We are happy to announce the Digital Society Health & Well-being conference ‘Mind your data: privacy and legal matters in e-health’ on September 26th. The conference responds to the need of researchers, health care providers and companies for information and practical tools to handle privacy and legislation issues in the development and implementation of e-health applications.

This half-day conference includes five speakers who will present their experience and vision on how to handle privacy and legal issues in E-health. In addition, the conference includes various interactive sessions: an E-health forum, a Panel discussion and a networking event. There are multiple opportunities to meet and discuss the topics with colleagues and experts with various backgrounds. The conference is free, but registration is required.

Programme
12.00-13.00Lunch & E-health Forum

Session 1
13.00-13.10Overview of data protection principles in research: bringing practice and legislation together
 Marie-José Bonthuis
13.35-14.00Clinical Implementation of Successful eHealth Initiatives: ethical and legal issues
 Niels Chavannes
14.00-14.30The Personal Health Train: Privacy-preserving Learning From Health Data
 André Dekker

Break & E-health Forum

Session 2
15.30-16.00Privacy and Beyond: Inclusive Digitalisation and the Dynamics of Privacy
 Peter-Paul Verbeek
16.00-16.45ECoWeB - Mental Health App for Young People-Data and Governance Issues
 Edward Watkins
16.45-17.15Panel Discussion
17.15-17.30Wrap Up
17.30 Drinks & Networking
Speakers

Marie-José Bonthuis

 

 

 

Marie-José Bonthuis is an external Privacy Lawyer who is, amongst other things, connected to the Medical Biobank Lifelines, to the University Medical Center Groningen (UMCG) and as an expert to the ELSI Servicedesk. Together with the VSNU she developed the code of conduct for scientific research.

In the very diverse research practice it is complicated to apply the privacy principles from (amongst others) the General Data Protection Regulation (GDPR). Marie-José can illustrate her pragmatic vision with the aid of a model that helps researchers to determine which aspects of the scientific research determines how they should apply the privacy principles. This brings practice and legislation together.

Niels Chavannes

Niels Chavannes is Professor of Public Health and Primary Care at Leiden University Medical Center, general practitioner and founder of the National eHealth Living Lab (NeLL). NeLL is an open, independent, knowledge-driven eHealth community striving towards developing a sustainable, available and affordable healthcare for all.

In this presentation, Niels will focus on guidelines, eLaw and ethics for eHealth. Amongst other things, it was noticed that true (clinical) implementation of successful eHealth initiatives is currently often hampered by complex ethical or legal issues. Therefore, NeLL is facilitating a network of various experts on eLaw and ethics regarding (the implementation) of eHealth, by organising Expert Meetings to collaborate on this. Together, the experts have identified major challenges, which will be elaborated upon in the coming year. Also, NeLL is participating in creating a European CEN guideline for health-related apps. On behalf of NeLL, Niels will illustrate the way in which NeLL strives for enabling the best possible eHealth initiatives that have a positive impact on healthcare.

André Dekker

Andre Dekker is professor of Clinical Data Science at Maastricht University, Maastricht UMC+ and MAASTRO Clinic.

An important research theme in his group is the development of the Personal Health Train – a unique, global infrastructure for health and well-being Big Data that allows learning from each other’s data without the need to move the data around. This privacy-by-design infrastructure has been proven to scale to many 1000s of patients, from many countries with many applications in medicine and health.

Andre will discuss the rationale for an infrastructure like the Personal Health Train, how we ensure privacy and compliance, which challenges remain and will give examples of the cool things that are possible with the Personal Health Train.

Peter-Paul Verbeek

Peter Paul Verbeek Foto: Olivier MiddendorpPeter-Paul Verbeek (1970) is distinguished professor of Philosophy of Technology and scientific co-director of the DesignLab of the University of Twente, The Netherlands. He is also honorary professor of techno-anthropology at Aalborg University, Denmark. His research focuses on the philosophy of human-technology relations, with a specific focus on ethics of technology and responsible design. His book publications include Moralizing Technology: Understanding and Designing the Morality of Things (2011) and What Things Do: Philosophical Reflections on Technology, Agency, and Design (2005).

Edward Watkins

Edward Watkins is professor of Experimental and Applied Clinical Psychology at the University of Exeter. He currently works as a researcher, teacher and clinical practitioner within the Mood Disorders Centre, which is a partnership between the University of Exeter and Devon Partnership NHS trust. He is the director of the Study of Maladaptive to Adaptive Repetitive Thought (SMART) lab. He currently serves as an expert of the NICE Guidelines for Depression in Adults.

Edward will discuss ECoWeB, a mental health app four young people. Emotional Competence for Well-Being is a Horizon 2020 funded project intended to investigate an dpromote mental well-being in young people across Europe using a mental health mobile app tested in a large-scale randomized controlled trial. The study will be one of the first large-scale clinical trials to test the efficacy of a mobile app to promote mental health and prevent poor mental health in 16-22 year olds. The background, rationale and design of the study will be described, with reference to key privacy and legal issues, including GDPR, data processing agreements, privacy impact assessments, use of mobile phone sensors and ethical issues.

Venue

The conference will take place on September 26th at the Museum Volkenkunde Leiden. It is housed in a historic building just five minutes’ walk from Leiden’s central station.

Address:

Museum Volkenkunde, Steenstraat 1, 2312 BS Leiden

Parking

Parking (paid) is possible on a couple of parking spots (see route description). The closest parking spot is Morspoortgarage, 8 walking minutes away from the museum.

Call for abstracts - E-health Forum

The Digital Society Health & Wellbeing Consortium would like to invite researchers and businesses to submit an abstract for presenting their e-health application at the Mind Your Data e-health forum. The e-health forum is a platform where researchers and businesses can showcase their application/intervention and converse with fellow researchers. Each presenter will be asked to explain and discuss how they have dealt with privacy and legal issues surrounding their intervention.

The aim of the session is to provide an opportunity to explore a wide range of e-health applications and to stimulate an interactive discussion about real-life scenarios relating to privacy and legal matters in e-health.

Each presenter will be provided with a table on which they can show their intervention and their slides on their own laptop. Presentation formats may be: (powerpoint-) slides, videos and live demonstrations. There will be no space for posters. Each presentation should be 7-10 minutes long and invite the audience into a discussion. Presentations will take place on Thursday 26th September during the one-hour lunch session (12:00 – 13:00) and the one-hour coffee break (14:30 – 15:30). Spaces are limited, submit your abstract now!

Abstract guidelines:

The abstract should include a description of the name (e.g., e-coach) and the type of application or intervention (e.g. i-CBT), the target group(s) (e.g., chronic pain, diabetes) and the primary outcomes (e.g., higher quality of life, lower blood pressure, changes in illness behaviour). If outcomes (and mechanisms) have been studied please include the results of the study. The abstract should also include a description of the main privacy and legal issues that the researcher/ organisation faced when testing and or implementing the intervention and how these have been resolved.

Deadline for abstract submission: 1st September 2019

Submit abstract here

Sign up now!

The conference is free, but registration is required.