For many years, patient involvement in research was restricted to participating in clinical studies and trials as research subjects. Today, it is widely recognised that patients can and should be much more involved in all aspects of research, including agenda setting, study design, communication, and ethics. At the same time, many researchers are now well aware that patients bring unique knowledge and skills to projects which can help to improve the quality of research. However, there are still too many projects and initiatives where patients are either not involved at all, or where their involvement comes too late to allow them to really influence the project's direction and outcomes.
Read about the HARMONY Patient Cluster here >
The Innovative Medicines Initiative (IMI) considers patients equal partners that can and should play an active role in the medicines R&D process. Including patients’ perspectives in IMI activities and facilitating patient participation in projects is therefore a top IMI priority. As of the end of 2020, 60 % of IMI2 projects involved patient organisations as consortium partners, members of advisory boards, ethics boards or members of stakeholder groups. IMI projects are developing resources and showcasing best practice when it comes to the question of how and when to best involve patients in research. Read more >
More information about the IMI event of 7 October 2021>
The HARMONY Alliance, the HARMONY and HARMONY PLUS projects, are funded by IMI.
"HARMONY helps improve the prognosis and outcome of patients with hematological cancers, driven by knowledge derived from the combination and analysis of complex data. This will only make a difference to real patients if the evidence, findings and outcomes of the project are meaningful and relevant to patients, next to other stakeholders. Through its Stakeholder Forum, HARMONY will collect input from patient organisations and all other stakeholders to discuss needs, gaps, opportunities and barriers, informing the implementation of the project across work packages."
Jan Geissler, Founder and CEO, LeukaNET
HARMONY WP Leader Payers/Providers/HTAs, EMA Alignment and Optimization
#BigDataforbloodcancer | Big Data accelerate better and faster treatment for Patients with Hematologic Malignancies
The HARMONY Alliance is a European Public–Private Partnership for Big Data in Hematology that is capturing and mining Big Data on Hematologic Malignancies. Both projects of the HARMONY Alliance, HARMONY and HARMONY PLUS, are funded by the Innovatie Medicines Initiative (IMI).
HARMONY unites more than 100 organizations such as European medical associations, hospitals, research institutes, patient organizations, pharmaceutical and IT companies. HARMONY uses Big Data analytics to accelerate the development of more effective treatments for blood cancer patients. Data are stored in HARMONY’s Big Data Platform, which has already identified over 80,000 anonymized patient records, making it one of the largest databases of its kind. Leading research teams are currently using this wealth of information to answer critical questions about hematologic malignancies that cannot be addressed with other methods.
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