- Communication between patients, industry, government and doctors is essential for the evolution of healthcare personalization.
- It is important that healthcare professionals listen to patients’ priorities and make joint clinical decisions.
- Molecular, genetic and genomic data can be used to better define therapeutic strategies for cancer patients.
Last week, AmCham Belgium’s Personalized Healthcare Subcommittee – an initiative of our Innovative Healthcare Committee – began an event series on different aspects of personalized healthcare. For this first session, which focused on the evolution of healthcare personalization, we had the pleasure of welcoming Elke Stienissen, lymphoma patient and President of the LVV (Flanders’ Lymphoma Association), and Dr. Philippe Aftimos from the Institut Jules Bordet, who shared their views on the topic, as a patient and as an oncologist.
Elke, now three years in remission, explained how she was diagnosed with stage IV Hodgkin’s lymphoma in her early 30s and shared her journey through different treatment lines: immunotherapy, how she requested to look into a combination of chemotherapy with checkpoint inhibitors and finally a transplant.
Every patient is different, and different patients need different solutions.
- Elke Stienissen, lymphoma patient and President of the LVV
As a 30 year old, Elke valued preserving her work and social life, her self-esteem, her ability to participate in meaningful experiences and, overall, her quality of life. But every patient is different and may have different priorities.
This is why the communication between different healthcare actors and patients is so important and should be based on learning and listening. Doctors should be aware of their patients’ experiences and listen to their feedback – for example, when to stop a treatment and look for different options.
Elke called on healthcare companies to rely on patient experts more often and earlier, such as when creating communication campaigns. She also encouraged the government to count on patient experts to provide their input and improve the public decision-making processes in relation to new therapies and indications, quality of life assessments, etc.
Patient organizations and patient experts are important players in the healthcare environment. They push great initiatives forward, educate patients and provide support. As such, Elke asked both industry and the government to actively finance these organizations and remunerate their volunteer patient experts’ time and input according to fair market values.
Dr. Aftimos completed the session with his technical take on personalized healthcare. He provided an overview of the history of personalized healthcare and precision oncology, discussed how next generation sequencing greatly improved the available information and highlighted the importance of the human factor in translating this wealth of data into meaningful clinical action.
Personalized healthcare and precision-based oncology go hand in hand.
- Dr. Philippe Aftimos, Institut Jules Bordet
Precision-based oncology is built on the idea that molecular, genetic and genomic data can be used, in combination with other patient information, to predict outcomes and define the therapeutic strategy accordingly, not only regarding established treatments, but also when finding suitable clinical trials. However, access to vast amounts of data does not improve patient outcomes by itself.
As the complexity of pathology and genomic reports increases, so does the uncertainty when evaluating them. This is why Dr. Aftimos highlighted the importance of providing oncologists with clear guidelines and tools such as OncoKB and the Belgian National Molecular Tumor Board.
Not only can oncologists benefit from this information; pathologists, molecular biologists, geneticists and clinical trial managers also have the potential to leverage genomic data to improve patient outcomes.
To leverage the incredible potential of precision-based oncology and personalized healthcare, it is important to make genetic counseling a standard clinical practice, homogenize the interpretation of data, being able to appropriately contextualize genomic data in terms of type of tumor, type of cancer, etc., and facilitate the mobility of patients.
That’s our ultimate goal: improve the outcomes for patients, their quality of life and duration of life.
- Dr. Philippe Aftimos, Institut Jules Bordet
Stay tuned for the second webinar in our Personalized Healthcare event series taking place on March 17! More information coming soon.
About the author
Always curious and passionate about science and economics. Unlocking the use of data for the benefit of patients.