ALAN reports back on ESMO congress 2021

September 20, 2021

The Acute Leukemia Advocates Network (ALAN) attended the European Society for Medical Oncology (ESMO) congress which took place virtually from 16th to 20th September 2021.

ESMO is the leading professional organisation for medical oncology. With more than 25,000 members representing oncology professionals from over 160 countries worldwide, ESMO is the society of reference for oncology education and information.

ESMO’s core mission is to improve the quality of cancer care, from prevention and diagnosis all the way to palliative care and patient follow-up. It is to educate – doctors, cancer patients and the general public – on the best practices and latest advances in oncology. And it is to promote equal access to optimal cancer care for all patients.

Patient Advocacy sessions topics and discussions

Burden of cancer – Financial toxicity – Right to be forgotten

Cancer care costs depend on many factors such as country of living, type of cancer, insurance, age etc. Usually those costs are increasing during treatment and this financial toxicity has an effect on treatment discontinuation and on families as a whole.  

Cancer is no longer a death sentence, however an history of cancer can be a burden in every days’ life for patients and their families. 

  • Physical / medical (e.g. pain, fatigue, memory problems, infertility, secondary malignancies, neuromuscular impairment, cardiovascular, pulmonary and renal diseases, etc.)
  • Psychosocial (e.g. depression, anxiety, uncertainty, isolation, affected body image, etc.)
  • Societal (e.g. changes in interpersonal relationships, concerns regarding health or life insurance, job lock/loss, mortage, return to school, financial burden, stigmas, etc.)


The society in general needs to start thinking “life after cancer” – Isabelle Lebrocquy


In Europe, 4 members states (Belgium, Luxembourg, Netherlands and France) have implemented the right to be forgotten. Since May 2021, Portugal started process to implement it also and should be endorsed in 2022.

  • A past history of cancer cannot be collected and taken into consideration to assess a request to financial instruments and cannot be requested by insurers and bankers after:
    • 10 years for former adult cancer patient
    • 5 years for children (18-21 years old)
  • The Right to be Forgotten represents an opportunity to set up a more ambitious policy strategy on cancer survivorship based on a holistic approach of patients’ rights.
  • Provisions are different depending on the country

  • Proposals have been made to the EU – and the implementation in EU could be made based on existing provisions in the 4 member states. 

Constant and reciprocal dialogue between researchers, medical doctors, patients, private sector and policy makers is key. It has a pivotal role to ensure that progress made by medical science is taken into consideration by the society.


How can technology & data can support the cancer patient journey?

The importance of patient involvement in designing patient-centric clinical trials

What is a patient-centric clinical trial ? A trial that benefit BOTH the patients who are ON the trial as well as those who are NOT on the trial – Gilliosa Spurrier-Bernard


Every one can learn about good research design through EUPATI, WECAN and other national forums. Informed patients can impact the feasibility of a clinical trial ! 

Efficient involvement of patient experts

Patient experts and advocates are involved in trial design – LOOK OUT FOR THEM ! – Gilliosa Spurrier-Bernard


How technology and data can support the patient journey ?

Use of Blockchain: Presentation of the Estonian e-Health system 

Artificial Intelligence: Predictive analytics to monitor, proactively manage patient outcomes and validate the quality and benefit of cancer care.


How patients can support the qualitative empirical data and strengthen cancer health research ? 

The patient community has started to generate its own evidence:

  • Disease mapping: patient experience, quality of life, burden of disease, unmet patient needs, adherence
  • Patient preferences
  • Inequality mapping: Dx/Tx access, vulnerable groups.

to inform

  • research questions (translational research)
  • clinical cancer research including PROs, trial design
  • regulatory decisions
  • access and reimbursement
  • healthcare system organisaiton
  • cancer care provisioning
  • individual treatment choices


Other topics discussed this year also included rare cancers (main challenges, recommendations, work with patient organisations, European Reference Networks, implementation of rare cancer clinical practice guidelines, how can national cancer control plans support the patients’ journey from diagnosis to treatment) and progresses in immunooncology. 

Additional resources

Twitter: @myESMO