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PANEL: Health Data Sweden – Improving Health Data Use and Access Passed

Wednesday May 24, 2023 13:45 - 15:15 J2

Lecturers: Elin Jonsson, Emma Börjesson, Lina Nilsson, Louise Wandel, Maria Hägglund, Sara Riggare, Sebastiaan Meijer
Moderator: Anna Clareborn

Track: MIE: Special Topic: Caring is Sharing - exploiting value in data for health and innovation

Introduction

Digitalisation of health services has the potential to make healthcare safer and more efficient, and is an important foundation for high-quality care. With healthcare systems increasingly challenged by larger, aging populations with more chronicity, medicine needs to be smarter without overtaxing existing budgets. Health data can support these changes and help achieve better care in a cost-efficient manner. For digital health to reach its full potential, however, it is vital that innovators and providers are given the opportunity to reap the benefits of health data. In Europe, the proposal for a European Health Data Space aims to both empower people to control and utilize their health data in their home country or in other Member States, as well as offer “a consistent, trustworthy and efficient framework to use health data for research, innovation, policy-making and regulatory activities, while ensuring full compliance with the EU's high data protection standards” [1].

The European Digital Innovation Hub (EDIH) [2] project Health Data Sweden (HDS) [3], initiated in January 2023, aims to support this development by creating a more effective access to services to regarding digitalisation of the health care system both regionally and nationally, through the use of health data. The HDS connects 17 partners from all over Sweden, who currently offer services in health data and related fields such as digital care and e-health, to various target groups and stakeholders. HDS will also connect with other EDIHs throughout Europe, to transfer knowledge and share best practices concerning the use of health data and related fields, in order to improve healthcare on the EU level.

Rationale

In this panel, we will present some of the main challenges and needs in the health data context identified by the partners behind EDIH-HDS, and discuss how the project will address these obstacles. The main core offers will provide the structure for the presentation. In order to engage the audience and stimulate feedback and discussion, the panel will contain interactive elements throughout.

Programme

The planned duration of the panel is 90 minutes. The presentation will have a duration of 60 minutes and will be followed by 30 minutes of discussion where the audience will take an active role. Every section of the presentation will finish with a brief Q&A for the audience using interactive digital tools. The result of the Q&A will form the basis for the final discussion.

0-10 min. Sebastiaan Meijer will give an introduction to EDIH-HDS, and introduce the structure and objectives of the panel. He is professor in Health Care Logistics and Deputy Head of School at KTH Royal Institute of Technology. He is also the national coordinator for the EDIH-HDS project.

In addition to Prof. Meijer, the sections will be presented by Maria Hägglund, Emma Börjesson, Louise Wandel, Lina Nilsson, Elin Jonsson, Linda Daniloff, and Sara Riggare. Dr. Hägglund is associate professor in health informatics and a senior lecturer in implementation science at Uppsala MedTech Science & Innovation Centre at Uppsala University. She is the coordinator of the EDIH-HDS Uppsala Node. Emma Börjesson is a project manager at Leap for Life/Halmstad University. Louise Wandel is project manager at Health Data Centre/Halmstad University. Emma and Louise manage the health data development core offer. Elin Jonsson is a project manager at eHealth Arena and manages the access to finance core offer. Linda Daniloff is an innovation lead at Bron Innovation. Sara Riggare is a researcher at the Department of Women's and Children's Health and a member of the Participatory eHealth and Health Data Research Group at Uppsala University. She is also a patient expert and a task lead for Skills and Training activities.

10-20 min. The focus here will be the core offer Health Data Development, and the optimisation of the accessibility and use of health data. Some obstacles in this context are differing levels of access in different national and international regions, and lacking dissemination of R&D results to societal stakeholders. The EDIH-HDS project aims to help further accelerate the development in fields like e-health as well as the use of artificial intelligence (AI), cyber security and High Performance Computing (HPC).

20-30 min. Skills and Training are the main subject of the next core offer. There is already a rich offering of training and skill building resources available, but it’s challenging to optimise them for all relevant stakeholders, for instance in terms of accessibility. ). A focus of EDIH-HDS is to help deliver suitable education modules for various target groups.

30-40 min. This core offer addresses Access to Finance. There is a lack of awareness regarding sources of financing, and new business models are needed to address the complex interplay between small and medium-sized enterprises (SMEs), small mid-caps and the public sector. EDIH-HDS aims to address these issues, as well as connect users of the ecosystem with identified financiers.

40-50 min. Access to Innovation Ecosystem and Networking will be supported by the next core offer. There are rich opportunities in regional, national and global/European contexts, but it can be daunting for individual stakeholders and stakeholder groups to make the most of such an extensive offering. One aim of EDIH-HDS is to help optimise the collaboration between the partners and international EDIHs, with the objective of improving access to the ecosystem for all users, including international users such as SMEs.

50-60 min. The final core offer is Test before Invest, which reflects the need for increased awareness of and better access to digital transformation expertise, know-how and services, including testing, validation and experimentation facilities, as well as state-of-the-art infrastructure such as labs, demonstration facilities and testbeds in health data and all key technologies.   

Acknowledgement

Health Data Sweden is part of the EU funding programme Digital Europe: European Digital Innovation Hubs, with additional funding granted by Vinnova (2022-03166) and Tillväxtverket.

References

[1] A European Health Data Space for people and science [Internet]. European Commission - European Commission. https://ec.europa.eu/commission/presscorner/detail/en/ip_22_2711

[2] EDIH. https://digital-strategy.ec.europa.eu/en/activities/edihs

[3] Health Data Sweden. https://healthdatasweden.eu

Language

English

Seminar type

On site only

Level of knowledge

Advanced

Conference

MIE

Authors

Maria Hägglund, Sebastiaan Meijer, Emma Börjesson, Louise Wandel, Lina Nilsson, Jonas Binnmyr, Erika Tanos, Sara Riggare, Anna Clareborn

Lecturers

Profile image for Elin Jonsson

Elin Jonsson Lecturer

eHealth Arena

Emma Börjesson Lecturer

Halmstad University

Lina Nilsson Lecturer

Docent Hälsoinformatik
Linnaeus University

Louise Wandel Lecturer

Halmstad University

Profile image for Maria Hägglund

Maria Hägglund LecturerOrganizer

Associate Professor / Senior Lecturer
Uppsala University

Maria Hägglund is an associate professor in health informatics and a senior lecturer in implementation science at Uppsala MedTech Science & Innovation Centre. 2019/2020 she was a Keane OpenNotes Scholar and a visiting Lecturer on Medicine at Harvard Medical School. As a member of the DOME research consortium, she has explored the impact of patients’ access to their electronic health records (including notes) through the national Swedish patient portal. She is the chair of the EFMI working group on Citizen Health Data, and chair of the MIE2023 Scientific Program Committee.

Profile image for Sara Riggare

Sara Riggare Lecturer

Researcher in Health Informatics
Uppsala University

Sara Riggare

Profile image for Sebastiaan Meijer

Sebastiaan Meijer Lecturer

Professor
Division of Health Informatics and Logistics, School of Engineering Sciences in Chemistry, Biotechnology and Health (CBH), KTH Royal Institute of Technology, Huddinge, Sweden

Professor at KTH

Anna Clareborn Moderator

Project Manager
Uppsala University

I’m a project manager with a special interest in the ethics of health data and patient and public engagement.