UNIFIED Patient Advisory Group

The UNIFIED project seeks to transform healthcare innovation by integrating the insights and experiences of patients across all phases of research, development, and implementation. A cornerstone of this commitment is the establishment of the Patient Advisory Group (PAG), composed of 15 lived experience patients and caregivers from outside the consortium, representing one of the UNIFIED medical domains: Paediatric Radiation Oncology, Lung Cancer, Parkinson’s Disease, Obesity, or Juvenile Idiopathic Arthritis.

1.     Purpose and Objectives

The PAG was formed to maximise patient involvement throughout the project, and it will play a pivotal advisory role in ensuring that the patient voice shapes project outcomes and deliverables. Their input will directly inform the development of the UNIFIED framework, guidelines, and measures used to capture what truly matters to patients in clinical studies, enhancing the design, usability, and accessibility of digital health innovations.

At its core, the PAG is designed to:

• Embed the patient-centred perspective across all project activities, ensuring that patient preference information, experience data, and insights systematically inform all stages of work, particularly in the development and validation of patient-centred clinical study endpoints and digital health technology (DHT) measures, and support a harmonised, internationally aligned approach.

• Advise on study design, assessment criteria, and usability of tools, methods, and frameworks developed throughout the project, contributing to the delivery of the UNIFIED Framework with clear guidelines, standards, and consensus-based recommendations.

• Share knowledge and support cross-national learning, aligning project outputs with the needs and priorities of patients across different healthcare systems.

2.     Composition of the PAG

The UNIFIED PAG consists of 15 members representing a wide geographic range, including Canada, the USA, Norway, Spain, the Czech Republic, Germany, Sweden, the UK, Greece, and the Netherlands, as well as a diverse spectrum of treatment pathways and diseases such as obesity, juvenile idiopathic arthritis, lung cancer, paediatric radiation oncology, and Parkinson’s disease.

Country	PAG members	Disease areas
Canada	2	Obesity, Juvenile Idiopathic Arthritis
USA	1	Lung Cancer
Norway	2	Lung Cancer, Obesity
Spain	2	Paediatric Radiation Oncology, Parkinson's Disease
Czech Republic	1	Obesity
Germany	2	Paediatric Radiation Oncology, Parkinson's Disease
Sweden	1	Juvenile Idiopathic Arthritis
UK	2	Lung Cancer, Paediatric Radiation Oncology
Greece	1	Obesity
Netherlands	1	Parkinson's Disease

Table 1. Geographic and disease representation of PAG members

This diversity enriches the group with a wide range of patient experiences, ensuring representation across different healthcare systems and patient priorities. Many members bring extensive expertise in advocacy, drawing on years of active involvement in patient organisations, and previous participation in EU-funded research projects, strengthening the group’s collective knowledge and impact.

3.     Role and Responsibilities

PAG members will engage in different project activities such as:

• Induction meeting: An onboarding session to clarify roles, responsibilities, and contributions.

• Regular online meetings: PAG members participate in online meetings to discuss ongoing project activities and provide feedback on deliverables. These meetings serve as a key forum to guide and embed patient-centred approaches across the project.

• Annual General Meetings (AGMs): PAG members engage in AGMs both online and in person.

• Ad-hoc meetings: Engage in additional meetings with consortium partners for specific project input.

• Workshops and webinars: Participate in thematic co-creation sessions to explore key outputs.

• Review of project materials: Provide feedback on internal documents to ensure relevance, accessibility, and patient-centric design.

Through continuous engagement, the PAG will ensure that the patient voice is integrated across the UNIFIED project.

4.     Onboarding Meeting - 31st March 2026

The UNIFIED PAG held its onboarding meeting on 31 March, convening all members online for a comprehensive introduction to the project and its patient-centred mission.

The session provided an opportunity to:

• Present the project’s overarching goals, structure, and roadmap.

• Clarify the roles, expectations, and responsibilities of PAG members, including their advisory and collaborative functions.

• Start building connections and engagement among members, creating a strong foundation for ongoing collaboration.

• Facilitate the first direct interaction between PAG members, project co-leads, and the other patient organisations participating in the project.

During the meeting, members shared their enthusiasm, commitment, and readiness to contribute insights drawn from their diverse lived experiences and perspectives. PAG members expressed excitement about the project’s ambitious vision, particularly the focus on harmonising patient preference information, clinical outcomes, and digital health data, areas that have existed in silos.

They also emphasised the significance of translating this vision into practical guidance, including clear standards, recommendations, and guidelines that can be directly applied in practice.

Several members remarked on how meaningful it is to be part of a process where patient voices are embedded at every level of decision-making, reinforcing that this work is not just theoretical but building a tangible, patient-centred future.

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Some Quotes from the PAG Members During the Onboarding Meeting

‘’I’m especially drawn to the idea of harmonising patient preference information, clinical outcomes, and digital health data because for so long, those things have existed in silos! I love that this isn’t just theoretical as it’s focused on creating clear guidelines, standards, and recommendations that can actually be used! This feels like we’re building a future where patient voices aren’t an afterthought as we’re embedded into every level of decision-making and getting to be part of something that is building that future is incredibly meaningful to me!’’

‘’I’m especially excited about the focus on defining what actually matters to patients like me because sometimes what’s “clinically significant” isn’t what’s life-changing in real life and bringing that perspective into research and decision-making is powerful.’’

‘’It is truly an honour to be part of this group alongside such thoughtful and committed patient and caregiver partners. The perspectives you each bring are not only valuable, they are essential to ensuring that this project reflects what genuinely matters in people’s lives. I look forward to learning from you and working together to help shape outcomes that are meaningful, equitable, and grounded in real-world experience.’’