as improving its credibility. It is hope that through expanded promotion by health care providers, accessible and guided questionnaires, more patients will provide feedback on their medication experiences.

The foundation is very willing to assist in the collection and compilation of patients’ accounts so that quality of life will become an important criteria for new drug review, while also helping the NHI in achieving its goal of implementing a patient-centric approach.

[2021-7-19/ United Daily News]