World Patient Safety Day 2023

Can you tell us a bit more about yourself and your role within SafePolyMed?

Together with Prof. Dr. Julia Stingl and Jason Radermacher, we are taking the lead in WP2 on the UKA side, especially in compiling the patient-reported outcomes for the Delphi Process. As a biologist from the field of pharmacology and as a data scientist, it is my task to analyse the side effect reports from patients and thereby form a basis for the resulting Delphi Process. This is done in order to create an item catalogue that is as complete as possible and that reflects the patient's problems well, with which the patient can ultimately comprehensively assess his own situation with regard to his polymedication.
Classical statistical methods as well as AI tools are used in this process.

This year, the theme of World Patient Safety Day is 'Engaging Patients for Patient Safety.' Why do you think it is essential to involve patients in current research endeavors and clinical practices?

In summary, involving patients in research and clinical practice is not only ethical, but also leads to better health outcomes, higher patient satisfaction and safer, more patient-centred care. It recognises patients as active participants in their own health journey and values their contribution to shaping the future of healthcare. The theme of World Patient Safety Day, "Engaging Patients for Patient Safety", highlights the critical role patients play in ensuring their own safety and the overall quality of healthcare.

What would you consider effective strategies for engaging patients in healthcare decision-making and research processes?

In my opinion, the following strategies can be highly effective for engaging with patients:

• Educate patients and inform them about decisions and the reasons for them
• Establish advisory boards and patient portals for the best possible exchange, to facilitate communication and offer support
• Seek constantly feedback as healthcare providers
• Promote health literacy
• Be transparent with patients

And of course:

• Continuous improvement

If you could envision a brighter future for patients’ safety, what would your greatest wish be?

When I imagine a better future for patient safety, my greatest wish would be for a healthcare system that sets the following priorities.

Universal patient-centred care: Every patient, regardless of their background or circumstances, receives care that is not only safe but also deeply patient-centred. This means that healthcare is tailored to individual needs, preferences and values.

Empowered patients: Patients are educated, empowered advocates for their own health. They actively participate in their healthcare, confidently ask questions and make informed decisions.

Data-driven decision-making: Healthcare providers and researchers use comprehensive data and innovative technologies to make decisions. This data also incorporates patient feedback, leading to continuous improvement in the quality and safety of care.

Can you tell us a bit more about yourself?

My name is Jenny Camaradou, and I am a dual UK/EU (Greek) national. I am a trained Patient Expert, a fellow of EUPATI, the European Patients’ Academy, and an alumna of EURORDIS, representing patients across the EU. I serve as a patient advocate in various areas, including the EAN (European Academy of Neurology) Working Group on Autonomic Nervous System Disorders, and I am a patient ambassador for the EU region in the OneNeurology Global Partnership initiative, which encompasses more than 400 neurological and neurodegenerative conditions. Additionally, I hold the role of being an assigned lay member on the UK NICE Covid-19 expert panel and have contributed to the COVID END evidence synthesis to aid decision-makers network, a Q&A partner to the WHO looking at the full spectrum of pandemic management. I work as a freelance grant writer for a Dutch social not-for-profit organisation that is actively engaged in EU R&D health innovation projects, as well as in knowledge exchange. I am contemplating the possibility of pursuing my own doctoral study in the future!

What is your role in SafePolyMed?

Within SafePolyMed, I am supporting the team of clinicians and researchers in the consortium by providing consultancy to better embed patient concerns around the development of the core set of PROs for the project. I am also identifying and modifying the research questions for the development of the Delphi analysis itself, as well as practical issues around the implementation and delivery of the medication management centre and training materials. Members of my family have sustained life-threatening anaphylactic shock from different medications over the last 50 years on multiple occasions due to having systemic mast cell disease. I recognise the importance of working together with doctors, patients, and other stakeholders to support good, safe patient care and ensure a shared understanding of mutual issues and goals. This project provides a great opportunity to utilise some of the training I have undertaken so far to improve the research itself from a patient's point of view and enhance engagement.

This year, the theme of World Patient Safety Day is 'Engaging Patients for Patient Safety.' Why do you think it is essential to involve patients in current research endeavors and clinical practices?

Involvement and engagement are terms often used interchangeably in various contexts, sometimes carrying country-specific interpretations. It is crucial to engage patients in research to ensure that the right questions are asked when identifying and prioritising research topics. Models such as the James Lind Alliance Priority Setting Partnership in the UK, with a tradition dating back to the 19th century, highlight the importance of involving citizens in research. Initiatives like EUPATI provide training for patients to become experts, contributing to the design and delivery of trials and healthcare system reform.

Incorporating end-service users, including patients and their families/carers, into clinical practice can enhance adherence, promote service redesign through partnerships, and enable better collection and analysis of data to identify patient cohorts with specific risk factors. SafePolyMed exemplifies how gathering real-life patient data and understanding their concerns about clinical trial protocols supports data-driven decision-making for healthcare quality improvement.

Regarding patient safety and safety events, involving patients in their own safety and building trust at the organisational safety level through strategic partnerships with patient organisations, social prescribers, and hospital providers is essential for sustainability. Involvement in research and clinical practice can employ various engagement approaches, such as focus groups, surveys, case studies, or collaborating with a patient or community advisory board. These methods facilitate two-way conversations between patients from diverse backgrounds, leading to the co-creation of materials, resources, and tools for enhancing awareness, health promotion, and inclusion.

Patient engagement and public involvement can help researchers and clinicians understand patient experience and its impact on daily life so that the work becomes more relevant for the end user.

What would you consider effective strategies for engaging patients in healthcare decision-making and research processes?

In any organisational change, people, their beliefs, values, and behaviours, as well as how they collaborate, are crucial. Embracing digital inclusion, equality, and diversity must involve patients as equal partners to advance patient safety. Healthcare should encompass holistic and interdependent aspects, focusing on human processes within the system. A comprehensive approach is essential to ensure patients experience safety throughout the healthcare system, the organisation itself and the people working in these.

Effective patient engagement should combine shared decision-making to work across traditional boundaries. Patient safety goes hand in hand with quality improvement in health services, so there is a need for a structured, open, collaborative approach. Leveraging external data analytics, such as patient complaints from services, can add value and drive change.

Adapting local practices to reduce silos and duplication in research and management is essential. Changes in behaviour are not limited to patients alone but also extend to those working with them. Organisational development and research management must prioritise patient engagement and public involvement as key considerations.

If you could envision a brighter future for patients’ safety, what would your greatest wish be?

Co-governance goes beyond co-creation. For it to be effective, members of the public and citizens need to have easy access to understandable data and information about their communities and populations. They also need to understand how patient safety is achieved and how it affects them. AI technology can further improve clinical decision-support systems and eliminate human errors. Despite progress, especially due to the rise of telemedicine during the Covid-19 pandemic, more work is necessary to create partnerships to enhance patient safety.

Patient safety encompasses protection from potential harm, and the delivery of safe care by the right individuals at the right time. Establishing a common language and approach among stakeholders is crucial. Collaborative projects can enhance efficiency and align Patient-Reported Outcomes (PROs) with Clinical-Reported Outcomes (CROs) more precisely, addressing patient safety issues. Engagement should not be a tick box exercise; it should involve working with patients in joint partnership. Individuals must have sufficient information to participate in decisions about their care, presented in plain language devoid of technical jargon.

In my opinion, clinical trials and new medications should consider the side effects that a patient has experienced from similar drugs in the past, as well as how these may affect different systems and patients' ability to manage symptoms. It would be very helpful to receive personalised advice that takes into account for example pharmacokinetics and other factors. The best solution would be medication that is tailored to my unique pharmacogenomics profile, with adaptable dosages, which takes into account other variables that influence absorption including for example RWD (real world data), the influence of hormones and that considers epigenetic changes in more detail. By using technology and data-driven insights, we could potentially better support the management of complex conditions such as MCAS, mast cell activation syndrome which involves over 300 mediators that can affect different body systems in different ways due to adaptive immunity changes.

Projects like SafePolyMed hold promise in bringing various stakeholders together to address patient safety comprehensively. They can support data-driven quality control and establish a common approach that promotes research in polypharmacy, pharmacovigilance, and patient safety.

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Can you tell us a bit more about yourself and your role within SafePolyMed?

As a member of LeukaNET's advisory committee, I support the team in creating a Patient Engagement Hub. This involves engaging relevant patient communities and developing training material for citizen empowerment in polymedication.

This year, the theme of World Patient Safety Day is “Engaging Patients for Patient Safety.” Why do you think is essential to involve patients in current research endeavours and clinical practices?

Each patient is unique, with their own values, culture, priorities, lifestyle, and life circumstances – and each patient is entitled to make informed decisions about their health. As researchers and clinicians, there is only so much we can do to ensure our patients' "safety." We can educate, provide up-to-date, evidence-based care, build relationships with our patients that encourage open communication, and offer ongoing support. However, ultimately, once a patient leaves the office, much of their care is in their hands.

It is up to the patient to take medication that is prescribed or implement lifestyle modifications. It is up to the patient to recognise and report any adverse symptoms or choose to attend follow-up appointments or reach out with questions, etc. In many instances, patients are the only ones who can keep themselves 'safe.'

The days of paternalistic medicine are by and large over. As clinicians and researchers who strongly desire to keep our patients as healthy and safe as can be, we need to recognise and support our patients as they take the lead.

What would you consider effective strategies for engaging patients in healthcare decision-making and research processes?

I believe patient engagement begins most critically with a strong relationship and communication between the patient and provider. We cannot do our job and help patients as clinicians and researchers unless our patients talk to us. And if we want patients to talk to us, we have to make sure our patients know we are listening, we care, they can trust us, and they know we share the mutual goal of keeping our patients healthy and safe.

Regarding specific strategies -
Having continuous care with the same provider(s) enhances patient engagement. Ensuring that patients are provided with after-care support and access to clinicians should they have further questions is also crucial. Additionally, it is extremely important that providers know how to communicate information in patient-friendly terms so that the information is accessible. Developing this skill takes practice, as we are used to thinking and speaking in scientific terms.

If you could envision a brighter future for patients’ safety, what would your greatest wish be?

My greatest wish is for all patients and caregivers to feel empowered to ask important questions and take charge of their care to ensure safe outcomes.