Patient-reported outcomes (PROs) are increasingly applied in chronic care due to their many functionalities and synergies with current healthcare policies. The participatory potential of PROs is especially emphasised in the Danish context. This review scrutinises the association between PRO and patient participation in chronic care. This scoping review adheres to PRISMA-ScR guidelines, and the synthesis is based on narrative and thematic analyses. Eighty-four articles were deemed eligible. The association between PRO and patient participation regards seven themes: PRO development, response rates and patient burden, patient empowerment and self-management, display and quality of data, patient-clinician communication, shared decision-making, and organisational and attitudinal aspects. Lack of knowledge, actor attitudes, organisational setup, and technological infrastructure act as the main barriers. The connection between PROs and patient participation is dialectic and unfolds in three phases-before, during, and after patient-clinician consultation. Knowledge regarding the last phase is particularly scarce. Henceforth, studies should address how to include a broader segment of patients, PROs participatory effects over time and PROs impact on patients' everyday lives. The review provides knowledge concerning the association between PROs and patient participation to enhance future chronic care, research, and discussions in the area.

Experience has shown that for new health-information-technology (HIT) to be suc-cessful clinicians must obtain positive clinical benefits as a result of its implementation and joint-ownership of the decisions made during the development process. A prerequisite for achieving both success criteria is real end-user-participation. Experience has also shown that further research into developing improved methods to collect more detailed information on social groups participating in HIT development is needed in order to support, facilitate and improve real end-user participation.

Background: This article reports on a study that investigated data professionals in health care. The topic is interesting and relevant because of the ongoing trend towards digitisation of the healthcare domain and efforts for it to become data driven, which entail a wide variety of work with data. Objective: Despite an interest in data science and more broadly in data work, we know surprisingly little about the people who work with data in healthcare. Therefore, we investigated data work at a large national healthcare data organisation in Denmark. Method: An explorative mixed method approach combining a non-probability technique for design of an open survey with a target population of 300+ and 11 semi-structured interviews, was applied. Results: We report findings relevant to educational background, work identity, work tasks, and how staff acquired competences and knowledge, as well as what these attributes comprised. We found recurring themes of healthcare knowledge, data analytical skills, and information technology, reflected in education, competences and knowledge. However, there was considerable variation within and beyond those themes, and indeed most competences were learned “on the job” rather than as part of formal education. Conclusion: Becoming a professional working with data in health care can be the result of different career paths. The most recurring work identity was that of “data analyst”; however, a wide variety of responses indicated that a stable data worker identity has not yet developed. Implications: The findings present implications for educational policy makers and healthcare managers.

Background: The WHO framework on integrated people-centred health services promotes a focus on the needs of people and their communities to empower them to have a more active role in their own health. It has advocated five strategies including: Engaging and empowering people and communities; co-ordinating services within and across sectors; and, creating an enabling environment. Any implementation of these strategies needs to occur at individual, community, and health service levels. Useful steps to reorganising health service provision are already being guided by existing models of care linked to increased adoption and use of digital technologies with examples including: Wagner’s Chronic Care Model (CCM); Valentijn’s Rainbow Model of Integrated Care (RMIC); and Phanareth’s et al.’s Epital Care Model (ECM). However, what about individuals and the communities they live in? How will strategies be implemented to address known inequities in: the social determinants of health; access to, and use of digital technologies, and individual textual, technical, and health literacies? Proposal of a matrix framework: This paper argues that people with complex and chronic conditions (PwCCC) living in communities that are at risk of being under-served or marginalised in health service provision require particular attention. It articulates a step-by-step process to identify these individuals and co-produce mechanisms to engage, empower and ultimately emancipate these individuals to become activated in living with their conditions and in their interactions with the health system and community. This step-by-step process focuses on key issues related to the design and role of digital services in mitigating the effects of the health service inequity and avoiding the creation of an e-health divide amongst users when advocating digital behaviour change initiatives. This paper presents a matrix framework providing a scaffold across three inter-related levels of the individual; the provider, and the health and care system. The matrix framework supports examination of and reflection on the design and role of digital technologies in conjunction with pre-existing motivational instruments. This matrix framework is illustrated with examples from practice. Conclusion: It is anticipated that the matrix framework will evolve and can be used to map and reflect on approaches and practices aiming to enrich and stimulate co-production activities supported by digital technology focused on enhancing people-centred health services for the marginalised.

Patient-reported outcomes (PROs) digitalization and integration into clinical practice has widened its purpose, which makes it relevant to reconceptualize PRO accordingly. Therefore, this study aims to describe and critically discuss the purposes of PRO and to suggest an interdisciplinary definition of PRO aligned with current applications. The findings in this study are based on a formerly conducted scoping review on PRO and patient participation; hence, a sub-study focusing on the purpose of PRO. The purposes of PRO pertain to research and drug testing; quality and economy; patient-centered care; politicization and democratization; and organization and culture. The suggested definition describes PRO as a validated questionnaire; developed in collaboration between patients, clinicians, and other pertinent stakeholders; systematically applied; mediated digitally or paper-based; completed directly by the patient, with assistance or by a qualified proxy; composed of generic, disease-specific, condition-specific or preference-based measures; consisting of content pertaining to the patient’s physical and mental health condition, functioning, symptoms, well-being or health-related quality of life (HRQoL); providing objective and/or subjective outcomes, and individual and/or population data. An alternative understanding of PRO is meant to enhance the link between purposes and definitions of PRO, facilitating interdisciplinary stakeholder discussions on PRO, potentially improving future PRO interventions.

In eHealth development there is an increasing focus on user participation inspired by the information systems field of practice and research. There are, however, many other challenges in developing information systems that fit healthcare practices. One of these is the challenge of cooperation and communication in development projects that are initiated and managed by clinicians e.g. cooperating with IT professionals in 'bottom up' health informatics projects that have been initiated and are managed by healthcare professional project managers. The analysis and results are drawn from a qualitative case study on a systems development project that was managed by a local, non-technical, healthcare professional and the complex blend and interactions with the IT professionals in the phases of ideas, design, development, implementation, maintenance and distribution. We analyze the challenges of cooperation and communication using perspectives from information systems research and the concepts of 'language-games' and 'shared design spaces', and thereby exploring the boundaries between the different communication, practice and culture of the IT professionals and the healthcare professionals. There is a need to (a) develop a better understanding of the development process from the point of view of the 'user' and (b) tools for making technical knowledge explicit in the development process. Cooperative and communicative methods are needed that support and develop the shared design spaces between IT professionals and the clinical context in order to strengthen small-scale health information systems projects.