Background: Patient decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly. Methods: We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys with topics such as informational/decisional needs of users and requirements for PDAs. Our userbase consisted of 8 urologists, 4 radiation oncologists, 2 oncology nurses, 8 general practitioners, 19 former prostate cancer patients, 4 usability experts and 11 healthy volunteers. Results: Informational needs for patients centered on three key factors: treatment experience, post-treatment quality of life, and the impact of side effects. Patients and clinicians valued a PDA that presents balanced information on these factors through simple understandable language and visual aids. Usability questionnaires revealed that patients were more satisfied overall with the PDA than clinicians; however, both groups had concerns that the PDA might lengthen consultation times (42 and 41%, respectively). The PDA is accessible on http://beslissamen.nl/. Conclusions: User-centered design provided valuable insights into PDA requirements but challenges in integrating diverse perspectives as clinicians focus on clinical outcomes while patients also consider quality of life. Nevertheless, it is crucial to involve a broad base of clinical users in order to better understand the decision-making process and to develop a PDA that is accurate, usable, and acceptable.
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Background: A patient decision aid (PtDA) can support shared decision making (SDM) in preference-sensitive care, with more than one clinically applicable treatment option. The development of a PtDA is a complex process, involving several steps, such as designing, developing and testing the draft with all the stakeholders, known as alpha testing. This is followed by testing in ‘real life’ situations, known as beta testing, and then finalising the definite version. Our aim was developing and alpha testing a PtDA for primary treatment of early stage breast cancer, ensuring that the tool is considered relevant, valid and feasible by patients and professionals. Methods: Our qualitative descriptive study applied various methods including face-to-face think-aloud interviews, a focus group and semi-structured telephone interviews. The study population consisted of breast cancer patients facing the choice between breast-conserving therapy with or without preceding neo-adjuvant chemotherapy and mastectomy, and professionals involved in breast cancer care in dedicated multidisciplinary breast cancer teams. Results: A PtDA was developed in four iterative test rounds, taking nearly 2 years, involving 26 patients and 26 professionals. While the research group initially opted for simplicity for the sake of implementation, the clinicians objected that the complexity of the decision could not be ignored. Other topics of concern were the conflicting views of professionals and patients regarding side effects, the amount of information and how to present it. Conclusion: The development was an extensive process, because the professionals rejected the simplifications proposed by the research group. This resulted in the development of a completely new draft PtDA, which took double the expected time and resources. The final version of the PtDA appeared to be well-appreciated by professionals and patients, although its acceptability will only be proven in actual practice (beta testing)
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OBJECTIVE: Patients diagnosed with advanced larynx cancer face a decisional process in which they can choose between radiotherapy, chemoradiotherapy, or a total laryngectomy with adjuvant radiotherapy. Clinicians do not always agree on the best clinical treatment, making the decisional process for patients a complex problem.METHODS: Guided by the International Patient Decision Aid (PDA) Standards, we followed three developmental phases for which we held semi-structured in-depth interviews with patients and physicians, thinking-out-loud sessions, and a study-specific questionnaire. Audio-recorded interviews were verbatim transcribed, thematically coded, and analyzed. Phase 1 consisted of an evaluation of the decisional needs and the regular counseling process; phase 2 tested the comprehensibility and usability of the PDA; and phase 3 beta tested the feasibility of the PDA.RESULTS: Patients and doctors agreed on the need for development of a PDA. Major revisions were conducted after phase 1 to improve the readability and replace the majority of text with video animations. Patients and physicians considered the PDA to be a major improvement to the current counseling process.CONCLUSION: This study describes the development of a comprehensible and easy-to-use online patient decision aid for advanced larynx cancer, which was found satisfactory by patients and physicians (available on www.treatmentchoice.info). The outcome of the interviews underscores the need for better patient counseling. The feasibility and satisfaction among newly diagnosed patients as well as doctors will need to be proven. To this end, we started a multicenter trial evaluating the PDA in clinical practice (ClinicalTrials.gov Identifier: NCT03292341).LEVEL OF EVIDENCE: NA Laryngoscope, 129:2733-2739, 2019.
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Developing a framework that integrates Advanced Language Models into the qualitative research process.Qualitative research, vital for understanding complex phenomena, is often limited by labour-intensive data collection, transcription, and analysis processes. This hinders scalability, accessibility, and efficiency in both academic and industry contexts. As a result, insights are often delayed or incomplete, impacting decision-making, policy development, and innovation. The lack of tools to enhance accuracy and reduce human error exacerbates these challenges, particularly for projects requiring large datasets or quick iterations. Addressing these inefficiencies through AI-driven solutions like AIDA can empower researchers, enhance outcomes, and make qualitative research more inclusive, impactful, and efficient.The AIDA project enhances qualitative research by integrating AI technologies to streamline transcription, coding, and analysis processes. This innovation enables researchers to analyse larger datasets with greater efficiency and accuracy, providing faster and more comprehensive insights. By reducing manual effort and human error, AIDA empowers organisations to make informed decisions and implement evidence-based policies more effectively. Its scalability supports diverse societal and industry applications, from healthcare to market research, fostering innovation and addressing complex challenges. Ultimately, AIDA contributes to improving research quality, accessibility, and societal relevance, driving advancements across multiple sectors.
The ELSA AI lab Northern Netherlands (ELSA-NN) is committed to the promotion of healthy living, working and ageing. By investigating cultural, ethical, legal, socio-political, and psychological aspects of the use of AI in different decision-makingcontexts and integrating this knowledge into an online ELSA tool, ELSA-NN aims to contribute to knowledge about trustworthy human-centric AI and development and implementation of health technology innovations, including AI, in theNorthern region.The research in ELSA-NN will focus on developing and mapping ELSA knowledge around three general concepts of importance for the development, monitoring and implementation of trustworthy and human-centric AI: availability, use,and performance. These concepts will be explored in two lines of research: 1) use case research investigating the use of different AI applications with different types of data in different decision-making contexts at different time periods duringthe life course, and 2) an exploration among stakeholders in the Northern region of needs, knowledge, (digital) health literacy, attitudes and values concerning the use of AI in decision-making for healthy living, working and ageing. Specificfocus will be on investigating low social economic status (SES) perspectives, since health disparities between high and low SES groups are growing world-wide, including in the Northern region and existing health inequalities may increase with theintroduction and use of innovative health technologies such as AI.ELSA-NN will be integrated within the AI hub Northern-Netherlands, the Health Technology Research & Innovation Cluster (HTRIC) and the Data Science Center in Health (DASH). They offer a solid base and infrastructure for the ELSA-NNconsortium, which will be extended with additional partners, especially patient/citizens, private, governmental and researchrepresentatives, to have a quadruple-helix consortium. ELSA-NN will be set-up as a learning health system in which much attention will be paid to dialogue, communication and education.
The project focuses on sustainable travel attitude and behaviour with attention to balance, liveability, impact and climate change (as indicated above). The customer journey is approached from the consumer side and intends to shed light on the way COVID-19 has influenced (or not) the following aspects:• consumer’s understanding and appreciation of sustainability • the extent to which this understanding has influenced their attitude towards sustainable travel choices• the extent to which this change is represented in their actual and projected travel behaviour throughout the travel decision-making process • conditions that may foster a more sustainable travel behaviourThe project can be seen as a follow up to existing studies on travel intention during and post COVID-19, such as ETC’s publication on Monitoring sentiment for domestic and Intra-European travel – Wave 5, or the joint study of the European Tourism Futures Institute (ETFI – www.etfi.nl) and the Centre of Expertise in Leisure, Tourism and Hospitality (CELTH – www.celth.nl) highlighting four future scenarios for the leisure, tourism and hospitality sectors post COVID-19. The project will look beyond travel intention and will supplement existing knowledge with crucial information on the way consumers view sustainability and the extent to which they are willing to adjust their travel behaviour to aid the recovery of a more sustainable travel and tourism industry. Therefore, the report aims to generate knowledge vital for the understanding of consumer trends and the role sustainability will play in travel choices in the near future.Problem statementPlease describe which question in the (participating) industry is addressed.How has the sustainable travel attitude and behaviour in selected European source markets been influenced by the COVID-19 pandemic? Further questions to be answered:• How did the COVID-19 pandemic influence the consumer’s understanding and appreciation of sustainability?• To what extent did this understanding influence their attitude towards sustainable travel choices?• To what extent is this change represented in their actual and projected travel behaviour throughout the travel decision-making process?• What are the conditions that may foster a more sustainable travel behaviour?
