Irish Platform for Patient Organisations, Science & Industry

On Wednesday 3 May, IPPOSI is hosting an in-person conference, ‘Building a Data-Sharing Enabled Health Sector in Ireland.’

Taking place at the Clayton Hotel Cardiff Lane in Dublin, this event will provide an opportunity for IPPOSI members and other stakeholders to come together and explore areas of consensus and divergence around tricky topics like sharing health information with patients, sharing health information within the health system, and sharing health information across the broader health sector.

The conference agenda is still being finalised. A tentative agenda can be viewed below:

09:30    Registration and coffee
10:00    Welcome and introduction
10:10     Data sharing in Ireland: setting the scene
                Prof. Richard Greene, Chief Clinical Information Officer, HSE and Professor of Obstetrics, UCC
10:30    Panel Discussion: “Fearful of sharing? How can we build our health-data-enabled future?

Moderator: Loreto Grogan, National Clinical Information for Nursing and Midwifery (HSE)
Panelists: Pascal Derrien, Chair of the IPPOSI Member Working Group on Digital Health & Health Information (Migraine Association of Ireland)
Anca Toma, Executive Director of the European Patients’ Forum (EPF)
Dr David Hanlon, GP and National Clinical Advisor and Group Lead for Primary Care (HSE)
Panelist (pending invite confirmation, research)
Panelist (pending invite confirmation, DPO)

11:10     Questions and comments
11:30     Coffee Break
11:50     Lightning Presentations
12:45     Lunch
13:45     Parallel Sessions:
Session 1: Data sharing across institutions and borders
Session 2: Data sharing for patient access
Session 3: Data sharing for secondary use

15:00    Panel Discussion: “Starting to share: How are we building our health data future?
Moderator: Dr Sarah Barry, RCSI, School of Population Health
Panellists: Barry Lowry, Government Chief Information Officer, Dept of Public Expenditure
Muiris O’Connor, Assistant Secretary of the Research and Development and Health Analytics Division, Dept of Health
Bernard Gloster, Chief Executive, HSE
Dr Markus Hesseling, Chief Medical Information Officer and Consultant
Paediatrician, Children’s Health Ireland
Dr Sarah Craig, National Health Information Systems, Health Research Board
Dr Maria Ryan, HIQA
Dr Derick Mitchell, Chief Executive, IPPOSI

15:45     Next Steps

Why explore how to build a data-sharing-enabled health sector in Ireland?

Ten years ago, a review of Information Governance in the UK unearthed a ‘culture of anxiety’ around sharing health information which permeated the health and social care sector. This discovery led to renewed efforts by professionals and the public to find consensus for the safe and appropriate sharing of health information, with the goal of making information sharing which is in the interests of the individual and of public health the rule, rather than the exception.

As Ireland prepares new Health Information Management legislation, it is timely to do our own review of where we stand culture-wise. Are we ready to embrace a data-sharing-enabled health environment? What are we comfortable with? Is there still work to do?


  • Access: How do we ready ourselves to give patients full access to their health information? What does access look like? How is access facilitated? Are there plans for access plus management?
  • Individual Care: How do we share patient information between health care professionals and other social care providers? How do we involve the patient in this process?
  • Secondary Purposes: How do we share for purposes beyond individual care? How do we involve the patient in this process? Do they have any personal agency in terms of sharing information themselves?
  • Governance: How do we govern the sharing of health information? What are the major governance issues? Who do we involve in governance issues, and when? What mechanisms do we need?

Interested in attending? Register here.

Register Here
3 May 2023

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