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Bringing a health claim to information: Measuring the impact of health data on the health outcomes of European citizens

Periodic Reporting for period 1 - BAHCI (Bringing a health claim to information: Measuring the impact of health data on the health outcomes of European citizens)

Période du rapport: 2018-08-01 au 2020-07-31

National health information (HI) systems provide data on population health, the determinants of health and health system performance within countries. The evaluation of these systems has traditionally focused on statistical practices and procedures, and not on data use or reuse for policy and practice. This limits the capacity to assess the impact of HI systems on healthcare provision, management and policy-making.

BAHCI which was hosted at Sciensano, the Belgian Public Health Institute ultimately aimed to strengthen the impact of national HIS in policy and practice. This relied on a better understanding of the mechanisms that underpin knowledge translation, evidence-informed decision making, and stakeholder engagement. By looking at measuring the exploitation of health data in policy and practice, this research addressed an important knowledge gap in EU-HIS evaluation.

The main objectives of BAHCI were to provide 1) a methodology to monitor the impact of HIS (health information systems) in policy and practice, the "Health Information-Impact framework" and 2) a tool to monitor uptake of HI by stakeholders, the “Health Information (HI)-Impact Index”. Moreover, EU-MS have limited visibility on the extent to which new types of data sources can inform routine (public) health surveillance activities and policy development. Our research has also specifically addressed this issue by examining the use of data linkage, artificial intelligence, and next-generation-sequencing in routine health monitoring activities, in policy development and clinical practice.
BAHCI successfully achieved the critical objectives outlined in the DoA, that is: i) the development of a methodology to monitor the impact of HIS in policy and practice, ii) the development of a tool to monitor uptake of HI by stakeholders and/or capacity for knowledge translation, iii) piloting of this tool overall at systems level and in specific health areas.

We developed a new model, the HI-Impact framework, in which four domains are essential for mapping the impact of national HI systems: (i) HI Evidence Quality, (ii) HI System Responsiveness, (iii) Stakeholder Engagement and (iv) Knowledge Integration. A comprehensive impact assessment of HI systems requires addressing the use of HI in public health decision-making, health service delivery and in other sectors which might have not been considered previously. Monitoring Stakeholder Engagement and Knowledge Integration certifies that the use of HI in all policies is an explicit point of assessment. The HI-Impact framework was developed after conducting an extensive review of knowledge translation frameworks applicable in the public health field and that were published between 2008 and 2018. The framework brings synergy to EU public health investments in the latest health information technologies (HIT), by aiming to monitor the return on investments of national health information systems.

The HI-Impact Index was developed after conducting a large web-based Delphi consultation with over 130 public health professionals and policy makers. The Delphi allowed to reach agreement on a list of 30 evaluation criteria European public health agencies and national authorities could use to: 1) assess the quality of evidence produced by HIS (HI and evidence quality), 2) the access and availability of evidence (HIS responsiveness), 3) the extent to which stakeholders have been engaged and use the evidence (Stakeholder engagement), and the extent to which this evidence has been leveraged across sectors and by civil society to improve population health and well-being (Knowledge Integration).

To test the agility of the conceptual model, the HI-Impact Index was piloted i) at Health Information Systems (HIS) level within the EU InfAct Joint Action participating countries (15 out of 28 countries participated) ii) at institutional level (within Sciensano), and iii) in specific health areas including cancer care and research. The HI-Impact framework and Index will also be used to study the wider impacts of COVID19 on population health.

Throughout the project the emphasis was on record keeping, and timely dissemination to the relevant stakeholders with a focus on transparency and accountability in the methods used. Principle BAHCI research outputs include scientific publications (see list below), and the development of the Health Information-Impact Index. The main research results have been shared with the scientific community, in open access publications, to public health surveillance professionals, policy makers and the general public in scientific conferences, public health newsletters, in lecture series with university students, and via the project website which provides a description of the activities and results: https://www.sciensano.be/en/projects/bringing-a-health-claim-information-measuring-impact-health-data-health-outcomes-european-citizens. The webpage references EU funding details, and the MSCA GA n° 795051.
The focus in health information system (HIS) evaluation thus far has largely been on assessing the production of data, and less the use and impact of the evidence in practice. Currently however, there is no consensus on how to audit knowledge translation at systems level. Knowledge translation (KT) is defined as the appropriate exchange, synthesis and ethically sound application of knowledge to strengthen the healthcare system and improve health.
Developing a methodology to monitor KT M is a new endeavor that can provide important insights on the preparedness of health systems to leverage evidence for intervention.

BAHCI addressed knowledge brokering between different stakeholders such as policy makers and healthcare providers, doctors and their patients, patients and their community representatives. Across EU-MS, structural differences (i.e. services provided in private or public hospitals) can also influence the nature of these interactions and play a role. This is why developing the “HI Impact Index” required complete representation from EU-MS, and an interdisciplinary approach that involves experts in healthcare delivery and service use, public health surveillance and monitoring, health care policy and financing, health information technology, patients and users. We had access to leaders of national and European public health institutes through the InfAct Joint Action on Health Information, a consortium of 40 national health and research institutes, as well as ministries of health in 28 European countries.

An important aspect of BAHCI has been to take into consideration the use of health information by new actors that impact on health (i.e. food and agriculture, education, urban planning, …), whereas traditionally HIS evaluation has focused on data production within the health system. Because the HI-Impact framework incorporates a cross-sectoral dimension, this facilitated the uptake of of BAHCI outputs to PHIRI, the EU Horizon 2020 project to investigate the wider impacts of COVID-19 on population health and well-being. Our study confirms that now more than ever producing data is not enough, national health agencies need to envision ways to bring high quality information center stage into policy and practice.
Brochure page 1
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Brochure page 2