What is HONEUR?
HONEUR stands for Haematology Outcomes Network in Europe.
Historically, the network of data centres across Europe has often been duplicative and uncoordinated, so the transformational potential of Real World Data is not being maximised. For example, in rare diseases like Multiple Myeloma, there is a lack of detailed, objective knowledge on routine clinical practice, treatment patterns and outcomes indifferent patient subgroups at different stages of the disease.
This led Janssen to create HONEUR - a collaboration project to form a network of participating centres (university and private hospitals, registries, medical societies and all other institutions that have a large data set of patients being diagnosed with haematological malignancies). Several benefits for the data centers and society are associated with HONEUR.
By working together, HONEUR’s overarching goal is to accelerate the development of new cancer treatments and ultimately to improve patient outcomes. Further information is given in our mission and vision.
Real World Data and Real World Evidence – What’s the difference?
Real World Data (RWD) is health data, usually created by healthcare professionals and also by patients, as part of routine health care and not as part of a research study. It is usually held in hospital and GP electronic health record systems, and by patients in personal health records and various apps. When Real World Data are analysed as part of research, the new evidence (knowledge) generated from this is called Real World Evidence (RWE).
Real World Data is critically important
RWD is very different from data gathered in clinical trials. In clinical trials, strict basic conditions are applied to allow for the best comparability between patient groups and to avoid any risk. Therefore, patients with certain comorbidities are often excluded to minimize safety risks. When the results of clinical trials are positive, these patients may very well receive those treatments after health authority approval. Because the real-world looks different than clinical trials, it is important to gather this data as well.
Additionally, RWD contributes to identifying situations in which effective treatments are not yet available (unmet needs) and offers information about the long-term safety of each form of treatment in use. RWE derived from RWD may sometimes highlight topics needing a more extensive clinical research study.
RWE in practice
Sweden – Since 1998, Sweden's national Cataract Registry has collected nationwide data on postoperative endophthalmitis (PE), which, although rare, results in blindness in between 30 and 50 per cent of patients. The Registry enables the identification of specific risk factors, which has contributed to a decline in PE from 0.11 per cent of all cataract surgery cases in 1998, to 0.02 per cent in 2009.
The Netherlands – In the Netherlands, healthcare professionals have helped to develop the outcome indicators for registries of quality and outcome data. In exchange for reported data, hospitals are provided with a weekly dashboard to help identify best practice and how outcomes can be improved. Outcomes have included a ~30 per cent decrease in mortality after resection in colorectal cancers between 2010 and 2012.
Germany – Since 2006, Gesundes Kinzigtal (GK) has been contractually accountable for the whole health care service budget for ~50 per cent of the 69.000 people in the town of Hausach. Through targeted planning, which incorporates a focus on prevention and wellness, and continuous evaluation, GK has reduced the per person healthcare cost by €151 and reduced the mortality rate by 53 per cent.
ITEM CODE: CP-73766 | DATE OF PREPARATION: FEBRUARY 2019