The MPE Evidence Generation Unit (EGU) was established in 2020 as a way of generating evidence important to patients with myeloma and their families. It is about understanding unmet need in the patient population and designing research questions which will support new understandings and knowledge. The EGU 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. The EGU will develop projects with patients and families in mind. It will work 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 Evidence Generation Unit (EGU) is about collecting, synthesising, and presenting patient data to policy makers who need to hear the realities of patient experience. The EGU will identify knowledge gaps and collect the patient data needed to demonstrate the impact of myeloma (and related conditions) to policy makers, regulators, and government.
The EGU will prioritise the following research areas:
- Myeloma patient preferences (including for example preferences for treatment administration) to aid decision making
- Shared Decision Making
- Caregiver and family impact in myeloma
- PRO use across Europe – across trials / clinical practice
- European palliative care provision in Europe
- Issues for younger/ working age patients with myeloma
- Patient friendly data collection methods
Please get in touch at email@example.com if you have a research project you would like to discuss or any questions about the EGU. We are interested in hearing your views and in future research collaborations.
- What is important to people living with myeloma in Europe after the first line of treatment?
- The perspectives of myeloma patients and health care professionals on Minimal Residual Disease (MRD)
- Shared decision making in myeloma – what do health care professionals working in myeloma need to know, from a patient perspective?