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Patients' Right Conference 2023

September 2023, RCSI, Dublin

Stephen McMahon, Inna Ivanenko, Minister Stephen Donnelly, Iryna Rachynska

Pictured above L-R: Stephen McMahon, Inna Ivanenko, Minister Stephen Donnelly, Iryna Rachynska

Prof. Hannah McGee PhD, DSc, FEHPS, MRIA Deputy Vice Chancellor for Academic Affairs RCSI

Prof. Hannah McGee
Deputy Vice Chancellor for Academic Affairs, RCSI

In her welcome address Prof McGee said RCSI is pleased to host the Irish Patients' Association event. As a university focused exclusively on Medicine and Health Sciences, in tandem with the original founding remit of a national role training surgeons and overseeing standards of surgery, RCSI is about quality in all aspects of healthcare delivery. She said that they RCSI have a specific ‘PPI’ (patient and public involvement) orientation for both our education and research activities. It is specifically called out in their Strategy (2023-27). Staff leading in both areas include patients and the public, for instance in education in training in communication and procedural skills for Medicine, Pharmacy, Physiotherapy and Physician Associate students and in research in study design and interpretation of results. This is a key advance in recent years across all of the RCSI's activities. She welcomed everybody to the heritage building on the Green. Here since 1810, she xplained that it was the location of the Irish Citizen Army’s standoff against British Forces on the Green on Easter Week 1916. These rooms you are in hosted Countess Markievicz, Michael Mallon and their troops with this College Hall being the ‘field hospital’ for injured soldiers during the week. Prof. McGee hoped that everyone in attendance enjoyed their deliberations in this historic setting.

Mr Stephen McMahon
Co-Founder and Director, IPA

Stephen McMahon began by extending a warm welcome to the audience and dignitaries, expressing gratitude to the RCSI for its hospitality. He emphasised the urgent need for a healthcare reform that prioritizes patient safety and recounted the tragic consequences of preventable deaths and injuries, which serve as a compelling motivation for change. Central to McMahon's message was the concept of patient-centered care. He stressed the importance of actively involving patients in their healthcare decisions, respecting their values, and ensuring that their voices are heard throughout their healthcare journey. Quoting Sir William Osler, he highlighted that great physicians treat not only the disease but also the patient who has the disease. McMahon underscored the vital role of promoting a culture of patient safety in healthcare. He acknowledged the challenges in creating such a culture but drew parallels with industries like aviation that have successfully embraced a zero-event culture, suggesting that healthcare should follow suit. Accountability, transparency, and robust reporting mechanisms were emphasized as crucial components of addressing issues compromising patient safety. Whistleblower protection was stressed, and McMahon expressed a duty to safeguard these individuals who play a pivotal role in ensuring patient well-being. He highlighted the importance of creating a culture of psychological safety within healthcare. Fundamental patient rights, such as timely and appropriate access to healthcare, informed consent, privacy, and dignity, were reiterated as non-negotiable principles. The goal of healthcare reform was underscored as the provision of safer, more effective, equitable and compassionate care. Patients Focus is key. The importance of upholding patients' rights, supported by international treaties, was emphasised, with a particular focus on the inherent right to safety. In conclusion, McMahon called for patients to remain at the core of healthcare, urging the development of a culture of safety, accountability, transparency, and whistleblower protection based on fundamental rights. Collaboration with like-minded allies was encouraged to achieve the common goal of delivering better, more compassionate healthcare for all. He consluded his speech with expressions of gratitude to the attentive audience. To draw on the words of the President John F. Kennedy, "The rights of every man, woman and child are diminished when the rights of one man, woman or child are threatened." Additionally, McMahon introduced key speakers and panel discussions, such as Mr. Ger Deering sharing a report on healthcare barriers, Capt. Niall Downey discussing the transfer of safety practices from aviation to healthcare, and panels featuring patient and industry experts focusing on patient safety and innovation, particularly in the realm of Artificial Intelligence. He also highlighted the presence of colleagues from the Ukraine Patients organization, extending a warm welcome to them as they joined the conference, saying “” askavo prosimo do nashikh beregiv”. “Welcome to our shores”.

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Mr Stephen McMahon

Co-Founder and Director Irish Patients' Association

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Ger Deering
Ombudsman

Speaking of his investigation into the HSE’s Treatment Abroad schemes, he said "In April 2023 my Office published ‘In Sickness and In Debt’ - a report on our investigation into the administration by the Health Service Executive of schemes that fund necessary medical treatment in the EU/EEA or UK (primarily the Cross Border Directive and the Northern Ireland Planned Healthcare Scheme). Our investigation found an unreasonable and inflexible approach by the HSE in administering some aspects of the schemes. The schemes fund treatment abroad for healthcare which the State is either unable to provide, or unable to provide in a timely manner in Ireland. The schemes are designed to allow patients who cannot access necessary healthcare at home, either due to the cost or the waiting period, to travel abroad to receive that healthcare. The patient then seeks reimbursement of the cost of the treatment from the HSE. The investigation was triggered by a number of complaints my Office received from patients who had accessed the necessary healthcare abroad but had then been unable to access reimbursement under the schemes. Although the number of complaints to my Office had been low in the context of the overall schemes, I was struck by the impact on the physical, mental, and financial well-being that the process had on certain patients. The report made 21 recommendations which focused on improving the administration of the schemes, both moving forward and in the investigation of complaints that remained with my Office. I am pleased to say that the HSE accepted all of the report’s recommendations and it put together a team to deal with their implementation. That team is also reviewing cases at either the request of my Office or at the request of the patient themselves. To date there have been over 200 cases identified for review and the HSE is continuing to work through those. Already my Office has seen patients receive reimbursements who were previously denied payment due to minor or administrative issues with referral letters. We have seen patients who disputed the level of reimbursement provided access to a meaningful appeals process and, in many cases, a full re-evaluation of the cost has led to an increased reimbursement for those patients. We have also seen patients receive reimbursement who borrowed from family members to pay for the treatment but were denied reimbursement due to the HSE’s onerous ‘proof of payments’ requirement. My Office has continued to liaise with the HSE since the report was published last April and I welcome the progress being made by the HSE in implementing the recommendations in the report. I am confident that the full implementation of the recommendations will have a positive effect for patients seeking reimbursements under any of the treatment abroad schemes and will put those patients at the centre of all future decisions." The report, ‘In Sickness and In Debt’, is available on the Ombudsman’s website: www.ombudsman.ie

Ger Deering

Ombudsman and Information Commissioner

for Ireland

Sponsors

Mr Stephen Donnelly
Minister for Health and TD

The Minister opened his address by saying he was committed to the IPA and the important work we do and thanked us for our invitation. The Minister highlighted important patient rights; The Patient Safety Act (2023) and the National Open Disclosure Framework provide support and a safe space to fully promote a culture of openness and transparency. When healthcare providers realise that something has gone wrong, there is an onus on them to immediately raise a flag. In parallel, they must feel safe and supported in doing so. Minsiter Donnelly said that it is a patient’s fundamental right to have full information about the healthcare they are receiving, even more so if something goes wrong. The Department of Health is currently working with stakeholders to implement the provisions of the Act. This Act, which is a landmark piece of patient safety legislation, will ultimately lead to better clinical and health outcomes for patients. It will also lead to better experiences for patients and help promote a culture of transparency and openness. This is essential if we want to create a “just culture” in our health services. The Act deals with a number of important patient safety priorities, including mandatory open disclosure of serious notifiable patient safety incidents, external notification to the regulator, and for the first time, the extension of HIQA's remit to the private healthcare system. The National Open Disclosure Framework which is going to be launched shortly promotes a clear and consistent approach to open disclosure across the whole health service following a patient safety incident or an adverse event. This new framework is an important step in creating a just culture in our health and social care services. It is important that we all come together and support the successful implementation of these two important initiatives to ensure the provision of the best possible care for patients along with a culture of openness, transparency, and respect for patients and their families.

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Mr Stephen Donnelly

Minister for Health and TD

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Ms Inna Ivanenko, Executive Director PUCF

 

Ms Iyna Rachynska, Foundation Advisor

Patients of Ukraine Foundation
Ms Inna Ivanenko, Executive Director PUCF
Ms Iyna Rachynska, Foundation Advisor

Key messages: Patients of Ukraine foundation is one of the biggest patient NGOs in Ukraine. Before the full-scale invasion it was a purely advocacy organization for access to treatments. The big war has broadened our activities significantly and now we organize responses on the challenges which face patients and the healthcare system due to the war. What support would be useful? International expertise, the best practices which could develop our treatment strategies, good governance for hospitals, involving patients in decision-making processes. Big gap we have in providing emergency help with medicines and medical devices to the hospitals which help wounded people. The money which we collect is not enough for the number of requests from the hospitals is much more than the possibilities to respond to them. Innovative treatment is practically not accessible in Ukraine. There is a need in such drugs for oncology and rare disease patients. Before the War, Ukraine had a big clinical trials presence - Returning clinical trials to Ukraine is a crucial and depends on the pharmaceutical industry to return.

Panel 1 Innovation Moderator x 5 Panellists [Medicines, Devices, AI]

Mr McMahon informed the meeting that Ms Siobhan O Sullivan exec Director of RIA was unable to attend the conference due to an unexpected family commitment. He informed the panel that he had included Ethical Considerations that Ms O Sullivan had prepared, Ai is not perfect, and errors do happen. Therefor we need to protect the public and users of these systems, while regulation exists to protect patient confidentiality the point was made how credit rating companies do not have the same degree of oversight in the algorithms that produce peoples credit ratings that can have a big impact on every aspect of their lives. The presentation discusses the numerous benefits and ethical considerations of utilizing AI in healthcare. Some key benefits of AI in healthcare include disease detection, predictive analytics, remote monitoring, personalized treatment, administrative task automation, personalized medicines, telemedicine, disease management, improved patient engagement, and enhanced public health surveillance.Referring to this discussion document prepared in 2019 these projected benefits by 2026 must greater based on pace of AI applications since 2019, said Stephen McMahon. Key Recommendations: 1. Transparency and Accountability: To address ethical concerns, AI systems should be designed and operated transparently, with clear explanations of how they work and how they make decisions. Developers should be held accountable for any harm caused by the use of AI. This ensures trust and scrutiny in AI healthcare applications. 2. Fairness and Privacy: AI systems must be designed to avoid bias and discrimination and should protect the privacy and security of individuals' data. They should treat all individuals fairly and without prejudice, regardless of characteristics such as race, gender, or age. Proper consent and security measures should be in place to protect data. 3. Reliability and Safety: Reliability and safety are critical, especially when AI is used to control equipment, deliver treatment, or make decisions in healthcare. AI systems must undergo rigorous validation to ensure they are error-free and reliable. The quality of data used to train AI systems should be high, and continuous monitoring is essential to detect and correct errors. These recommendations focus on ensuring the responsible and ethical use of AI in healthcare, emphasizing transparency, fairness, privacy, accountability, and safety. Adhering to these principles will help address ethical concerns while harnessing the benefits of AI in the healthcare sector. However Humanity does not currently live in an entirely ethical world and this is a challenge.

Top 10 artificial intelligence (AI) applications. Source: Accenture analysis. * “Value” is

Top 10 artificial intelligence (AI) applications. Source: Accenture analysis. * “Value” is the estimated potential annual benefit for each application by 2026; on US alone ** Orthopaedic surgery specific.         Source Artificial Intelligence: Power for Civilisation – and for Better Healthcare Denis Horgan  et-al Public Health Genomics 2019;22:145–161 DOI: 10.1159/000504785 Published online: December 13, 2019

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Mr Martin Curley

Professor of Innovation,

Maynooth University

Martin Curley
Prof. of Innovation, Maynooth University

Fairness and Privacy: AI should be designed to prevent bias, safeguard individuals' data, and treat everyone fairly, regardless of attributes like race or gender. Robust consent and security measures are vital for data protection. Reliability and Safety: Rigorous validation of AI systems is essential, particularly when they control equipment, treatment, or decision-making in healthcare. High-quality training data and continuous monitoring are necessary to ensure reliability and error correction. These recommendations promote the responsible and ethical application of AI in healthcare, focusing on transparency, fairness, privacy, accountability, and safety. While striving for ethical AI, it's acknowledged that the world faces ongoing challenges in achieving this goal. Making a choice starts a chain reaction – let’s leapfrog in Ireland to build a new health system around a digital personal health record.

Helene Dingreville

Senior Director Data Science and AI, Carelon Global Solution

Speaking on the panel, she said that "It is critical to have diverse teams to ensure reduced inherent bias from Generative AI models." "We know more about our cars than ourselves, we need to use advances in technology to remedy these aspects and ensure better health for all."

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Helene Dingreville

Senior Director Data Science and AI, Carelon Global Solution

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Ms Eibhlin Mulroe

CEO of Cancer Trails Ireland

Eibhlin Mulroe
CEO of Cancer Trials Ireland

Speaking on the panel, Eibhlin Mulroe (CEO of Cancer Trials Ireland) said that there was a need for solidarity and collaboration nationally and globally to deliver more clinical trials and research.

David Mulqueen

Technical Director Beacon Hospital 

David Mulqueen Technical Director Beacon Hospital shared experience on use of AI and gave some key messages: 1.The patient discharge process in hospitals is a complex process and requires extensive. clinical expertise and skills to manage correctly. 2.Recent advancements in AI text processing, can allow a hospital to use historical data to create an AI clinical support tool to help manage the discharge process. 3.The AI tool can accurately predict the probability of patient discharge of 200 patients in less than 1 minute. This same assessment could take a clinician an entire shift to complete. AI in healthcare is useful now, and it’s time to start reaping the benefits for the patient and the hospitals.

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David Mulqueen

Technical Director Beacon Hospital

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Captain Niall Downey

Owner Framework Health

Captain Niall Downey
Owner Framework Health

Captain Niall Downey shared his experiences of patient safety: "Error is inevitable in any human endeavour so it’s nothing to be ashamed of Healthcare still predominantly treats error with a Name, Blame, Shame, Retrain approach ( eg Whistle-blowers) while other safety Critical industries have a “Just Culture” approach. Evidence shows aviation has made a 90% plus improvement in fatalities whereas healthcare has stagnated for the last 50 years we have been recording outcomes due to adverse. Warrens paper was a follow up showing that Irelands figures are the same as other countries and showed no change in the 5 years between the studies."

Warren Connelly

Led Investigator INAES 2

Between 2009 and 2015, the prevalence of adverse events has remained similar in the public Irish healthcare system. Many of these adverse events are preventable and due to errors in systems. Recommendation: - Combining evidence based strategies (like the National Clinical Programs) and building capacity within our healthcare service many of these adverse events may be preventable.

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Warren Connolly

Led Investigator INAES 2.

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Mary Vasseghi

Patient Advocate - RGN, RM, BSc, MBA

Mary Vasseghi
Patient Advocate - RGN, RM, BSc, MBA

Healthcare practitioners: Prioritise patient safety and patient engagement. Patients: Safety starts with you. Be an active partner in your healthcare.

Ms Ciara Kirke

Clinical Lead, HSE National Medication Safety Programme (HSE QPSD)

Knowing your medicines, checking the details, and asking, engaging with healthcare professionals around your medicines is very important. Keeping a list of your medicines and bringing it to healthcare appointments helps you and healthcare professionals manage and keep track of your medicines. Person-centred medicines reviews with shared decision making facilitated by pharmacists working in GP practices in the iSIMPATHY project delivered substantial benefits. Reviews improved patient understanding, safety and wellbeing, GP satisfaction and saved more money through reducing inappropriate medicines and avoiding adverse drug reactions than the service costs. Patients nationally need this service to reduce harm and improve the quality of prescribing and this requires government investment, with a return on that investment.

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Ciara Kirke

Clinical Lead, HSE National Medicines Programme, QPSD

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Debbi Onolememem

 

Patient Voice & Advocate of Sickle Cell Society Ireland

Debbi Onolememem
Patient Voice & Advocate of Sickle Cell Society Ireland

Sickle cell anaemia - commonly in Afro Caribbeans - is a hereditary blood condition affecting the red blood cells causing them to become a sickled shape and therefore more likely to clot and trigger a sickle cell crisis. This is an emergency. The IPA supported my letter & helped to facilitate some of the changes we will see in sickle cell management in emergency departments. Dr Colm Henry & Dr Gerry McCarthy have acknowledged sickle cell should be in triage category 2 to ensure early review in ED. Dr. McCarthy has requested the IAEM Clinical Guidelines Committee to publish a Guideline addressing the management of sickle cell crisis. This will provide evidence-based recommendations for healthcare professionals.

Sinéad O’Loghlin 

Co-Founder and Managing Director of Karst

There is a robust regulatory framework in place for the regulation of private and voluntary nursing homes. The regulator – the Chief Inspector of Social Services – is very active in the market and the regulator places significant emphasis on the safety and welfare of residents. The Care & Welfare Regulations provide a transparent and effective system for the reporting of alleged abuses of vulnerable residents in private and voluntary nursing homes, to include a 3 working day timeframe within which any abuse of a resident must be reported. Thereafter, a statutory investigation is carried out and the report is submitted to the Chief Inspector of Social Services – which protects and vindicates resident’s rights and safety. Private and voluntary operators of nursing homes face significant funding challenges to ensure they maintain patient safety compliance given the underfunding of the Fair Deal Scheme.

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Sinéad O’Loghlin 

Co-Founder and Managing Director of Karst

 Irish Patients Association  
2023 Recognition Awards

Patient Safety Advocate Award: Recognizing an individual who has demonstrated exceptional dedication and advocacy for patient safety, achieving change. Posthumous Late Ms Remi Onolememem Patient Safety Leadership Award: Acknowledging a healthcare leader who has shown exemplary leadership in championing patient safety, fostering a culture of safety, and driving organizational change to prioritize patient well-being. Dr Colm Henry Chief Clinical Officer HSE Medication Safety Leadership Award: Acknowledging a healthcare leader who has demonstrated exceptional leadership in prioritizing medication safety, implementing best practices, and fostering a culture of safety within their organization or healthcare system. Mr Tim Delaney Pharmacist Patient Advocate Change Agent Award: Recognizing champions of patient rights and safety, this award recognises impactful change-makers who promote patient-centered care, drive policy reform, and inspire patient centered care. Mrs Mary Vasseghi Patient Advocate Patient Safety Research Award: The Patient Safety Research Award honours researchers in the healthcare field who have advanced patient safety through research. This award celebrates those whose work can make a lasting impact on patient safety. INAES I INAES II Dr Natasha Rafter Dr Warren Connelly International Solidarity Awards Recognizing an organization or individual that has shown unwavering solidarity and support for healthcare workers and patients in areas of conflict, by providing resources, training, and advocacy to ensure patient safety and improve healthcare outcomes in such challenging environments. Patients of Ukraine Foundation Dr Natalia Konashko

Thank you to our Sponsors

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ADVOCATING WITH YOU AND FOR YOU

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