In order to explore to what extent current systems can deliver the data that would be needed for a more outcomes-based care model, the European Federation of Pharmaceutical Industries and Associations (EFPIA) has launched a project together with i~HD to perform an assessment of how a selected sample of European hospitals collect data on Heart Failure outcomes.
Heart failure is a chronic condition with dramatic consequences for people’s quality of life that is estimated to affect more than 10 million people in the EU, also leading to around 2% of all healthcare expenditure. Collecting meaningful data on the health status of heart failure patients is an important step to ensure better quality care, and as a result better quality of life, for these patients. The project will continue to run through 2020-21.
How ready are European hospitals to evidence their outcomes?
Our role is to reflect wide-ranging background expertise about many of the challenges that lie in scaling up value-based healthcare, but with a special emphasis on clinical engagement issues and on the availability of relevant health data to provide evidence of clinical outcomes achieved by healthcare providers. i~HD will assess the readiness of 10 example hospital EHRs to measure health outcomes.
The benchmark for the exercise is ICHOM’s standard set for Heart Failure, which represents a global standard for the data that ideally should be collected, including patient-reported outcomes. The objective is to explore how much of the ICHOM standard set is routinely collected today in a sample of hospitals, and draw conclusions on what the gaps are and how they could be addressed.
How to address the gaps to accelerate
a transition towards an outcomes and value based focus
A reference group with representatives of patients, clinical experts, hospital management and industry experts is providing advice to the project, including on the scope and deliverables, selection of hospitals and what data items to focus on.
i~HD is a partner in an initiative led by the European Patients’ Forum to convey to the public how health data can contribute to gaining insights that lead to improvements in the quality and safety of healthcare, and can accelerate research leading to novel treatments, medical devices and software such as artificial intelligence.
The initiative is joint sponsored by EFPIA, EIT Health and MedTech Europe. The role of i~HD is to create content for the web portal and other dissemination materials that explain health data, how it is used, the benefits that arise from its use and how the data and the rights of patients and citizens are protected during this use.
Objective: convey to the public how health data
can contribute to gaining insights
Our work included the collection of case studies that illustrate ways in which large-scale health data use has led to health system improvements. We also helped shape and structure the website. We contributed to multi-stakeholder engagement events as well.
The Data Saves Lives campaign and website was launched on 12 November 2019 and obtained a lot of visibility.
The Multiple Sclerosis Data Alliance (MSDA) is a global multi-stakeholder collaboration that was launched in 2019. It is working to accelerate research insights for innovative care and treatments for people with Multiple Sclerosis (MS).
Scaling-up real-world MS data is necessary to transform the care of people with MS and MSDA envisions a patient-centric data ecosystem in which all stakeholders contribute and use big data to co-create the innovations needed to advance timely treatment and care of people with MS.
The MSDA Toolbox aims to reduce the time needed to find and assess data registries and cohorts, building a data source catalogue and tools that can help a potential research user to understand the kind of data that is inside any data source before formalising a research data access request.
The MSDA Academy focuses on awareness raising, community building and education, providing education to the MS professional, research and patient communities on topics relating to good practices in the use and sharing of data.
We help shape the MSDA Academy workshops
and the information governance approach
i~HD is a partner in this consortium, which is being funded mainly by pharma industry sponsorship. We lead a work package on MSDA Academy workshops, and lead work on information governance (including GDPR compliance, and data sharing agreements).