2022 World Day Brain Event - IPPOSI Presentation
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Ipposi is a patient-led organization focused on integrating patient perspectives in health innovation, particularly in digital health and health data. They emphasize the importance of patients as partners in the creation of digital health solutions and advocate for accessible, interoperable health information systems. Key initiatives involve collaboration on health information policies, fostering public and patient involvement, and supporting the European health data space goals.
2022 World Day Brain Event - IPPOSI Presentation
- 1. Who are IPPOSI? We are a patient-led organisation that works with patients, science & industry to put patients at the heart of health innovation. www.ipposi.ie info@ipposi.ie @IPPOSI
- 2. What do we do, and how? • Digital discussions • In-person conferences • Training programmes • Matchmaking • Member resources • Coalitions and networks • Citizens’ juries EDUCATION ADVOCACY INFORMATION
- 3. We have three priority areas
- 4. 4 Digital health and health data is first and foremost about people Digital health includes health data, and health data is patient data With their consent, patients hold the key to unlocking our digital health future Patients must be partners in co-creating our digital health future IPPOSI and digital health & health information
- 5. 5 IPPOSI and health information Health information must be collected, shared and used in a digital format, and in an interoperable and standardised way Health information must be readily accessible (in full) to the individual to whom it relates i.e. the patient or service user Health information should be used for primary (care) and secondary purposes (service management, policy, research, and innovation), with appropriate restrictions and safeguards in place Health information should be shared and used based on individual preferences, and ideally, with the involvement of the individual
- 6. What are the key developments? What is important for Irish patients? Where can we take joint action to have an impact? DoH health information bill (autumn 2022) HIQA health information policy considerations NCH electronic health record (and portal) DoH/HSE revised eHealth Strategy (autumn 2022) Slaintecare plan implementation (objective 10) EU Health Data Space vision (2030 commitment) (Legislation, regulation, policy)
- 7. The Health Information Bill AUTUMN 2022 National health information guardian National health information centre Rights-based approach fit-for-purpose national health information system” “empowers our frontline health staff to share information for patient care” “information follows the patient” “increase in the availability of data for research purposes” “legislation is a stepping stone, not the destination”
- 8. What’s happening at the EU level? European Data Space is one of the priorities of the European Commission 2019- 2025. A European Health Data Space (EHDS) is one of several data spaces. Joint Action Towards the European Health Data Space (TEDHAS) established in 2021 https://tehdas.eu/ European Commission proposal for a regulation on the Health Data Space (public consultation ongoing) Three objectives to improve cross-border care; unlock potential of EU-wide data; and support research and innovation European Digital and Health Data Board to be established, with patient representation €810million in funding to build the necessary infrastructure EU DIGITAL DECADE DIGITAL COMPASS All individuals living in the EU will have access to their own health information (medical records) by 2030
- 9. 9 What can we do? 1. Raise our own awareness by attending training and education days on digital health issues 2. Create spaces for others to chat about the benefit of digital health • In-person or online 3. Share accessible informative resources with our personal and professional networks • IPPOSI, Understanding Patient Data, Data Saves Lives, OECD, EUPATI etc. 4. Formally communicate citizen and patient needs and expectations for digital health • Link up with other likeminded organisations • Publicise your positions • Respond to public consultations 5. Remember to always emphasis the need for public and patient involvement in building our digital health future
Editor's Notes
- #2: 1
- #3: 2021 – three digital discussions on digital health: Ireland’s preparedness, European commitments, Citizen/patient involvement – we also hosted three podcasts around the topic 2019 – conference on EHRs Ongoing – modules on clinical trials, medicines regulation, health technology assessment – and soon research ethics – and potentially digital health Ongoing – match patients completing our training with available PPI opportunities Ongoing – prepare resources to help members with their own education or advocacy – e.g. PPI mapping, national and EU consultation responses, toolkits and briefing notes 2021 – coalition around the vaccine Ongoing – campaign to raise awareness about the importance of building a digital health future Ongoing – network of graduates and ENP linked to EUPATI 2021 – citizens’ jury on access to health information for secondary purposes 2022 – citizens’ jury on the future use of genomics in healthcare and research in Ireland
- #4: Access to innovation – tackles issues around the health technology assessment process and the reimbursement process for new medicines – engage with NCPE, HSE Drugs Group, IPHA Patient and Public involvement – facilitate the inclusion of more patient voices – engage with the NPF, the CCO, the HSE Board, the PPI Ignite Network, the HRB, individual companies Understanding patient data – explores how we can get maximum benefit from our health data, while protecting the rights of individuals to privacy and consent – engage with the DoH, the HSE OOCIO, the HIQA Also rare diseases
- #5: 4
- #7: HIQA = four pillars: engagement, legislation, governance, technical and operational capacity, IPPOSI on advisory board and we will respond to consultation NCH = business case approved, work started in advance of 2024 opening, just under two years to deliver, digital health team in contact with IPPOSI and we will feedback on PPI strategy for digital health eHealth strategy = needs a refresh, in touch with Health infrastructure team in DoH and we will feedback on draft strategy during consultation period Proposal for a regulation around the health data space, we will be submitting a response to the open consultation
- #8: Establish a “Data sharing” principle Review IHI, and move to PPSN as the key identifier from the public side, the IHI will be used from the system side. People will be asked for PPSN to be identified by the system. Important that guardian is supported by a public panel Important that there are public and patient voices in the governance structures of the centre Important that individuals-citizens are offered better rights to their information than FOI or DPA
- #9: 8