Health data – a matter of safety, robustness and advancement
In healthcare we constantly need to make accurate decisions based on efficient and correct assessments of not just the short- but also long-term value and performance of new therapies and drugs for patients. We need robust and especially complete data from patients. This however poses challenges in terms of data protection, regulatory approvals to meet comparative effectiveness and value in terms of health outcomes. Experts and advocates discussed the above matters during the lunch session on Friday, 4th October 2019, titled: Making real world data real – new methods for EU health technology assessments.
- We do not measure what matters most to patients
- There are economic disincentives for hospitals even if the drug is less invasive – this should not happen
- In the 21st century we are still trying to provide healthcare that is not working
- We need to think big and globally when it comes to health data to provide better care for all
- We need complete and robust data in order to work effectively
- We need large amounts of data to give us real insights, the patient is a single outcome, but the input has to be much larger
Amongst the experts, Dr Anja Schiel (Senior Adviser & Statistician, Unit for HTA and Reimbursement, Norwegian Medicines Agency (NoMA)) addressed the uncertainties faced during the conduction of clinical trials often resulted from incomplete and flawed patient data. She encouraged the audience to always pose questions such as (i) what data do we need to generate in order to answer the posed questions (ii) what does the data we have exactly tell us and (iii) is the data we gathered robust and complete to draw conclusions or allow further research.
The ‘Health Technology Assessment’ was introduced to the audience as the systematic evaluation of the properties, effects and/ or impacts of health technology and a health economics model to predict future scenarios based on existing available data. Dr Schiel stressed the importance of contextualising data in order to be useful and applicable in different national health care and its finance systems. This implies that treatment and economic-based decisions are reliant on robust evidence. Dr Schiel also posed the question why what was good enough for approval is often not acceptable for reimbursement anymore.
Audience and experts also discussed the crucial aspect of patient data safety initiated by a comment from one of the participants outlining the need to especially protect data of vulnerable groups such as migrants. Participants agreed that there is the danger of data falling into hands of those using it to commercialise needs and this has to be prevented. Patients have the right to share their information with whomever they want and it is the system’s responsibility to keep the data safe.
The healthcare sector needs robust data to advance and optimise treatment for patients. This means that public health professionals and those using data for research purposes need to communicate why and how data is used to increase the willingness of sharing.
This Blog was written by the Young Gasteiner Anna Stielke