Irish Platform for Patient Organisations, Science & Industry

On the 1st of December 2022, IPPOSI facilitated an online discussion on ‘Rights-Based Approaches to Accessing Health Information’.

The discussion featured a multi-stakeholder panel, including Ruth Davis (Barrister-at-law at the Law Library), Kerry Lawless (IPPOSI Patient Education Graduate and PhD researcher), Dr. Brian McMillan (General Practitioner and Senior Clinical Lecturer at the University of Manchester), Kevin O’Carroll (Technical Standards Manager at HIQA), and Mary Vasseghi (Patient advocate and PhD researcher at Trinity College Dublin and FutureNeuro).

A recording of the discussion is available here.

Some of the main takeaways from the discussion are:
  • Patients want to have the choice to access their own health information, and this access should be through a single portal, easily accessible at any time and which holds a full & complete record of a person’s medical history. A portal should be co-designed with patients to ensure that it meets their expectations and needs.
  • Patients in Ireland, or the healthcare professionals treating them, cannot currently obtain a full picture of a patient’s medical history. This raises patient safety concerns & creates huge inefficiencies in terms of how time & resources are spent trying to share health information across a fragmented (often paper-based) system.
  • Ireland urgently needs a national approach to health information management. New legislation should promote a rights-based framework around information access. Urgent investment and implementation should put the necessary regulation and infrastructure in place to realise these rights.
  • In the UK, GPs are contractually obliged to provide patients with access to their health information. The NHS now allows patients (who have downloaded an authorised app) to automatically see their health information in digital format.
  • A growing body of evidence suggests that providing patients with access to their health information can improve communication between patients and healthcare professionals, improve patient safetyimprove health literacy, and improve patient compliance with treatment plans.

Following this discussion, IPPOSI submitted a response to HIQA’s consultation on Draft National Standards for Information Management in Health and Social Care . We encourage anyone interested in the topic of health information management to click on the link below to read our submission as we believe it contains important recommendations.

The discussion was part of IPPOSI’s digital campaign on Health Information in November-December 2022.  The campaign outputs can be found on Twitter using the hashtag #MyHealthMyData or at the @IPPOSI twitter account.

5 February 2023
 

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