How to optimize cancer research for the benefit of the patient?
BRUSSELS - How to optimize cancer research and to create more value for patients? A coalition of Belgian and European cancer research stakeholders, among which the Anticancer Fund, built a shared vision and set up recommendations addressing the challenges to succeed.
Cancer is a significant challenge for society, healthcare systems and the growing number of affected patients and their families. The question put forward by King Baudouin Foundation (KBF) as starting point for the strategic reflection was as follows: ‘How can we ensure that cancer patients have rapid and affordable access to the results of evidence-based, publicly and philanthropically funded studies, to improve their life expectancy and quality of life?’
Lydie Meheus, the managing director of the Anticancer Fund, was part of the Guidance Committee (1) that supported shiftN, the experts in the process of consulting a broad group of stakeholders assembled to reflect on the question. The group represented key actors in the Belgian oncology research landscape, complemented with several international experts. ShiftN set up a disciplined process of exploration of the factors that lead to suboptimal patient value in the Belgian oncology research system.
Building on these insights a conceptual model of a high performance oncology research model was designed to remedy the weaknesses of the existing research system.
The final deliverable of this strategic reflection is a set of recommendations (2) that enfold perspectives and aspirations from different stakeholders. The recommendations lay out an action-oriented agenda to move toward. It is important to note that the set of recommendations is not comprehensive nor final. It’s a solid basis to strategize the way forward.
Overview of recommendations for improvements to the current oncology research system:
- Integrate patients in research agenda setting and funding decisions.
- Create a platform for integration of different data streams.
- Install fair pricing mechanism.
- Operationalize the assessment of unmet needs.
- Leverage data sharing.
- Enhance collaboration of/with HTA/ regulatory bodies.
- Develop trial programs that assess added patient benefit with speed and flexibility.
- Facilitate access to innovative therapies in clinical studies for rare gene abnormalities/rare tumors independent of location of center and patient.
- Differentiate survivorship research by age cohort.
- Secure buy-in for the vision reflected by the aspirational oncological research model.
- Build capacity and capability of researchers to do holistic ‘patient-centered’ research and users to use research.
- Mobilize/recognize/support GPs as key partners in prevention, early diagnosis, research and survivorship.
It is hoped and expected that this initiative puts in place a basis for a strategic process of transitioning towards a future in which patients will benefit more from the enormous resources that are mobilized to combat cancer. Moreover, KBF seeks ways to assure that this initiative is a launching pad for a more international effort, an effort fully supported by Lydie Meheus since the Anticancer Fund is pushing hard for putting patient’s value on the dashboard of Europe’s Beating Cancer Plan announced earlier this year.
(1) The Guidance Committee: Lydie Meheus (Anticancer Fund), Frank Hulstaert (Belgian Health Care Knowledge Centre), Yannis Natsis (European Health Alliance), Jean-Benoît Burrion (Jules Bordet Institute)
(2) The recommendations were formulated by the following participants:
Ahmad Awada (Jules Bordet Institute), Damya Laoui (Vrije Universiteit Brussel – Flemish Institute for Biotechnology), Catherine Vanderstraeten (Health, innovation and research institute UZ Gent), Frank Hulstaert (Belgian Health Care Knowledge Centre), Jean-Benoît Burrion (Jules Bordet Institute), Lydie Meheus (Anticancer Fund), Nancy Van Damme (Belgian Cancer Registry), Olga Kholmanskikh (Federal Agency for Medicines and Health Products), Rita Banzi (Mario Negri Institute), Nora Pashayan (University College London), Antonella Cardone (European Cancer Patient Coalition), Sofie Bekaert (Flemish Institute for Biotechnology), Ward Rommel (Kom op tegen Kanker) Yannis Natsis (European Public Health Alliance).
The full report: