The MPE Patient Evidence workstream was established in 2020 as a way of generating evidence important to patients with myeloma and their families. It is about understanding unmet needs in the patient population and designing research questions which will support new understandings and knowledge. This workstream is collaborative and inclusive. MPE will partner with industry, academia, other patient organisations, and regulatory bodies where possible to understand more about what gaps exist within the myeloma landscape and how to best generate evidence on these. It develops projects with patients and families in mind. It works alongside MPE’s policy and access team to anticipate what questions need to be asked and what the data needs are for upcoming medicines approval processes.
Patient-centric decision-making results in better transparency and accountability of medical product development and better outcomes for patients, improved quality of research and study outcomes more relevant to patients, more products developed in line with patients’ needs, and increasing overall well-being. The Patient Evidence workstream is about collecting, synthesising, and presenting patient data to policy makers who need to hear the realities of patient experience. MPE will identify knowledge gaps and collect the patient data needed to demonstrate the impact of myeloma (and related conditions) to policy makers, regulators and governments.