Challenges and Opportunities With Routinely Collected Data on the Utilization of Cancer Medicines. Perspectives From Health Authority Personnel Across 18 European Countries

Abstract

Background: Rising expenditure for new cancer medicines is accelerating concerns that their costs will become unsustainable for universal healthcare access. Moreover, early market access of new oncology medicines lacking appropriate clinical evaluation generates uncertainty over their cost-effectiveness and increases expenditure for unknown health gain. Patient-level data can complement clinical trials and generate better evidence on the effectiveness, safety and outcomes of these new medicines in routine care. This can support policy decisions including funding. Consequently, there is a need for improving datasets for establishing real-world outcomes of newly launched oncology medicines.Aim: To outline the types of available datasets for collecting patient-level data for oncology among different European countries. Additionally, to highlight concerns regarding the use and availability of such data from a health authority perspective as well as possibilities for cross-national collaboration to improve data collection and inform decision-making.Methods: A mixed methods approach was undertaken through a cross-sectional questionnaire followed-up by a focus group discussion. Participants were selected by purposive sampling to represent stakeholders across different European countries and healthcare settings. Descriptive statistics were used to analyze quantifiable questions, whilst content analysis was employed for open-ended questions.Results: 25 respondents across 18 European countries provided their insights on the types of datasets collecting oncology data, including hospital records, cancer, prescription and medicine registers. The most available is expenditure data whilst data concerning effectiveness, safety and outcomes is less available, and there are concerns with data validity. A major constraint to data collection is the lack of comprehensive registries and limited data on effectiveness, safety and outcomes of new medicines. Data ownership limits data accessibility as well as possibilities for linkage, and data collection is time-consuming, necessitating dedicated staff and better systems to facilitate the process. Cross-national collaboration is challenging but the engagement of multiple stakeholders is a key step to reach common goals through research.Conclusion: This study acts as a starting point for future research on patient-level databases for oncology across Europe. Future recommendations will require continued engagement in research, building on current initiatives and involving multiple stakeholders to establish guidelines and commitments for transparency and data sharing.

Procurement of medicines to treat cancer, 2015–2020, China

“…To control the government’s expenditure, risk-sharing arrangements can be introduced when these innovative medicines are included on the National Reimbursement Drug List, and real-world evidence can be used to monitor the medicines’ cost–effectiveness. 33 , 34 If a targeted medicine has no meaningful clinical benefits compared with essential medicines, clinical guidelines should recommend use of the latter over the former. Currently, the Chinese health-care system is not well equipped to support successful implementation of risk-sharing arrangements.…”

A Systematic Review of Literature on Sustaining Decision-Making in Healthcare Organizations Amid Imperfect Information in the Big Data Era

“…USA Palanisamy & Thirunavukarasu [45] Implications of big data analytics in developing healthcare frameworks-A review. India Pisana [46] Challenges and opportunities with routinely collected data on the utilization of cancer medicines: Perspectives from health authority personnel across 18 European countries. Sweden Qian [47] Multi-label feature selection based on information entropy fusion in multi-source decision system.…”

Treatment patterns, adherence to international guidelines, and financial mechanisms of the market access of advanced breast cancer therapy in Bulgaria

“…The higher cost of cancer medicines, the type of national public insurance schemes, and the non-availability of the facilities are the main established barriers to therapy access (22). Funding of oncology medicines is nationally regulated both for outpatient and hospital treatments (23). The studies reported substantial differences in anticancer medicines included in the Essential Medicines List, availability in private and public hospitals, and the level of reimbursement (24,25).…”