Deliverable 6.5: Citizen science and terminology. Methodology

DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 1 | 41 Deliverable 6.5 Citizen science and terminology: Methodology HetERogeneous sEmantic Data integratIon for the guT-bRain interplaY DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 2 | 41 DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 3 | 41 EXECUTIVE SUMMARY This report explores the growing importance of citizen science and the critical need for clear, accessible communication of scientific concepts to non-experts. As citizen involvement in research increases, so does the need to ensure that terminology is not a barrier to participation. One key challenge is the development and use of simplified definitions that are understandable to a general audience without compromising scientific accuracy. To address this, the report proposes a structured methodology for the comprehensionbased appraisal of definitions by non-experts. This collaborative yet controlled process enables the evaluation of whether simplified terms truly support inclusive engagement. Central to this approach is the role of the terminologist, who acts as a bridge between domain experts and the public. Terminologists ensure conceptual accuracy, consistency, and clarity across definitions, adapting terminology to be both scientifically valid and accessible to non-specialist audiences. Their expertise is essential in developing terminology that meets the dual goals of precision and public understanding. Building on insights from Freitag and Pfeffer (2013), who emphasize the value of citizen perspectives, this report argues for a participatory, expert-guided approach to terminology validation. By integrating terminologists into the co-design of definitions and incorporating feedback from non-expert users, the process supports more transparent, inclusive, and effective communication in citizen science projects across Europe. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 4 | 41 DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 5 | 41 DOCUMENT INFORMATION Deliverable ID D6.5 Deliverable Title Citizen science and terminology: Methodology Work Package WP6 Lead Partner UNL Due date 30.08.2025 Date of submission 06.08.2025 Type of deliverable R Dissemination level PU AUTHORS Name Organisation Rute Costa UNL Margarida Ramos UNL Matilde Canelas UNL Ana Mouro UNL Chiara Lovati Observa Giuseppe Pellegrini Observa Federica Vezzani UNIPD Vanessa Bonato UNIPD Giorgio Maria Di Nunzio UNIPD Carlos Iglesias Losada (Internal reviewer) FEUGA Amalia Hafner Táboas (Internal reviewer) FEUGA Anna Romanovych (Contributor) UNIPD REVISION HISTORY Version Date Author Document history/approvals V0.1 04.04.2025 Rute Costa / Margarida Ramos First draft proposal/outline V0.2 18.04.2025 Chiara Lovati / Giuseppe Pellegrini Adjustments to the outline V0.3 21.04.2025 Ana Mouro / Matilde Canelas / Margarida Health Literacy and Access to Health Information: A Socio-Demographic Survey DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 6 | 41 Version Date Author Document history/approvals Ramos / Rute Costa V0.4 08.05.2025 Ana Mouro / Matilde Canelas / Margarida Ramos / Rute Costa Methodology used for the design of the survey (section 6) Adjustments to the survey: Health Literacy and Access to Health Information: A Socio-Demographic Survey (Annex 1); Typology and Types of Medical Documents (Annex 2) V0.5 08.05.2025 Ana Mouro Minor corrections in Section 5 and survey (Annex 1) V0.6 22.05.2025 Ana Mouro / Matilde Canelas / Margarida Ramos / Rute Costa Adjustments to the table of contents and references Minor corrections in Section 5 V0.7 26.05.2025 Federica Vezzani / Vanessa Bonato Future works and comments for the terminology used “survey” vs “questionnaire” (Section 6) V0.8 29.05.2025 Vanessa Bonato/ Federica Vezzani Added section on “Creation of a corpus of semi-specialized texts” V0.9 04.06.2025 Ana Mouro / Rute Costa Citizen Science (Section 2) V0.9 04.06.2025 Matilde Canelas / Margarida Ramos Section 3.1 What is communication? ; Section 3.2 What is the impact of “good” terminology in the communication process? V0.10 13.06.2025 Chiara Lovati / Giuseppe Pellegrini Stakeholders’ Typology (Section 4) V0.11 29.06.2025 Vanessa Bonato / Federica Vezzani Added paragraph to Section 9.1 V0.12 02.07.2025 Rute Costa Introduction Section 3.3 Specialized vs. simplified definition V0.13 03.07.2025 Matilde Canelas Methodology used for the design of the questionnaire script (Section 8); Selection of corpora for term extraction - PT (Section 9.1.5) V0.13 04.07.2025 Ana Mouro Preparing stakeholders before answering the questionnaire (Section 7) V0.13 07.07.2025 Rute Costa / Margarida Ramos Workflow architecture to apply the survey and the questionnaire (Section 5) V0. 13 08.07.2025 Giorgio Maria Di Nunzio Minor fixes and suggestions V0.13 08.07.2025 Federica Vezzani Minor modification to the beginning of section 9.1 DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 7 | 41 Version Date Author Document history/approvals V0.14 16.07.2025 Costa, Rute / Mouro, Ana / Canelas, Matilde / Ramos, Margarida Document structure review (Section 9 → Section 8.3) Annex 3 (Table supporting Section 8.3.2) Section 5: review of steps description Replace Workflow architecture by Workflow description Workflow diagram (Section 5) Executive summary Future work - last paragraph Conclusions (Section 10) Text and references review (section 9) V0.14 17.07.2025 Federica Vezzani Few suggestions for clarification in particular for section 3.2 V0.14 17.07.2025 Margarida Ramos References and final formatting V0.15 24.07.2025 Rute Costa / Margarida Ramos / Matilde Canelas / Ana Mouro Review of V.014 1. Added text to the Introduction 2. Section 7 and Section 8 interchanged 3. Added Table of abbreviations 4. Revision of the whole text V0.15 25.07.2025 Carlos Iglesias Losada, Amalia Hafner Táboas Internal review of the V0.15. V0.16 31.07.2025 Margarida Ramos Applying editions suggested by the internal reviewers. V0.16 31.07.2025 Carlos Iglesias Losada, Amalia Hafner Táboas Final internal revision of the V0.16 V1.0 01.08.2025 Anna Romanovych Finalization of the deliverable. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union. Neither the European Union nor the granting authority can be held responsible for them. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 8 | 41 Contents 1 Introduction .......................................................................................................... 11 2 Citizen Science .................................................................................................... 13 2.1 Introduction to Citizen Science: Definition and Evolution .............................. 13 2.2 Citizen Science: A Two-Way Approach ......................................................... 13 2.3 Conclusion: Future Directions in Citizen Science ......................................... 14 3 Understanding Communication and Terminology Use in Health Settings .... 15 3.1 What is Communication? .............................................................................. 15 3.2 What is the Impact of “Good” Terminology in the Communication Process? 15 3.3 Specialized VS Simplified Definitions ........................................................... 16 3.4 Validation of Terminology Process ................................................................ 17 4 Stakeholders’ Typology ...................................................................................... 18 4.1 Experts .......................................................................................................... 18 4.2 Non-Experts .................................................................................................. 18 5 Workflow Description .......................................................................................... 19 6 Methodology Used for the Design of the Survey ............................................. 23 6.1 Introduction ................................................................................................... 23 6.2 Survey Structure ........................................................................................... 23 6.3 Question Types and Justification .................................................................. 23 6.4 Sections Overview ........................................................................................ 24 6.5 Ethical Considerations .................................................................................. 24 6.6 Limitations ..................................................................................................... 25 6.7 Conclusion .................................................................................................... 25 7 Methodology Used for the Design of the Questionnaire Script ...................... 26 7.1 Introduction ................................................................................................... 26 7.2 Objectives ..................................................................................................... 26 7.3 Selection of Corpora for Terminological Data ............................................... 26 7.3.1 Selection of Terms and Definitions ............................................................ 26 7.3.2 Overview of Corpora and Creation of a Corpus of Semi-Specialized texts 27 7.4 Participant Assignment ................................................................................. 29 7.5 Questionnaire Script ..................................................................................... 29 7.6 Data Analysis ................................................................................................ 30 7.6.1 Quantitative Analysis ................................................................................. 30 7.6.2 Qualitative Analysis ................................................................................... 31 7.7 Practical Relevance and Future Application ................................................. 31 DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 9 | 41 8 Preparing Stakeholders Before Answering the Questionnaire ....................... 32 8.1 Introduction ................................................................................................... 32 8.2 Adapting Communication to Support Informed Participation ........................ 32 8.3 Pilot Testing and Feedback Loops ................................................................ 32 8.4 Continuous Support and Follow-Up .............................................................. 32 9 Future Work ......................................................................................................... 33 10 Conclusions .................................................................................................... 34 References .................................................................................................................. 35 Annexes ....................................................................................................................... 41 List of Tables Table 1 Creating a Self-Generated Identification Code (SGIC). ................................... 25 List of Figures Figure 1 Workflow description. ..................................................................................... 22 DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 16 | 41 In patient-oriented contexts where communication occurs among individuals with diverse backgrounds, the use of appropriate terminology becomes particularly crucial. Inconsistencies heighten the risk of miscommunication for patients and non-experts, for whom medical terminology is often complex due to its specificity (Wermuth & Verplaetse, 2019). Hence, the use of adequate and precise terminology – derived from denominative harmonization and clear definitions – minimizes ambiguity in healthcare communication, fostering greater precision in the exchange of information among experts, patients, and non-experts. 3.3 Specialized VS Simplified Definitions According to ISO 1087:2019, a definition is a “representation of a concept by an expression that describes it and differentiates it from related concepts.” This means that a definition is a precise linguistic tool used to represent the concept within a specific domain, while also making clear how it differs from other similar concepts as part of a concept system. The ISO standard emphasizes that definitions must be systematic and concept-oriented, which is essential for building coherent and interoperable terminologies across disciplines and languages. In terminology work, especially in technical and scientific fields, definitions serve a vital function: they ensure that communication is clear, consistent, and unambiguous. A wellformed definition does more than simply describe what something is. It sets boundaries around the concept by identifying its essential characteristics and distinguishing it from related concepts. This is what sets a definition apart from a general explanation or description2. Different types of definitions are used to address different audiences within the same domain. Specialized definitions are intended for experts and use precise, technical language, whereas simplified definitions aim to make concepts accessible to non-experts through clearer and more general wording. ISO TC 37 704 (2022) states that when writing a definition, the target audience has to be taken into account. ISO 704 (2022, p. 33) identifies three types of different audiences: i. Experts in the domain or subject in question, already familiar with the relevant conceptualization patterns and who can be familiar with the designations. ii. Experts from other domains or non-experts who can be familiar with the designations and the concepts. iii. Non-experts who are unfamiliar with both the designations and the concepts of the domain or subject. We consider that audience type (i) consists of experts, type (ii) of informed users, and type (iii) of non-experts. Types (i) and (ii) are the target audiences for specialized definitions, whose purpose is to convey the exact meaning of a concept within a particular field. In contrast, non-experts (type iii) require definitions that make the concept accessible to a general audience. This is known as a simplified definition. Simplified 2 For the purpose of this report, we will not go into the details of the differences between “simplified definition”, “explanation” and “description”. This will be tackled as future work. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 17 | 41 definitions often use plain language techniques, minimize or clarify domain-specific terms, and convey complex concepts in an accessible way. 3.4 Validation of Terminology Process Clear and validated terminology is essential for effective communication within a multilingual and multidisciplinary context. The consistent use of terms, definitions, and their multilingual equivalents ensures the accuracy of research, policymaking, and health communication. To guarantee quality in terminology work, a structured validation process is necessary. This approach facilitates the creation of precise yet accessible definitions, aiming not only to support expert understanding across different cultural backgrounds, but also to make specialized knowledge more accessible to non-experts. In doing so, it contributes to the promotion of citizen science and the broader dissemination of scientific information across society.3 The process begins with compiling a corpus based on predefined parameters that consider the communication setting, including participants, medium, purpose, genre, location and time (Costa et al., 2024). Next, candidate terms are identified through corpus analysis. This process enables terminologists to become familiar with domain-specific concepts and to recognize relevant variants, such as “gut-brain axis” and “brain-gut axis.” However, this analysis may also reveal quasi-synonyms or distinct concepts. In these latter two cases, it means there are two distinct terms representing two separate concepts, rather than one term with several variants representing a single concept. To address these distinctions, expert engagement is needed, bringing in specialists with deep knowledge and experience to actively contribute to discussions and decision-making. Their role is fundamental in validating terms, concepts, and definitions. Finally, the concept is defined and integrated into a structured concept system. This includes establishing relations to broader and narrower terms, identifying synonyms, and validating the entry with domain experts. The process is iterative: expert feedback and corpus reanalysis are used to refine the definition and ensure alignment with current scientific understanding and terminology standards. By grounding terminology in both linguistic evidence and expert consensus (Costa, 2013), this approach supports the development of reliable terminology resources, vital for policy coherence, scientific communication, and multilingual harmonization. 3 Within the present project, this process is necessarily iterative: expert feedback and non-expert feedback are integrated to assess the clarity and usability of simplified definitions, as stated in Section 5. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 18 | 41 4 Stakeholders’ Typology In order to effectively validate terminology within the HEREDITARY project, it is important to recognize and differentiate the various stakeholders involved. Different stakeholders bring distinct perspectives, levels of expertise, and priorities, which can significantly shape the process needed to establish clear and consistent terminology. To guide and structure the validation process, we apply a stakeholders’ typology that categorizes participants according to their relationship with and use of medical terminology. This typology will enable us to: i. Identify who should be consulted and involved at each stage. ii. Tailor communication and validation strategies to stakeholder expertise. iii. Balance technical accuracy and domain relevance with broader communicative needs. The typology adopted for this project includes the following key stakeholder categories: a. Medical Experts (Professional Users). These are individuals with specialized knowledge and routine use of medical terminology, such as clinicians, biomedical researchers, and healthcare professors and professionals. Their input ensures that terms are medically accurate and aligned with current professional standards and practices. b. Non-Expert or Incidental End Users. This group includes patients, caregivers, administrative staff, policy experts, and laypeople. While they are not the primary users, their understanding of terms can significantly affect communication and decision-making. Their perspective is essential to identify ambiguous, overly technical, and inaccessible terminology. The following sections will describe in greater detail the stakeholders identified. 4.1 Experts i. Clinicians (physicians, nurses and other health professionals): Clinicians are highly skilled health workers. Together with nurses and other health professionals, they “utilize a recognized scientific knowledge base and have the authority to direct the delivery of personal health services to a patient” (Institute of Medicine (US), 1994). ii. Health researchers (biotechnologists, health data researchers): Health researchers are individuals who carry out academic or scientific research in fields related to health and health data. 4.2 Non-Experts i. Patients or patients’ association representatives: Patients are individuals who receive medical care or treatment from healthcare professionals due to illness, injury, or other health-related issues. Patients’ associations are organizations formed to support and advocate for individuals affected by specific medical conditions. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 19 | 41 ii. Caregivers: A caregiver is someone who takes care of a person who is ill or disabled either as a family member or friend, or as a job. iii. Health institution administrators: Health institution administrators are professionals responsible for managing the operations of healthcare facilities such as hospitals and clinics. iv. Policy-experts: Policy-experts can be local government members, municipal or ministry representatives, social workers, etc. v. Laypeople: Laypeople are individuals who are not part of an association or a specific profession or specialty, and they do not have specialized knowledge or expertise in a particular area. They are ordinary citizens and members of the public who are not professionals or experts. By distinguishing between expert and non-expert users of medical terminology, this typology supports a context and expertise-sensitive validation process, ensuring that terminology serves both professional precision and communicative clarity. 5 Workflow Description The workflow for validating both specialized and simplified definitions is organized into several steps, some of which are further divided into specific tasks, as outlined below. Among these, Step 6 plays a particularly important role, as it includes the implementation of a survey (see Annex 1) and a subsequent questionnaire (see Section 7), which serves to assess the comprehensibility of the definitions among lay participants and to incorporate their feedback into the overall validation process. Step 1: Selection of relevant terms for the collaborative dynamic component To support the development of the collaborative dynamic component, relevant terms are carefully selected from the WP3 medical terminology database. This ensures consistency and accuracy in the use of domain-specific vocabulary throughout the project. Step 2: Systematic identification of knowledge-rich contexts In this phase, we will carry out the following actions using the terms identified through the methodology applied in Step 1: i. Conduct a comprehensive search for knowledge-rich contexts (KRC)4. ii. Identify and extract specialized textual definitions contained in the corpus5. iii. Cross-check the extracted data with terminological resources (TR). The results will be analyzed to identify suitable contextual specialized definitions, which will be revised as necessary before submission to experts for validation. Step 3: Validation of specialized definitions 4 "By knowledge-rich context, we designate a context indicating at least one item of domain knowledge that could be useful for conceptual analysis. In other words, the context should indicate at least one conceptual characteristic, whether it be an attribute or a relation." (Meyer, 2001, p.281). 5 The method used to compile the corpus is described in the deliverable D3.4 for Task 3.3 of WP3 (Costa et al, 2024). DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 20 | 41 Experts and clinicians will thoroughly evaluate the specialized definitions, assessing and rating them based on clarity and accuracy. To ensure consistency and reduce variability in interpretation, comprehensive guidelines will be provided to all experts prior to the evaluation process. Step 4: Writing of simplified definitions Based on the validated results from Steps 2 and 3, terminologists will proceed to draft simplified definitions. These definitions are intended to clearly and accurately convey the concept in a language that is accessible to non-expert audiences, thereby enhancing comprehension and usability across diverse user groups. The simplified definitions will be carefully reviewed to ensure they maintain the essential technical accuracy while improving clarity. Step 5: Validation of simplified definitions by experts Experts and clinicians will carefully review the simplified definitions, assessing and scoring them based on their clarity, accuracy, and overall effectiveness in conveying the intended meaning. Step 6: Validation of simplified definitions via non-expert feedback Non-experts will provide feedback on the simplified definitions previously reviewed by experts, as stated in Step 5. The aim is to assess whether non-experts understand the defined concepts. To implement this step, non-expert participants will complete a questionnaire designed to assess their comprehension of medical terminology, as outlined in Section 7. This questionnaire builds upon the exploratory survey described in Section 6, which serves as a preliminary step toward developing tools to improve access to and understanding of health information. Clear and comprehensive guidelines will be provided to non-experts to make the task as straightforward as possible, while ensuring they feel comfortable, even if they do not fully understand a definition or are unsure how to respond. Step 7: Reformulation of the simplified definitions by terminologists In this step, the simplified definitions written by the terminologists in Step 4 are critically reviewed. The primary goal is to ensure that feedback, both from experts and nonexperts, has been thoroughly considered. This includes addressing potential ambiguities, redundancies, and inconsistencies, and making the necessary adjustments to enhance clarity and readability. At this stage, input from subject matter experts and target users is incorporated to ensure the definitions are appropriately adapted to the needs of their intended audience. Step 8: Validation of the reformulated simplified definitions by experts and nonexperts In this final step, experts and non-experts are expected to validate and confirm the accuracy of the rewritten simplified definitions. If any definitions require further improvement, Steps 7 and 8 will be revisited iteratively until all involved parties consider the definitions satisfactory. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 21 | 41 Step 9: Feeding FAIRterm6 Ultimately, Step 9 finalizes the simplified definitions, preparing them for integration into the FAIRterm database. 6 See Section 8 of Deliverable 3.4: Medical terminology (https://zenodo.org/records/14628022) DELIVERABLE 6.5 31 July 2025, V0.16 GA 101137074 22 | 41 Figure 1 Workflow description. DELIVERABLE 6.5 31 July 2025, V0.16 GA 101137074 23 | 41 6 Methodology Used for the Design of the Survey 6.1 Introduction The survey developed under Work Package 6 (WP6) of the HEREDITARY project – Health Literacy and Access to Health Information: A Socio-Demographic Survey (see Annex 1) – is an initial step toward designing a more detailed questionnaire that will allow us to develop tools for health information access and comprehension. This exploratory survey aims to understand knowledge, perceptions, and experiences surrounding health literacy, particularly focusing on how health-related information is accessed, understood, appraised and used by patients and caregivers, as well as conveyed by health experts. The results will contribute to the above-mentioned questionnaire, as well as to future interventions that enhance patient understanding and engagement with their own therapeutic process. Eligible participants are patients, caregivers, health professionals, health associate professionals, personal care workers in health services and health management and support personnel7 (see Section 4) aged 20 or older8. An informed consent form will be provided, informing participants that their contribution is voluntary and that all the information will be kept confidential. 6.2 Survey Structure The survey is structured into two sections (see Annex 1): (1) Socio-demographic Information and (2) Health Literacy and Access to Health Information. This organization mirrors the recommendations found in health literacy survey frameworks, particularly the European Health Literacy Survey Questionnaire (HLS-EU-Q) (Pelikan et al., 2019), and ensures a logical flow from background information to specific health literacy behaviors and digital engagement. The selection and ordering of questions aim to minimize cognitive load on participants, beginning with general demographic questions before advancing towards more specific health-related inquiries, an approach recommended to enhance respondent engagement and data quality (Holtom et al., 2022). This structure also allows a comprehensive understanding of how demographic factors influence health literacy and information-seeking behavior. 6.3 Question Types and Justification The survey predominantly applies closed-ended questions, including multiple-choice items and dichotomous (yes/no) questions. The use of closed formats is recommended to enhance reliability, facilitate standardized data analysis and reduce ambiguity in interpretation (Saris & Gallhofer, 2014). In questions regarding preferences or behaviors (e.g., sources of health information), multiple-response options are included to better reflect the multifaceted nature of information-seeking in contemporary health contexts. The phrasing of questions 7 The participation of different health workers is based on the international standard classification presented by the World Health Organization (Health Workforce – WHO Team, 2019). 8 WHO defines 'Adolescents' as individuals in the 10-19 years age group (WHO, 2025a). This survey is aimed at participants from the age of 20 and over. According to WHO, Young Adulthood starts at age 20 (2025a). DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 24 | 41 prioritizes simplicity and neutrality to minimize bias and maximize comprehension, particularly important when addressing populations with varying literacy levels. 6.4 Sections Overview Section I focuses on socio-demographic information, gathering data on several key background variables such as age (using five-year intervals)9, gender identity (offering inclusive options beyond binary categories), educational attainment aligned with ISCED 2011 classifications (UNESCO Institute for Statistics, 2012), place of residence, socioeconomic status, and professional background. These variables enable analysis of how social determinants relate to health literacy outcomes. Section II assesses participants' behaviors and self-perceptions regarding the reading, understanding, and seeking of health information. Given the variety of medical document types, we will provide stakeholders with a predefined typology (Annex 2). The ease with which individuals can access healthcare, a fundamental factor in health literacy, is also considered. The question design in this section drew heavily from the European Health Literacy Survey (European Health Information Portal, 2025) and similar health literacy tools. It also explores the role of digital technologies in accessing health-related information, reflecting the increasing relevance of eHealth literacy in citizen science projects (Prinzellner et al., 2022). 6.5 Ethical Considerations Participation in the survey is entirely voluntary, with no personally identifiable information collected. In fact, participants will be asked to create their own Unique Code (SGIC)10, by creating a code based on simple, memorable (but non-identifying) details. Table 1 presents the instructions participants will be given before answering the survey: 9 The age band presented in this study is based on the Age Group Code list presented by the World Health Organization (WHO, 2025b). 10 “Self-generated identification codes (SGICs) are strings of information based on stable participants’ characteristics. They are often used in longitudinal research to match data between time points while protecting participant anonymity”. (Little, et. al., 2021, p. 354). DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 25 | 41 Table 1 Creating a Self-Generated Identification Code (SGIC). Your Participant Code (SGIC) You will use this same code for future questionnaires To help us anonymously link your responses across different questionnaires, please create a personal code using the following format: ● The first two letters of the city where you were born ● The last digit of your birth year ● The last two letters of your favourite animal ● The digit that corresponds to the number of your siblings E.g.: If you were born in Copenhagen in 1986, if your favourite animal is a panda and if you don’t have any siblings, your code is: CO6DA0 Please write this code down and save it! ● Your Code: [ ____________________________ ] This method helps preserve anonymity while enabling repeat matching. Likewise, the survey includes a statement assuring participants of the ethical handling of their data (see Annex 1). This statement was written considering the guidelines presented in WHO’s Research Ethics Review Committee (ERC) (WHO, 2025c) and in ICPSR - Recommended Informed Consent Language for Data Sharing (ICPSR, 2025). Sensitive questions, such as those regarding income, include “prefer not to answer” options to ensure participants maintain control over their disclosures, in line with ethical guidelines for socio-economic research presented in the OECD Global Science Forum report (OECD, 2016). 6.6 Limitations Given its exploratory nature, the survey employs a non-random sample, which may limit generalizability. Even so, this initial survey represents an essential step in establishing foundational understanding, from which more robust and targeted tools can be developed. Online distribution may also exclude individuals with limited digital literacy or internet access — this is why in-person distribution will also be considered, to prevent barriers to full participation. 6.7 Conclusion This survey provides a robust framework for assessing health literacy and access to health information. By combining socio-demographic data with insights into health information practices, this methodology allows for a comprehensive analysis of the factors influencing health literacy. The findings from this survey can inform interventions and strategies to improve health communication and promote health literacy within the population. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 32 | 41 8 Preparing Stakeholders Before Answering the Questionnaire 8.1 Introduction Stakeholders’ engagement in research production is being increasingly recognized in the health field as a crucial contribution to improving data design, ensuring data quality and making scientific outputs more responsive to society’s needs (Boaz et al., 2018; Rix et al., 2020; Hall et al., 2024). To foster meaningful involvement, a strategy must be defined on how to involve stakeholders and prepare them to participate effectively. 8.2 Adapting Communication to Support Informed Participation Considering the stakeholder typology described in Section 4, questionnaires follow a stakeholder-centric approach, being adapted to the different literacy levels, and contexts. An introductory text is provided, presenting the HEREDITARY project and its goals, as well as an explanation of the purpose of the questionnaire. Visual aids, such as infographics, may be useful (Rix et al., 2020). This preparatory strategy promotes clarity, comprehension and motivates participation throughout the project (Elkins et al., 2011; Rüfenacht et al., 2021; Gulombic et al., 2024). Besides contact details for support, key ethical considerations (that is, information on informed consent procedures, data confidentiality and on how collected data will be used in the project outputs) are also provided. Ethical preparation is essential for public trust in health-related research (WHO, 2023). Communication channels may be face-to-face (in HSLs), online, or project channels, like the website, social media or newsletters. 8.3 Pilot Testing and Feedback Loops Before formal distribution, a pilot version of the questionnaire will be shared with a sample of stakeholders, in order to test, refine and ensure this tool’s robustness and reinforce the overall credibility of the research findings. Participants from both typology groups (experts and non-experts) will be asked to provide feedback and suggest improvements. Clarity, tone, length, and cultural appropriateness are some of the factors to be taken into account. This strategy is aligned with the best practices in inclusive citizen science recruitment and engagement (Sanz, 2020; Hidalgo et al. 2021). 8.4 Continuous Support and Follow-Up Participants will have access to support contact throughout the process. As this project involves long-term participation, regular check-ins and brief updates on findings will be shared and discussed through the project's communication channels to ensure transparency and interaction. To address common concerns, a FAQ page will be created and updated. In addition, social media will be used to maintain ongoing communication and keep participants informed. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 33 | 41 9 Future Work The developed survey and questionnaire represent a fundamental initial step toward understanding how knowledge concerning health-related topics is accessed and used by patients and caregivers. These instruments also offer relevant insights into how medical information is conveyed to patients and caregivers by domain experts. Future interventions, however, should take into consideration potential comprehension issues related to the survey and questionnaire questions and answers, particularly those that may arise due to the advanced age of patients affected by neurodegenerative disorders. Indeed, it is essential to adapt the language used, considering that older patients and caregivers could experience some difficulties in understanding concepts designated by terms such as ‘app’, ‘internet search engines’ and ‘social media’, which appear in the survey. Moreover, varying levels of health literacy do not represent the only factor to consider when developing patient-oriented materials. As a matter of fact, patients targeted by the HEREDITARY project may additionally experience different levels of cognitive decline. This variability is addressed in the terminology resource currently under development (WP3), which offers multiple explanations of medical concepts, each tailored to the cognitive needs of patients affected by a broad spectrum of neurodegenerative disorders (Bonato et al., 2025). A similar approach could be applied to the formulation of the survey and questionnaire questions and answers, as well as to the drafting of informed consent documents. Indeed, adapting these documents to the varying levels of cognitive decline among patients can maximize comprehension and ensure that the documents are more inclusive and patient oriented. Additionally, future work should include translating the survey and questionnaire into multiple languages (such as French, German, Italian, Portuguese, Spanish) to ensure broader accessibility and cultural appropriateness in diverse contexts. In parallel, a dissemination strategy will be developed to support the effective distribution of the survey and questionnaire among a broad and varied group of patients and caregivers, extending the reach and relevance of the instruments. Initially, the implementation will involve participants from the Health Social Labs, who will serve as a pilot group for preliminary testing of the instruments. Subsequently, broader dissemination will be pursued through a combination of strategies currently under consideration, e.g. distribution within healthcare institutions, via the HEREDITARY project website and social media channels, and through crowdsourcing platforms to reach a wider and more heterogeneous audience. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 34 | 41 10 Conclusions This report has underscored the critical importance of clear and accessible communication in the context of health research, particularly within citizen science initiatives across Europe. As public participation in health-related research grows, so does the responsibility to ensure that scientific terms, concepts, and procedures are communicated in a way that supports understanding, trust, and meaningful contribution. The proposed approach, which combines validation by experts with comprehensionbased validation of simplified definitions by non-experts, offers a practical framework for addressing this need. By actively involving non-experts in the assessment of terminology and placing terminologists at the core of the process, the method ensures both scientific accuracy and public accessibility. This is especially vital in health research, where miscommunication can lead to misunderstanding, disengagement, or even harm. Terminologists play a pivotal role in mediating between expert language and lay understanding, ensuring that health-related terminology is not only technically correct but also ethically and culturally appropriate. Their collaboration with researchers and citizen participants enhances the quality, inclusivity, and impact of health research communication. By adopting this methodology, health research projects can lead the way in promoting transparency, inclusivity, and public trust — key pillars of responsible and impactful research. This approach supports the EU’s broader goals of open science and citizen engagement, ensuring that advances in health research are both scientifically robust and socially responsive. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 35 | 41 References The bibliographic entries are arranged in lexicographical order based on the key, following the APA style. This enables us to place the entries and citations in the table and text in any sequence, allowing for later sorting while ensuring consistency. Key Reference Balázs et al., 2021 Balázs, B., Mooney, P., Nováková, E., Basstin, L., Arsanjani, J. (2021). Data Quality in Citizen Science. The Science of Citizen Science. Springer pp. 139-157. https://doi.org/10.1007/978-3-030-58278-4_8 Boaz et al., 2018 Boaz, A., Hanney, S., Borst, R., O’Shea, A. & Kok, M. (2018). How to engage stakeholders in research: design principles to support improvement. Health Reseach Policy and Systems. 16, 60. https://doi.org/10.1186/s12961-018-0337-6 Bonato et al., 2025 Bonato, V., Vezzani, F., Di Nunzio, G.M. (2025). Advancing Inclusivity in a Medical Terminology Resource concerning the Gut-Brain Interplay: Insights from the HEREDITARY Project. Semmelweis Medical Linguistics Conference 2025 (SMLC 2025) Inclusivity and Diversity in Healthcare Communication Research. In press. Conrad & Poole, 2012 Conrad, C. & Poole, M. (2012). Strategic Organizational Communication: In a Global Economy. United Kingdom: British Library. Costa, 2013 Costa, R. (2013). Terminology and Specialised Lexicography: two complementary domains. In Lexicographica, 29(1), 29–42. Costa et al., 2024 Costa, R., Vezzani, F., Di Nunzio, G. M., Ramos, M., Silva, R., Carvalho, S., Canelas, M., Bonato, V., Romanovych, A., & Boytcheva, S. (2024). Deliverable 3.4: Medical terminology. https://zenodo.org/records/14628022 Craig, 1999 Craig, R. T. (1999). Communication Theory as a Field. In Communication Theory, 9(2), 119–161. https://doi.org/10.1111/j.1468-2885.1999.tb00355.x Davis et al., 2023 Davis, L., Zhu, L., Finkler, W. (2023). Citizen Science: Is It Good Science?. Sustainability. 15, 4577. https://www.mdpi.com/2071-1050/15/5/4577 Downs et al., 2021 Downs, R., Ramapriyan, H., Peng, G., Wei, Y. (2021). Perspectives on Citizen Science Data Quality. Frontiers on Science. 3, pp. 1-6 https://doi.org/10.3389/fclim.2021.615032 Elkins et al., 2011 Elkins, K., Nguyen, C., Kim, D., Meyers, H., Cheung, M. & Huang, S. (2011). Successful strategies for high participation in three regional healthcare surveys: an observational study. BMC Medical Research DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 36 | 41 Key Reference Methodology. 11, 176. https://doi.org/10.1186/14712288-11-176 European Health Information Portal, 2025 European Health Information Portal (2025). HLS-EU - The European Health Literacy Survey. (2021). https://www.healthinformationportal.eu/europeaninitiative/european-health-literacy-survey EU, 2025 EU (European Union). (2025). Empowering citizens through science: The role of citizen science in Europe. European Union Official Website – European Data. https://data.europa.eu/en/newsevents/news/empowering-citizens-through-science-rolecitizen-science-europe Feller, 2024 Feller, J. (2024, October 10). Types of Medical Records for Retrieval. U.S. Legal Support. https://www.uslegalsupport.com/blog/types-of-medicalrecords-for-retrieval/ Fiske, 1990 Fiske, J. (1990). Introduction to Communication Studies. Routledge (2nd ed.). Routledge. https://doi.org/10.4324/9780203134313 Freitag & Pfeffer, 2013 Freitag, A., Pfeffer, M. (2013). Process, Not Product: Investigating Recommendations for Improving Citizen Science ‘‘Success’’. PLoS ONE, 8(5): e64079, pp 1-5. https://doi.org/10.1371/journal.pone.0064079 GHP, 2025 GHP - Good Hospital Practice (2025). Medical instructions on discharge - Treatment Process. GHP - Procedural Instructions. https://gutehospitalpraxis.de/en/manual/2-treatmentprocess/2-5-aftercare/2-5-04-medical-instruction-ondischarge/ Golumbic et al., 2024 Gulombic, Y., Magalhães, J., Motion, A., Roche, J. (2024). Editorial: Bridging citizen science and science communication. Frontiers in Environmental Science. 12: 1474221. https://doi.org/10.3389/fenvs.2024.1474221 Haklay et al., 2020 Haklay, M., Motion, A., Balázs, B., Kieslinger, B., Greshake Tzovaras, B., Nold, C., Dörler, D., Fraisl, D., Riemenschneider, D., Heigl, F., Brounéus, F., Hager, G., Wagenknecht, K., Heuer, K., Vohland, K., Shanley, L., Deveaux, L., Ceccaroni, L., Weißpflug, M., Gold, M., et al. (2020). ECSA's Characteristics of Citizen Science. ECSA European Citizen Science Association. https://pure.iiasa.ac.at/id/eprint/16732/ Hall et al., 2024 Hall, D., Avellaneda-Lopez, P., Ficklin, D., Knouft, J. Lowry, C. (2024). Citizen Silence: Missed opportunities in citizen science. BioScience, Volume 74, Issue 5, (pp. 319–321. https://doi.org/10.1093/biosci/biae020 DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 37 | 41 Key Reference Health Workforce – WHO Team, 2019) Health Workforce – WHO Team. (2019). Classifying health workers: Mapping occupations to the international standard classification. World Health Organization. https://www.who.int/publications/m/item/classifyinghealth-workers Hidalgo et al. 2021 Hidalgo, E., Pereló, J., Becker, F., Bonhoure, I., Legris, M. & Cigarini, A. (2021). Participation and Co-creation in Citizen Science. The Science of Citizen Science. pp. 199-218. https://doi.org/10.1007/978-3-030-58278-4_11 Holtom et al., 2022 Holtom, B., Baruch, Y., Aguinis, H. & Ballinger, G. (2022). Survey response rates: Trends and a validity assessment framework. Human Relations, 75(8), 15601584. https://doi.org/10.1177/00187267211070769 ICPSR, 2025 ICPSR (Inter-university Consortium for Political and Social Research). (2025). Recommended Informed Consent Language for Data Sharing. https://www.icpsr.umich.edu/web/pages/datamanageme nt/confidentiality/conf-language.html Institute of Medicine (US), 1994 Institute of Medicine (US) Committee on the Future of Primary Care; Donaldson, M., Yordy, K., Vanselow, N., editors. (1994). Defining Primary Care: An Interim Report. Washington (DC): National Academies Press (US) ISO 1087:2019 International Organization for Standardization. (2019). Terminology work and terminology science — Vocabulary (ISO Standard No. 1087). https://www.iso.org/standard/62330.html ISO 704:2022 International Organization for Standardization. (2022).Terminology work — Principles and methods. (ISO Standard no. 704:2022). https://www.iso.org/standard/79077.html ISO 24495-1:2023 ISO 24495-1:2023. (2025). Plain language — Part 1: Governing principles and guidelines. https://www.iso.org/obp/ui/en/#iso:std:iso:24495:-1:ed1:v1:en Little, et al., 2021 Little, M., Bonilla, G., McMurry, T., Pebley, K., Klesges, R., Talcott, G. (2021). The Feasibility of Using SelfGenerated Identification Codes in Longitudinal Research With Military Personnel. Evaluation & the Health Professions. 45(4), 354-361. Littlejohn & Foss, 2009 Littlejohn, S., & Foss, K. (2009). Encyclopedia of Communication Theory. SAGE Publications, Inc. https://doi.org/10.4135/9781412959384 Liu et al., 2021 Liu. H-Y, D ör le r, D., Heigl , F. , Gr os sb er nd t, S. (2 02 1) . Citizen Science Platforms. The Science of Citizen DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 38 | 41 Key Reference Science (pp. 439-459). https://doi.org/10.1007/978-3030-58278-4_22 Meyer, 2001 Meyer, Ingrid (2001). Extracting Knowledge-rich Contexts for Terminography: A Conceptual and Methodological Framework. In: Bourigault, D., Jacquemin, C., and L'Homme M.C. (eds): Recent Advances in Computational Terminology, John Benjamins, 279-302. https://doi.org/10.1075/term.8.1.10lan Nundy et al., 2021 Nundy, S., Kakar, A., Bhutta, Z. (2021). Medical Records. How to Practice Academic Medicine and Publish from Developing Countries? . Springer, 429-440. OECD, 2016 OECD (2016). Research Ethics and New Forms of Data for Social and Economic Research, OECD Science, Technology and Industry Policy Papers, No. 34, OECD Publishing. http://dx.doi.org/10.1787/5jln7vnpxs32-en OED, 2025 Oxford English Dictionary (OED) (2025). Citizen Science – Factsheet. https://www.oed.com/dictionary/citizenscience_n?tab=factsheet#316619123100 Pelikan et al., 2019 Pelikan, J., Ganahl, K., Van den Broucke, S. & Sørensen, K. (2019). Measuring health literacy in Europe: Introducing the European Health Literacy Survey Questionnaire (HLS-EU-Q). Iternational Handbook of Health Literacy (pp. 115-138). Policy Press. https://www.researchgate.net/publication/372276040_M easuring_health_literacy_in_Europe_Introducing_the_E uropean_Health_Literacy_Survey_Questionnaire_HLSEU-Q Prinzellner et al., 2022 Prinzellner, Y., Simon, A., Drachmann, D., Werner, K., Münter, L., Bulsink, V., Smits, C., Fitzpatrick. G. & Schwaninger, I. (2022). “The support needs to be part of the system”: designing inclusive eHealth applications for older adults with low eHealth literacy. Engaging Citizen Science Conference 2022 (CitSci2022), 1-6. https://pos.sissa.it/418/083/pdf Rix et al., 2020 Rix, J., Branney, J., Breen, A., Sewell, P., Docherty, S. (2020). Stakeholder involvement in the development of trial material for clinical trial. Health Expectations - An International Journal of Public Participation in Health Care and Health Policy. 24, 399-410. https://doi.org/10.1111/hex.13181 Rüfenacht et al., 2021 Rüfenacht, S., Woods, T., Agnello, G., Gold, M., Hummer, P., Land-Zandstra, A. & Sieber, A. (2021). Communication and Dissemination in Citizen Science. DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 39 | 41 Key Reference The Science of Citizen Science. 475-494. https://doi.org/10.1007/978-3-030-58278-4_24 Sanz, 2020 Sanz, F. (2020). Current methods in Citizen Science engagement. ECS Platform. Current methods in Citizen Science engagement Saris & Gallhofer, 2014 Saris, W.E. and Gallhofer, I.N. (2014). Design, Evaluate and Analysis of Questionnaires for Survey Research. John Willey and Sons. https://doi.org/10.1002/9781118634646 Silverman et al., 2013 Silverman, J., Kurtz, S., & Draper, J. (2013). Skills for Communicating with Patients. CRC Press. https://doi.org/10.1201/9781910227268 Street Jr. et al., 2009 Street, R. L., Jr., Makoul, G., Arora, N. K., & Epstein, R. M. (2009). How does communication heal? Pathways linking clinician–patient communication to health outcomes. In Patient Education and Counseling, 74(3), 295–301. https://doi.org/10.1016/j.pec.2008.11.015 UNESCO Institute for Statistics, 2012 UNESCO. (2012). International Standard Classification of Education - ISCED 2011. UNESCO Institute for Statistics. https://uis.unesco.org/sites/default/files/documents/inter national-standard-classification-of-education-isced2011-en.pdf Vohland et al., 2021 Vohland, K., Göbel, C., Baláz, B., Butkevičienė, E., Daskolia, M., Duží, B., Hecker, S., Manzoni, M., Schade, S. (2021). Citizen Science in Europe. The Science of Citizen Science. Springer. https://doi.org/10.1007/978-3030-58278-4_3 Vorvick, 2023 Vorvick, L. J. (2023, October 13). (2025). Choosing effective patient education materials. MedlinePlus - Trusted Health Information for You. https://medlineplus.gov/ency/patientinstructions/000455 .htm Wermuth & Verplaetse, 2019 Wermuth, M. C., & Verplaetse, H. (2019). Medical terminology in the Western world: Current situation. In Handbook of Terminology, Volume 2: Terminology in the Arab world, 83-108. John Benjamins Publishing Company. https://doi.org/10.1075/hot.2 WHO, 2023 WHO (2023). WHO tool for benchmarking ethics oversight of health-related research involving human participant. World Health Organization. WHO tool for benchmarking ethics oversight of health-related research involving human participants WHO, 2025a World Health Organization. (2025a). Adolescent health in the South-East Asia Region. Adolescent Health. World DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 40 | 41 Key Reference Health Organization.https://www.who.int/southeastasia/healthtopics/adolescent-health WHO, 2025b World Health Organization. (2025b). Age Group Codelist. https://apps.who.int/gho/data/node.searometadata.AGEGROUP?lang=en WHO, 2025c World Health Organization. (2025c). Research Ethics Review Committee (ERC) - Templates for informed consent forms. World Health Organization. https://www.who.int/groups/research-ethics-reviewcommittee/guidelines-on-submitting-researchproposals-for-ethics-review/templates-for-informedconsent-forms DELIVERABLE 6.5 04.08.2025, V1.0 GA 101137074 41 | 41 Annexes Number Title Annex 1 Health Literacy and Access to Health Information: A Socio-Demographic Survey Annex 2 Typology and Types of Medical Documents Annex 3 Sources of Semi-Specialized Texts