Data work and practices in healthcare: A scoping review.

CONTEXT: In healthcare, digitization has been widespread and profound, entailing a deluge of data. This has spurred ambitions for healthcare to become data-driven to improve efficiency and quality, and within medicine itself to improve diagnosing and treating diseases. The generation and processing of data requires human intervention and work, though this is often not acknowledged. PURPOSE: The paper investigates who, where, by which means, and for which purposes data work is conducted which is crucial for healthcare managers and policy makers if ambitions to become data-driven are to succeed. To guide further research, it also provides an overview of existing research on data work and practices. METHODS: We conducted a scoping review based on a search for papers including the terms healthcare or health care combined with at least one of the following terms: data work, data worker*, data practice*, data practitioner* in Scopus and Web of Science. 74 papers on data work or practices in healthcare were included. ANALYSIS: The 74 papers were coded and analyzed regarding the following themes: the kind of data workers and practitioners, organizational settings, involved technologies, purposes, data work tasks, theories and concepts, and definitions of data work and practice. RESULTS: Data work is pervasive in healthcare and conducted by various professions and people and in various contexts. The field researching data work and practices is emerging, with publications spread across multiple venues. and there is a need for more precise definitions of data work. Further, data work and practices are useful concepts that have enabled the exploration of those efforts and tasks in detail. CONCLUSION: The research on data work and practices in healthcare is emerging and promising. We call for more research to consolidate the field and to better understand and support the work needed for healthcare to become data-driven.

Equity in digital healthcare - the case of Denmark.

As digital healthcare services are expanding in use and purpose in a Danish context so are the functionalities embedded in these, constituting citizens' access to healthcare services and personal health data. In Denmark, the impact of inequalities in digital healthcare remains largely unexplored, making it crucial to pay close attention to this aspect as the digital transformation of the sector progresses. According to the Danish Health Act (2019), the Danish healthcare system is required to ensure easy and equal access to healthcare, high-quality treatment, coherent patient pathways, freedom of choice, easy access to information, transparency, and short waiting times for every citizen. These are focal law-based requirements influenced by the digitalisation of healthcare. Hence, based on insights from a highly digitalised country, in this case, Denmark, this paper aims to initiate a discussion on inequities in digital healthcare, address current challenges, and consider future directions by elaborating on conceptual, ethical, evidence-informed, and methodological issues linked to inequities in digital healthcare. Specifically, this paper discusses why inequities in digital healthcare in a Danish context need increased attention, how health equity is embedded in Danish legislation and how it can be approached from an ethical perspective. The central focus revolves around the essential principles of empowerment, emancipation, and equity, which are being highlighted to emphasise that the digitalisation of healthcare should actively work towards preventing and avoiding the perpetuation of healthcare inequalities. The paper concludes by discussing future directions for ensuring a more sustainable, robust, and equitable digital healthcare system.

Digital health care and data work: Who are the data professionals?

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.

Medical Secretaries' Registration Work in the Data-Driven Healthcare Era.

Through a qualitative study in six hospital departments in the Northern Region of Denmark, this article aims to shed light on how a non-clinical group, medical secretaries, supports clinical-administrative documentation as they translate between the clinical and administrative domains. This article shows how this demands context-sensitive knowledge and skills acquired through deep engagement with the full scope of clinical-administrative work at the department level. We argue that, given the increasing ambitions for secondary uses of healthcare data, specific clinical-administrative competencies beyond those of clinicians are increasingly necessary in the skillmix in hospitals.

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.

Data Work in Health Care: The Case of Medical Secretaries.

This paper investigates the often neglected area of data work by medical secretaries, specifically in the context of hospitals in Denmark. Since the 1930s medical secretaries have played a steadily more central role in meeting the growing need for health data. With electronic health records (EHRs) and promises of data automation, the profession has been put at risk of redundancy. While there is a considerable base of research on the datafication of health care, the data work emerging from datafication remains undescribed. Hence, we are conducting a socio-technical study of clinical-administrative data work in contemporary Danish public hospitals. In this paper we present early insights of this research, indicating the vital role of medical secretaries' data work in securing clinical information at the point of care.

People Centeredness, Chronic Conditions and Diversity Sensitive eHealth: Exploring Emancipation of the 'Health Care System' and the 'Patient' in Health Informatics.

Health care systems struggle to consistently deliver integrated high-quality, safe, and patient-centered care to all in an economically sustainable manner. Inequity of access to health care services and variation in diagnostic and treatment outcomes are common. Further, as health care systems become ever more complex, iatrogenesis and counter productivity have emerged as real dangers. In exploring this paradox, this paper considers a subset of those in society living with chronic conditions. Their attributes and circumstances have led to them being marginalized or excluded from 'end-user' engagement and/or from their requirements being incorporated into technology supported chronic disease management initiatives. Significantly, these citizens are often the most vulnerable and socially disadvantaged and tend to achieve poorer results and cost more per capita than the 'average patient' in their interactions with the health care system. Critically, this paper argues that a truly people-centered technology supported chronic care system can only be designed by understanding and responding to the needs, attributes and capabilities of the most vulnerable in society. This paper suggests innovative ways of supporting interactions with these 'end-users' and highlights how reflection on these approaches can contribute to emancipating the health system to move towards more socially inclusive eHealth solutions.

Changing Health Behavior with Social Technology? A Pilot Test of a Mobile App Designed for Social Support of Physical Activity.

Mobile applications targeting people engaged in physical activity have increased. However, while research has identified social support as a key factor for people's engagement in physical activity, most mobile health (mHealth) applications are designed for individual use. In this paper, we report on a research study exploring opportunities for designing mHealth to facilitate social support around physical activity. A mHealth application was designed, and pilot tested for eight weeks with healthcare professionals (n = 3) and two groups of citizens (n = 20) who were motivated but challenged physically due to various health conditions. Data was collected via online monitoring of the use of the mHealth application during the pilot test and via qualitative interviews with the participants before and after. The results support the idea that designing for social health support is important but so is identifying key challenges related to (i) the facilitation of technology-mediated social health support, especially to a target group that is living with health challenges, and (ii) finding a balance between social and health agendas that bring social support to the foreground for the participants.

Does Health-IT Improve People Centered Care?

Patient involvement can be supported in many ways, some of these through health IT (HIT). Health care practice is changing with digitalization and technologies that patients can use to generate data outside the formal health facilities are growing. Inequality affect citizens ability to participate. There is a need to be mindful of the perceptions and the willingness of citizens and the health care professionals to meet this change. Selected data from two Danish surveys, highlight the citizens and health care professional's perspective on health IT. From the analysis emerge central considerations on what to be aware of in the future development of HIT.

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.

Subclinical bacteriuria in a mixed population of 179 middle-aged and elderly cats: a prospective cross-sectional study.

OBJECTIVES: Subclinical bacteriuria (SBU) is the presence of bacteria in urine with no clinical evidence of lower urinary tract disease. The aims of this study were to investigate if being overweight and/or obesity predispose cats to SBU, to investigate previously reported risk factors and to determine the prevalence of SBU in a prospectively sampled cohort of middle-aged and elderly cats. METHODS: Cats aged ⩾6 years presenting to the University Hospital for Companion Animals in Copenhagen from 2015-2019 for causes unrelated to the lower urinary tract were eligible for enrolment. Body condition scoring was performed on a 9-point scale. Overweight was defined as a body condition score (BCS) ⩾6 and obese as a BCS ⩾8. The correlation between SBU and the variables of sex, healthy/diseased, age, BCS and comorbidities (chronic kidney disease, diabetes mellitus, hyperthyroidism, hepatic disorders and gastrointestinal disease) were analysed by binominal logistic regression. RESULTS: In total, 179 cats ranging from 6-20 (median 10) years of age were included. SBU was identified in 11/179 cats (6.1%). Being overweight was not a significant risk factor (overweight/obese odds ratio [OR] 0.3, 95% confidence interval [CI] 0.06-1.6, relative risk [RR] 0.3 [95% CI 0.05-1.3] vs lean; P = 0.2) and neither was obesity compared with lean and overweight cats (P = 0.99). Female sex (OR 6.2 [95% CI 1.3-30], RR 4.7 [95% CI 1.5-12] vs male; P = 0.02) and the presence of hepatic disease (OR 7.5 [95% CI 1.4-39], RR 5.3 [95% CI 1.3-12]; P = 0.02) were significant risk factors. CONCLUSIONS AND RELEVANCE: The prevalence of SBU in cats is low, and being overweight/obese was not identified as a predisposing factor. The increased risk associated with hepatic disease has not been previously reported, and further studies are needed to confirm this finding.

Contradictions in digital health engagement: An activity tracker's ambiguous influence on vulnerable young adults' engagement in own health.

OBJECTIVE: Activity trackers are designed to support individuals in monitoring and increasing their physical activity. The use of activity trackers among individuals diagnosed with depression and anxiety has not yet been examined. This pilot study investigates how this target group engages with an activity tracker during a 10-week health intervention aimed to increase their physical activity level and improve their physical and mental health. METHODS: Two groups of 11 young adults (aged 18-29 years) diagnosed with depression or anxiety participated in the digital health intervention. The study used mixed methods to investigate the research question. Quantitative health data were used to assess the intervention's influence on the participants' health and qualitative data provided insights into the participants' digital health experience. RESULTS: The study demonstrated an ambiguous influence from the use of an activity tracker with positive physical and mental health results, but a fading and even negative digital health engagement and counterproductive competition. CONCLUSIONS: The ambiguous results identify a need for (1) developing strategies for health professionals to provide supervised use of activity trackers and support the target groups' abilities to convert health information about physical activity into positive health strategies, and (2) designing alternatives for health promoting IT targeted users who face challenges and need motivation beyond self-tracking and competition.

Monitoring and Benchmarking eHealth in the Nordic Countries.

The Nordic eHealth Research Network, a subgroup of the Nordic Council of Ministers eHealth group, is working on developing indicators to monitor progress in availability, use and outcome of eHealth applications in the Nordic countries. This paper reports on the consecutive analysis of National eHealth policies in the Nordic countries from 2012 to 2016. Furthermore, it discusses the consequences for the development of indicators that can measure changes in the eHealth environment arising from the policies. The main change in policies is reflected in a shift towards more stakeholder involvement and intensified focus on clinical infrastructure. This change suggests developing indicators that can monitor understandability and usability of eHealth systems, and the use and utility of shared information infrastructure from the perspective of the end-users - citizens/patients and clinicians in particular.

MOVE: A Mobile App Designed for Social Health Relations in Residential Areas.

This paper describes the design of MOVE, a mobile app to support people in forming social relations around exercise in residential areas. MOVE was developed in collaboration with residents and health professionals in a neighbourhood identified as a high-risk health area. The app is targeted to those who are motivated but challenged to do exercise and based on a conceptual model to provide users a social horizon of exercise activities in their residential area. We present the design and first evaluation of MOVE, including usability evaluations in controlled and natural settings. Results from these evaluations indicate that MOVE is a promising platform to support local social health relations once the identified usability problems are resolved.

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.

Constructive eHealth evaluation: lessons from evaluation of EHR development in 4 Danish hospitals.

BACKGROUND: Information and communication sources in the healthcare sector are replaced with new eHealth technologies. This has led to problems arising from the lack of awareness of the importance of end-user involvement in eHealth development and of the difficulties caused by using traditional summative evaluation methods. The Constructive eHealth evaluation method (CeHEM) provides a solution to these problems by offering an evaluation framework for supporting and facilitating end-user involvement during all phases of eHealth development. The aim of this paper is to support this process by sharing experiences of the eHealth evaluation method used in the introduction of electronic health records (EHR) in the North Denmark Region of Denmark. It is the first time the fully developed method and the experiences on using the CeHEM in all five phases of a full lifecycle framework is presented. METHODS: A case study evaluation of the EHR development process in the North Denmark Region was conducted from 2004 to 2010. The population consisted of clinicians, IT professionals, administrators, and vendors. The study involved 4 hospitals in the region. Data were collected using questionnaires, observations, interviews, and insight gathered from relevant documents. RESULTS: The evaluation showed a need for a) Early involvement of clinicians, b) The best possible representation of clinicians, and c) Workload reduction for those involved. The consequences of not providing this were a lack of ownership of decisions and negative attitudes towards the clinical benefits related to these decisions. Further, the result disclosed that by following the above recommendations, and by providing feedback to the 4 actor groups, the physicians' involvement was improved. As a result they took ownership of decisions and gained a positive attitude to the clinical benefits. CONCLUSIONS: The CeHEM has proven successful in formative evaluation of EHR development and can point at important issues that need to be taken care of by management. The method provides a framework that takes care of feedback and learning during eHealth development. It can thus support successful eHealth development in a broader context while building on a well-known success factor: end-user involvement in eHealth development.

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.

Steps Toward Technology Design to Beat Health Inequality - Participatory Design Walks in a Neighbourhood with High Health Risks.

This paper explores participatory design walks (PD walks) as a first step toward a participatory design of health information technology (HIT) aimed at tackling health inequality in a neighbourhood identified as a high-risk health area. Existing research shows that traditional methods for health promotion, such as campaigns and teaching, have little to no effect in high-risk health areas. Rather, initiatives must be locally anchored - integrated into the local culture, and based on social relationships and group activities. This paper explains how we conducted PD walks with residents and community workers in the neighbourhood and how this participatory approach supported a first step toward HIT design that tackles health inequality. This is important, as people in neighbourhoods with high health risks are not the target audience for the health technology innovation currently taking place despite the fact that this group suffers the most from health inequality and weigh most on the public healthcare services and costs. The study identifies social and cultural aspects that influence everyday health management and presents how a citizen-driven approach like PD walks, can contribute valuable insights for design of HIT. The paper provides concrete methodological recommendations on how to conduct PD walks that are valuable to HIT designers and developers who aim to do PD with neighbourhoods.

Equality Challenges in the Use of eHealth: Selected Results from a Danish Citizens Survey.

The increased focus on and use of citizen/patient generated health data has spurred a wide range of personal health technology projects within digital intervention in health, e.g. telehealth. These developments are focused on objectives of improving health, but also claiming to provide health services at a lower cost. However, the question is: do the ways healthcare technologies are designed and developed support and improve healthcare services for those who need it the most? Survey data from our study point toward health informatics challenges in reaching the people who are considered in 'health risk' group, who, in this study, are interpreted as people with low level of education. The study shows that this group is less likely to use and communicate through health information technologies (HIT) and is generally more sceptical towards the benefits of HIT. We conclude that there is a need to pay specific attention to the patient groups that are socio-economically and health wise weakest during HIT design and development. It would also provide equality and equity in digital health intervention and access to healthcare for them in the future.