Focus on knowledge creation

Without ideas there is nothing to manage

Source: HARMONY Alliance website

Despite the many advances in medicine, healthcare’s Achilles’ heel remains a one-size-fits-all model that often overlooks the patient’s perspective. Data collected directly from patients in real-world settings and analyzed by AI has the potential to become the loudest voice in research.

In this blog the HARMONY Patient Cluster leads share their perspectives. This blog is published on the 2nd Big Data for Blood Cancer Awareness Day, at the end of Blood Cancer Awareness Month.

What patients face in their daily lives does not always reach scientists working in laboratories. These include not only the outcomes of the treatments captured precisely where the therapies are applied but also individual experiences, side effects of medications and their impact on quality of life, compliance, and unmet needs. Besides all of this, the same pill or therapy can be applied to different patients who do not fit the study cohorts: young and older individuals, with exacerbated symptoms or a mild course of disease, with comorbidities or living in different environments.

What has been missing is a feedback loop between patients and scientists, close cooperation beyond the classical randomized clinical trials. It has been changing recently with the rise of technologies like Big Data, artificial intelligence algorithms, and wearable technologies that are able to collect a wide range of data. Patient Reported Outcomes (PRO) allows for more granular insights into objective, measurable patient experiences along the course of the treatment. The new bridge between individuals and science built on data gives the patients a stronger voice and enhances their advocacy.

According to the Lancet Haematology paper Improving outcomes through patient-generated evidence – the next step in patient advocacy, there are meaningful datasets that patients can generate: data on treatment adherence, inequalities in access to diagnostics or therapies, current treatment patterns, quality of life, the burden of disease, the impact of illness on society, disease-related outcomes, and patient preferences on the risks and benefits. Download the paper in PDF here >

Jan Geissler, LeukaNET, HARMONY Partner and author of the Lancet Haematology paper: “We are talking about reliable data that captures patients’ daily lived experiences and should unquestionably become a part of modern evidence generation”.

The HARMONY Alliance amplifies patient voice in research

HARMONY recognized this from the beginning of the project, setting new standards for patient involvement in big data research and bringing patient involvement in biomedical research to the next level. It started with including the alliances of the patient organizations of the nine hematologic malignancies covered by the HARMONY Alliance. Thanks to the Patient Cluster, blood cancer patients are involved in the development, submission, conduct and analysis of research proposals.

“By representing the patient perspective, the Patient Cluster can enrich research and development (R&D) through prioritizing core outcomes, matching the patients’ true unmet needs, communicating research projects and results to the patient communities in an understandable way,” according to Tamás Bereczky, LeukaNET, HARMONY Partner.

The evidence shows this can lead to better outcomes and healthier cooperation across the entire research and development continuum. “HARMONY gives patients the opportunity to drive research toward their own interests and answer their own questions,” remarks Eglys Gonzalez, LeukaNET, HARMONY Partner and working on strengthening the scientific profile of the patient community in the HARMONY Alliance. Gonzalez adds: “Within the HARMONY Alliance the role of the patients is related to their involvement in the processes of research proposals, representing the patient perspective along every step of the project, among others.”.

Read full here.