Objectives of the Workshop were to brainstorm, exchange and generate ideas regarding a list of outcomes relevant for all stakeholders; as well as to initiate a list of outcomes by haematological malignancy and a list of standard core outcomes valid for all haematological malignancy valued by all stakeholders participating in the workshop, for later validation.
Aliki Taylor, Director Global Outcomes Research, hosted the London workshop. The workshop was a result of several months of planning with leaders from Work Package 2 and Work Package 6, focusing on outcome measures that represent the needs of key stakeholders including clinicians, patient groups, HTA bodies, payers and regulatory bodies. The aim of the workshop was to bring together for the first time these different stakeholders into a workshop to brainstorm and generates ideas related to outcome measures and to begin to develop core outcomes sets for each hematological malignancy.
Professor Lars Bullinger and Mr Jan Geissler opened the meeting, focusing on outcomes measures from the perspective of clinicians and patients. Invited speakers included Professor Paula Williamson, University of Liverpool, who presented learnings from the COMET initiative and Professor Sam Salek, University of Hertfordshire, who presented key outcomes from the patients’ perspective on development of a patient reported outcome measure specific to hematological malignancies. Other presentations were from Dr Katy Harrison from NICE, UK and Dr Simone Werner from Bayer, Germany.
Amongst the attendees at the November workshop were several key opinion leaders and six European lead patient advocates including Jan Geissler, founder and head of Patvocates and other EU patient advocacy leads representing multiple myeloma, acute lymphocytic leukemia, chronic lymphocytic leukemia, myelodysplatic syndrome, and pediatric hematological malignancies. The workshop was very successful and had excellent feedback from attendees. The participants split into groups to discuss relevant core outcome sets for different hematological malignancies for the first time and engage across stakeholder groups. It was clear that going forward, within HARMONY, we will need to include more patient groups alongside other key stakeholders in the development of outcome measurements.
As a result of the November workshop, several steps were outlined for each hematological malignancy group who plan their next face to face meetings at the European Hematological Association (EHA) meeting in Stockholm in June 2018. Before then several meetings will be going ahead within disease area groups to continue the work on core outcome sets started at this workshop in London.
Patients diagnosed with hematologic malignancies need help: by using big data and working with multiple stakeholders, HARMONY aims to address urgent unmet needs of patients. With big data there is potential to identify novel pathways for drug development, facilitate drug development and accelerate the “bench-to-bedside” process. HARMONY can ultimately empower clinicians, policy makers and payers to improve decision-making and optimize care for patients with hematological malignancies. Would you like to be kept informed? Subscribe to our mailing list.