The experiences of community-dwelling individuals with newly diagnosed type-2 diabetes in using patient-reported outcomes in a municipal setting.

Objective: The aim of this study was to examine the experiences of citizens with newly diagnosed type-2 diabetes when using a newly developed and implemented patient-reported outcome (PRO) questionnaire as part of clinical practice in a municipal setting. Specifically, the citizens' experiences in completing the PRO questionnaire and using the PRO data in consultations were examined. Methods: The study was based on participant observations and semi-structured interviews and conducted at the Centre for Diabetes in Copenhagen and online. Participants were recruited deliberately to represent different cases of citizens with type-2 diabetes. Ten citizens were observed during consultation with an healthcare professional (HCP) and subsequently interviewed. The interviews were recorded as audio or video and transcribed verbatim. A thematic analysis was performed on the basis of previously described guidelines. Results: The PRO instigated reflections and enlightened citizens on disease-specific matters and motivated citizens to engage in self-management activities. During the citizen-HCP consultations, the PRO data prepared the actors before the meeting and enabled structured, effective and relevant conversations. However, the PRO questionnaire lacked response options, triggered citizen concerns about future health conditions and made them unsure if their answers were correct and aware that they lacked disease-specific knowledge. The experiences were linked to the citizens' situation as newly diagnosed with type-2 diabetes. Conclusion: The informants found the PRO questionnaire and data meaningful and useful. However, adjustments are needed if the PRO instrument is to resemble the disease situation of citizens with newly diagnosed type-2 diabetes.

The association between patient-reported outcomes (PROs) and patient participation in chronic care: A scoping review.

OBJECTIVES: 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. METHODS: This scoping review adheres to PRISMA-ScR guidelines, and the synthesis is based on narrative and thematic analyses. RESULTS: 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. CONCLUSION: 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. PRACTICE IMPLICATIONS: The review provides knowledge concerning the association between PROs and patient participation to enhance future chronic care, research, and discussions in the area.

Evaluating the Use of a PRO Questionnaire in Clinical Practice.

Aalborg University Hospital in Farsø uses data from a patient-reported outcome (PRO) questionnaire in order to predict if patients diagnosed with osteoarthritis will benefit from surgery. The purpose of including PRO in the decision-making is to ensure quality and transparency, to include patients in their own treatment, and to make the patients central to both the decision-making and the dialogue. Our evaluation of the use of the PRO questionnaire is based on the observation of patients filling out the questionnaire and interviews with 7 patients and a doctor. We found that there were several usability issues especially for the patients, such as navigation problems and a lack of consistency in the layout of the measurement scales. Furthermore, some questions were difficult for the patients to interpret. The interviewed patients did not report any value from answering the questionnaire. We argue that it may take more than filling out a questionnaire for the patient to feel involved in their own treatment.

Digital Support for Self-Management in Children with Diabetes: Understanding Their Needs and Developing a Design Concept.

In this paper we present a study on the needs and requirements in a digital tool to support self-management in children and adolescents (0-18 years) with type 1 diabetes. The study was formally initiated by the Steno Diabetes Center North Jutland (SDCN), which wanted to develop a virtual universe that could support children and young people in coping with their disease. Through this study we interviewed the project manager from SDCN and the head of the family group in North Jutland. Furthermore, we observed a workshop involving health care professionals and learning specialists who were working with ideas for the virtual universe. We conducted two focus group interviews, one for children with type 1 diabetes and one for parents with diabetic children. The analysis of the data revealed very different ideas about what digital support is important for the self-management of this target group. Health care professionals focused on developing various learning materials using virtual reality or augmented reality, while the parents desired security and control and requested materials that could inform and educate people in their locale, such as school teachers, parents of their children's friends, etc. The children emphasized the importance of not being singled out and requested simple tools that could be used from their smartphones. They especially asked for tools that could help them manage their diabetes by themselves in a fast and effective way, e.g., making it easier to count carbohydrates and calculate their insulin intake. Based on the analysis, we developed suggestions for a design. The main lesson learned from this study was the importance of focusing on the actual users and their everyday lives in developing new tools, and not on technological possibilities.

The Digital Transformation of Patient-Reported Outcomes' (PROs) Functionality Within Healthcare.

This paper elucidates how the functionality of Patient-Reported Outcome (PRO) has evolved due to its digital transformation. Hence, PROs traditional use within healthcare is described and compared to the application of electronic PROs (ePROs); leading to a discussion regarding PROs functionality. The literature included in this paper stems from a systematic scoping review. The digitalization supplements former functionalities of PRO by enabling timely, accessible, systematical and progression oriented data; however, further improvements are necessary to enhance PROs application in current healthcare.

Speaking the same language: Development of a Nutrition Minimum Data Set for healthcare professionals in primary healthcare.

Providing the best possible nutritional care requires accurate and precise communication between healthcare professionals. Developing a Nutrition Minimum Data Set will inform professionals in primary healthcare of which core elements should be documented and facilitate a standardized approach to the documentation of nutritional care. A two-step methodological approach was utilized in this study: (1) a systematic scoping review was conducted to map evidence underpinning the development of a Minimum Data Set and (2) the datasources were categorized using the inductive content analysis approach. A total of 32 items were identified in the datasources. Five categories were inductively derived from the data: (1) physiologic measurements, (2) ability to eat, (3) intake, (4) stress factors and (5) factors which indirectly affect intake and needs. Organizing the documentation following the structure presented in this Minimum Data Set will contribute to a standardized terminology, which may lead to increased quality of documentation, increased continuity of care and improved health outcomes.

Avoiding Sedentary Work: Exploring Motivational Issues.

In this paper we present a qualitative study on motivations for avoiding sedentary work. Sedentary work has been recognized as a significant public health problem and many workplaces now invest in initiatives to support employees in avoiding it. The initiative in focus here include bikes, treadmills, step machines and adjustable workstations combined with a digital platform to keep track of activities and to make relevant information available. Experiences indicates that while employees are excited at the beginning, the use of exercise tools drop relatively fast. In order to understand motivation for use, clarify challenges and identify opportunities to support use of exercise tools through the digital platform we did interviews with employees and decision makers from four different companies. The overall challenge identified was pressure of busyness and reasons for use was due to individual objectives. Thus, in order to support employees in avoiding sedentary work the digital platform should provide facilities which allow for formulating and pursuing individual objective.

Staff Training on the Use of Health Information Systems: What Do We Know?

Staff training is acknowledged as an important activity when implementing health information systems (HISs). This paper reviews the literature on staff training in connection with HIS implementation. The aim is to identify critical issues to reflect on when planning or evaluating this type of training. Searches were conducted in three research databases, resulting in 423 hits. Sixty-four papers were retrieved for more detailed examination, and 12 papers were selected for analysis. The analysis focused on the content, organization and pedagogical approach. In general, the review revealed minor primarily descriptive studies focused on aspects of staff training rather than strategies for staff training. The review revealed specific agreed-upon issues that are considered important for the success of the training. The issues identified are transfer of knowledge and skills is not enough, ongoing training is important, training should be related to practice and address individual learning needs, and super-users are important facilitators.

Nursing Minimum Data Sets for documenting nutritional care for adults in primary healthcare: a scoping review.

OBJECTIVE: To identify all published nutritional screening instruments that have been validated in the adult population in primary healthcare settings and to report on their psychometric validity. INTRODUCTION: Within health care, there is an urgent need for the systematic collection of nursing care data in order to make visible what nurses do and to facilitate comparison, quality assurance, management, research and funding of nursing care. To be effective, nursing records should accurately and comprehensively document all required information to support safe and high quality care of patients. However, this process of documentation has been criticized from many perspectives as being highly inadequate. A Nursing Minimum Data Set within the nutritional area in primary health care could therefore be beneficial in order to support nurses in their daily documentation and observation of patients. INCLUSION CRITERIA: The review considered studies that included adults aged over 18 years of any gender, culture, diagnosis and ethnicity, as well as nutritional experts, patients and their relatives. The concepts of interest were: the nature and content of any nutritional screening tools validated (regardless of the type of validation) in the adult population in primary healthcare; and the views and opinions of eligible participants regarding the appropriateness of nutritional assessment were the concept of interest. Studies included must have been conducted in primary healthcare settings, both within home care and nursing home facilities. METHODS: This scoping review used a two-step approach as a preliminary step to the subsequent development of a Nursing Minimum Data Set within the nutritional area in primary healthcare: i) a systematic literature search of existing nutritional screening tools validated in primary health care; and ii) a systematic literature search on nutritional experts opinions on the assessment of nutritional nursing care of adults in primary healthcare as well as the views of patients and their relatives. Multiple databases (PubMed, CINAHL, Embase, Scopus, Swemed+, MedNar, CDC, MEDION, Health Technology Assessment Database, TRIP database, NTIS, ProQuest Dissertations and Theses, Google Scholar, Current Contents) were searched from their inception to September 2016. RESULTS: The results from the studies were extracted using pre-developed extraction tools to all three questions, and have been presented narratively and by using figures to support the text. Twenty-nine nutritional screening tools that were validated within a primary care setting, and two documents on consensus statements regarding expert opinion were identified. No studies on the patients or relatives views were identified. CONCLUSIONS: The nutritional screening instruments have solely been validated in an over-55 population. Construct validity was the type of validation most frequently used in the validation process covering a total of 25 of the 29 tools. Two studies were identified in relation to the third review question. These two documents are both consensus statement documents developed by experts within the geriatric and nutritional care field. Overall, experts find it appropriate to: i) conduct a comprehensive geriatric assessment, ii) use a validated nutritional screening instrument, and iii) conduct a history and clinical diagnosis, physical examination and dietary assessment when assessing primarily the elderly's nutritional status in primary health care.

Patient at Work - In the Era of PRO.

There is a widespread consensus that it is important to involve patient in their own care, both for the reasons of quality and safety in healthcare and for the sake of the patients' individual rights. The appreciation of patient participation and related notions such as patient empowerment, patient centered care, patient involvement, patient as co-producers of health et cetera, indicate that the role of the patient have changed over the last decades. It has changed from being a passive recipient of treatment to becoming an active and responsible agent. In this paper, we examine these new roles of the patients and discuss the challenges in realizing them. We include the notion of Patient Reported Outcome (PRO) and suggest that realizing this concept indicate a shift in the understanding of participation/empowerment. Participation of patients in a PRO paradigm means to provide patient with a highly-structured task both in terms of the kind of information the health care system requests, and in terms of how and when. It means to focus on what patients do. Further we suggest that a more precise term to denote the new role allocated to the patient would be patient work, not participation or empowerment. To recognize that being a patient is work, would imply a direct emphasis on competences required and the the time needed, on the division of labor and on the necessary condition for doing the work.

Developments in Participatory Design of Health Information Technology - A Review of PDC Publications from 1990-2016.

The landscape of Participatory Design (PD) of Health Information Technology (HIT) is diverse and constantly evolving. This paper reviews the publications in the proceedings from the Participatory Design Conferences (PDCs) that have been held every two years since 1990. We used the Matrix Method to identify, describe and synthesise HIT publications from the proceedings. A total of 47 papers were included in the review and analysed in relation to six themes. The analysis reveals a significant volume of HIT research at PDCs, with a large amount of attention to digitalisation of health information, work procedures, records, secondary healthcare and health professionals. However, the analysis also shows a development from a primary focus on health workers and hospitals to a recent attention on HIT in everyday life and PD with patients, relatives, neighbourhoods and citizens in general. Additionally, the review shows a growing number of PD methods being applied. This paper concludes that research on PD and HIT appears to be maturing and developing with ongoing technological and societal development.

This Is not Participatory Design - A Critical Analysis of Eight Living Laboratories.

Design of Health Technology for elderly and care personnel has a high priority because of a severe increase of elderly citizens in need of health care combined with a decrease of resources in the health care sector. Desires for maintaining and improving the quality of care while reducing costs has resulted in a search for approaches that support co-operation between technology designers, elderly persons and health care professionals on innovating future care technology. Living laboratories, where areas of a care environment are transformed into a so-called platform for technology innovation, are popular. Expectations for living laboratories are high but examinations of how such laboratories support the intended participatory innovation are few. This paper presents and examines eight living laboratories set up in Danish nursing homes for technology innovation. We present the notion of a living laboratory and explicate the aspirations and expectations of this approach, and discuss why these expectations are hard to meet both on a general level and in the investigated labs. We question the basic assumptions of the possibility of reconciling the different interests of the stakeholders involved. In our analysis we focus on users in the living laboratories. We use guiding principles developed within Participatory Design to reveal the role and participation of the users - the health care professionals and the elderly - in the eight living laboratories. In general, these users played a minor role, in the labs where technical problems turned out to be main activity. We conclude that living laboratories do not nullify different/conflicting interests and that a real-life setting by itself is no guarantee for user participation.

Monitoring Technology Meets Care Work: Challenges of monitoring wet-beds in a nursing home.

Monitoring technology, especially sensor-based technology, is increasingly taken into use in care work. Despite the simplicity of these technologies - aimed to automate what appear as mundane monitoring tasks - recent research has identified major challenges primarily related to the technology's ability to meet the complexity of care work. Understanding intersectional challenges between these care technologies and care work is fundamental to improve design and use of health informatics. In this paper we present an analysis of interaction challenges between a wet-sensor at the task of monitoring wet beds at a nursing home. The analysis identifies the multifaceted nature of monitoring work and the intricacy of integrating sensor technology into the complex knowledge system of monitoring work.

Learning from an Ambient Assisted Living Lab: the case of the intelligent bed.

This paper presents methodological lessons learned from an Ambient Assisted Living (AAL) lab exploring the use of intelligent beds in a nursing home. The living lab study was conducted over a period of three month. 20 intelligent beds were installed. Data was collected via self-registration, diaries, observations, interviews and workshops with residents, nurses, nursing assistants, management, building officers, and purchasers from the Municipality. The paper presents an analysis within the overall themes of technology, use, and care, which is discussed by use of the SWOT framework presenting strengths, weaknesses, opportunities, and threats identified in the living lab of the intelligent bed. The paper concludes by emphasizing the need for mature technology, long-term studies, clarification of role and tasks of different stakeholders, and attention on methods used for living lab evaluations.

Narratives of empowerment and compliance: studies of communication in online patient support groups.

PURPOSE: New technologies enable new forms of patient participation in health care. The article discusses whether communication in online patient support groups is a source of individual as well as collective empowerment or to be understood within the tradition of compliance. The discussion is based on a qualitative analysis of patient communication in two online groups on the Danish portal sundhed.dk, one for lung patients and one for women with fertility problems. METHODS: The object of study is the total sum of postings during a specific period of time - a total of 4301 posts are included. The textmaterial was analyzed according to the textual paradigm of Paul Ricoeur, and the three steps of critical interpretation. Thus, the analysis moves from describing communicative characteristics of the site to a thorough semantic analysis of its narrative structure of construing meaning, interaction and collective identity, and finally as a source of collective action. RESULTS: The meta-narratives of the two groups confirm online patient support groups for individual empowerment, for collective group identity, but not for collective empowerment. The collective identities of patienthood on the two sites are created by the users (patients) through specific styles of communication and interaction, referred to as 'multi-logical narratives'. CONCLUSION: In spite of the potential of online communities of opening up health care to the critical voice of the public, the analysis points to a synthesis of the otherwise opposite positions of empowerment and compliance in patient care. On a collective level, the site is empowering the individual users to comply with 'doctor's recommendations' as a group.

eHealth education of professionals in the Baltic Sea Area.

In this paper we present a study on the extent, level and content of e-Health in existing formal educational systems in Lithuania, Germany, Finland, Norway and Denmark with the objectives of identifying future educational needs within this area. The study was carried out as a desk-top study and took place within the context of the ICT for Health project. The results of the study on the one hand revealed a wide range of programs and courses that included e-Health, but on the other hand also showed that in the educations of health care professionals (physicians, nurses etc.) the integration of e-Health elements are often marginal or non-existing. Thus the study indicates that there is a need for a higher integration of e-Health in the education of health care professionals. We discuss what kind of knowledge of e-Health is needed and how it could or should be integrated in these educations. We argue that providing possibilities for applying and experimenting with e-Health system in a concrete and tangible manner is central in order to raise the acceptance and capabilities of health care professionals to use e-Health systems.

Compliance or patient empowerment in online communities: reformation of health care services?

New technologies enable a different organization of the public's admission to health care services. The article discusses whether online support groups in patient treatment are to be understood in the light of patient empowerment or within the tradition of compliance. The back-ground material of the discussion is complementary data from quantitative research on characteristics of patient support groups, and from two qualitative, in depth studies of the impact of patient networks for lung patients and for women with fertility problems. We conclude that in spite of the potential of online communities of opening up health care to the critical voice of the public, the quantitative and qualitative studies surprisingly point to a synthesis of the otherwise opposite positions of empowerment and compliance in patient care. Thereby the critical potential of online communities in health care services seems reverted into configuring ideal patients from diverse users.

E-learning to train staff in Danish hospitals - three genres of e-learning.

This paper presents a study of the use of e-learning in education and training of hospital staff in Denmark, in particular in relation with the implementation of electronic patient records (EPR). The study consists of a survey mapping the dissemination and main experience from using e-learning in Danish hospitals. The study shows a widespread use and a considerably agreement on the potentials of e-learning in education and training of hospital staff, but also problems and doubtfulness concerning the actual role of e-learning in the overall educational and organizational strategy for the hospital. The majority of hospitals use some sorts of computer-based training program to support the staff in acquiring necessary knowledge to operate the EPR. I argue that a more differentiated understanding is needed in order to realize the potentials and direct the use of e-learning in hospitals. Three genres of e-learning which differ in regards to qualification addressed are identified and I claim that a more explicit understanding of the differences between them is needed in order to guide the choice of e-learning of hospital staff.

Attending unintended transformations of health care infrastructure.

INTRODUCTION: Western health care is under pressure from growing demands on quality and efficiency. The development and implementation of information technology, IT is a key mean of health care authorities to improve on health care infrastructure. THEORY AND METHODS: Against a background of theories on human-computer interaction and IT-mediated communication, different empirical studies of IT implementation in health care are analyzed. The outcome is an analytical discernment between different relations of communication and levels of interaction with IT in health care infrastructure. These relations and levels are synthesized into a framework for identifying tensions and potential problems in the mediation of health care with the IT system. These problems are also known as unexpected adverse consequences, UACs, from IT implementation into clinical health care practices. RESULTS: This paper develops a conceptual framework for addressing transformations of communication and workflow in health care as a result of implementing IT. CONCLUSION AND DISCUSSION: The purpose of the conceptual framework is to support the attention to and continuous screening for errors and unintended consequences of IT implementation into health care practices and outcomes.