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.
Patients with a hematologic malignancy increasingly prefer to be actively involved in treatment decision-making. Shared decision-making (SDM), a process that supports decision-making in preference-sensitive decisions, fits well with this need. A decision is preference sensitive when well-informed patients considerably differ in their trade-offs between the pros and cons of one option, or if more equal treatment options are available, including no treatment. SDM involves several steps: the first is choice talk, where the professional informs the patient that a decision needs to be made between the various relevant options and that the patient's opinion is important. The second is option talk, where the professional explains the options and their pros and cons. In the third step, preference talk, the professional and the patient discuss the patient's preferences. The professional supports the patient in deliberation. The final step is decision talk, where the professional and patient discuss the patient's decisional role preference, make or defer the decision and discuss possible follow-up.
In the decision-making environment of evidence-based practice, the following three sources of information must be integrated: research evidence of the intervention, clinical expertise, and the patient’s values. In reality, evidence-based practice usually focuses on research evidence (which may be translated into clinical practice guidelines) and clinical expertise without considering the individual patient’s values. The shared decision-making model seems to be helpful in the integration of the individual patient’s values in evidence-based practice. We aim to discuss the relevance of shared decision making in chronic care and to suggest how it can be integrated with evidence-based practice in nursing. We start by describing the following three possible approaches to guide the decision-making process: the paternalistic approach, the informed approach, and the shared decision-making approach. Implementation of shared decision making has gained considerable interest in cases lacking a strong best-treatment recommendation, and when the available treatment options are equivalent to some extent. We discuss that in chronic care it is important to always invite the patient to participate in the decision-making process. We delineate the following six attributes of health care interventions in chronic care that influence the degree of shared decision making: the level of research evidence, the number of available intervention options, the burden of side effects, the impact on lifestyle, the patient group values, and the impact on resources. Furthermore, the patient’s willingness to participate in shared decision making, the clinical expertise of the nurse, and the context in which the decision making takes place affect the shared decision-making process. A knowledgeable and skilled nurse with a positive attitude towards shared decision making – integrated with evidence-based practice – can facilitate the shared decision-making process. We conclude that nurses as well as other health care professionals in chronic care should integrate shared decision making with evidence- based practice to deliver patient-centred care.
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.
