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A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.

ABSTRACT: BACKGROUND:New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). METHODS:We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. RESULTS:The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. CONCLUSIONS:The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of "big data" registries, including patient-reported data, for care, research, and quality improvement.

SUBMITTER: Dixon-Woods M

PROVIDER: S-EPMC7060536 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.

Dixon-Woods Mary M Campbell Anne A Chang Trillium T Martin Graham G Georgiadis Alexandros A Heney Veronica V Chew Sarah S Van Citters Aricca A Sabadosa Kathryn A KA Nelson Eugene C EC

Implementation science : IS 20200306 1

<h4>Background</h4>New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF).<h4>Methods</h4>We conducted a two-phase qualitative study with stakeholders invo ...[more]

PMID: 32143678

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Project description:BackgroundGuidance and frameworks exist to assist those developing health interventions but may offer limited discussion of 'design', the part of development concerned with generating ideas for and making decisions about an intervention's content, format and delivery. The aim of this paper is to describe and understand the views and experiences of developers and associated stakeholders in relation to how design occurs in health intervention development.MethodsSemi-structured interviews were conducted with 21 people who had developed complex interventions to improve health and/or who were relevant stakeholders (e.g. funders and publishers of intervention development work), regarding their views, experiences and approaches to intervention design. Sampling was purposive in terms of maximising diversity. A thematic inductive analysis was conducted.ResultsApproaches to design varied substantially between intervention developers. This contrasted with consistency in other activities undertaken during development, such as literature review. Design also posed more challenges than other parts of development. We identified six 'modes' of design: informed; negotiated; structured; delegated; 'my baby'; and creative partnership. In understanding the differences between these different modes, and the challenges posed by intervention design, we identified three key themes: enabling creativity during the design process; working with different types of knowledge; and 'stabilising' (developing clear shared understandings of) the intervention development to enable design.ConclusionsDesign has received less attention than other activities undertaken when developing interventions to improve health. Developers take a variety of approaches to design and often find it challenging. Guidance for intervention development in health has tended to see design as proceeding in a predictable and controlled manner from acquired knowledge. Our study suggests that design rarely reflects this rational ideal. Future guidance on intervention development in healthcare should support developers to work effectively with different types of knowledge, to help design progress more smoothly and to maximise creativity.

Project description:ObjectivesThis study aims to assess the implementation of the Family Medicine Programme (FMP), which has taken place in Turkey from 2005 to 2010 as a set of comprehensive primary health care (PHC) reforms and involved changes in professional organisation (eg, family medicine specialisation) and service provision (eg, patients' registration list). Our particular interest is to identify the challenges and limitations that PHC physicians and academicians have encountered in the implementation of the FMP which could have influenced the delivery of care and utilisation of services.DesignWe applied the framework method to analyse data obtained through semi-structured interviews conducted in the field. This qualitative approach involved the categorisation of raw data into a predefined framework, which comprised challenges and limitations identified in the literature, and the emergence of a new framework, whose categories corresponded to challenges and limitations identified through thematic analysis of our data.SettingPHC centres and academic departments from five Turkish provinces.ParticipantsPHC physicians and academicians involved in training and/or research were invited to participate. 20 participants agreed to take part and, due to schedule limitations, 15 participants (seven PHC physicians and eight academicians) completed the interviews.ResultsShortcomings in the planning of the reforms, inadequate commitment to integration of PHC in the system and collateral effects of a market model in healthcare emerged as limitations to successful FMP implementation. Uncertainty about care quality and physicians' ethical values as well as perceptions of organisational injustice among healthcare workers were contributing challenges.ConclusionsA systems thinking approach in the FMP design and implementation could help foresee and address these limitations. In decentralisation processes, such as FMP, shared governance by including PHC stakeholders in policy-making and planning could alleviate misalignment of interests and positively affect PHC performance, for example, by removing barriers to gatekeeping implementation.

Project description:BackgroundDigital health solutions have great potential to change the way health care is delivered, including better clinical outcomes and improved processes and access to health services. However, the adoption of mobile health (mHealth) solutions for patient monitoring has been rather slow in Switzerland. The reasons are complex, and a better understanding is needed to leverage the full potential of mHealth.ObjectiveThis study aimed to deepen the understanding of the potential relevance and influence of mHealth for the health system and health care provision, and factors influencing its adoption. The findings will be used to provide an outlook on feasible recommendations for action.MethodsWe conducted a qualitative survey using a maximum variation sample of a heterogeneous group of stakeholders (N=50) in the Swiss health care system with a profound knowledge of digital health and medical devices. A semistructured interview guide including open- and closed-ended questions was used to address questions around mHealth relevance and its influence on the health system, the relevance of selected determinants for mHealth adoption, and important influencing factors. A content analysis method was applied.ResultsOverall, respondents thought that mHealth would have a beneficial impact on the Swiss health system but that its adoption would evolve slowly. We derived 23 key opportunities regarding patient and patient pathway, treatment of disease, and diseases and health conditions. High consistency in answers among respondents was observed for treatment of disease. Stakeholders' attitudes toward mHealth adoption along the relevance of 23 preselected determinants were relatively consistent. However, we obtained diverging attitudes regarding the influence of trends, enablers, and restraints in Switzerland and translated them into 26 key themes influencing mHealth adoption. Relevant trends comprise changing needs and expectations of patients, a rising need for efficient health care delivery, growing interest in improved outpatient care, and emerging technologies and progressing digitization. Important enablers include growing demand for new financing schemes and incentive concepts, rising demand for comprehensive information on and stronger body of evidence for mHealth use cases, and increasing need for easy to use alternate care approaches. Challenging restraints are rigidness of thinking and siloed actions of health system actors, complexity of changing the existing regulations and structures, little understanding of mHealth use and the role of clinicians, and risk of further polarization of the population.ConclusionsThis study provides a comprehensive look at mHealth in the Swiss health system. It becomes apparent that strong governance is inevitable to foster a sustainable data strategy and to reconcile the different interests of stakeholders. The use of mHealth will add value but will not necessarily reduce the burden on the system caused by emerging societal needs and changing disease prevalence.

Project description:IntroductionSexual and reproductive health problems are one of the top five risk factors for disability in the developing world. The rates of sexual health problems in most African countries are overwhelming, which is why HIV and other STIs are still such a challenge in sub-Saharan Africa. Talking about sex in most African countries is a taboo, leading to common myths and misconceptions that ultimately impact community sexual health.MethodsIn this study, we conducted 11 key stakeholder individual interviews with community, religious, political, and health leaders (sexual health stakeholders) in Tanzania. Qualitative content analysis was used to analyze all the materials.ResultsTwo main categories merged from the analysis. The first category, "Ambiguities about sexual health" focused on societal and political misconceptions and identified ten myths or misconceptions common in Tanzania. Stakeholders highlighted the confusion that happens when different information about sexual health is presented from two different sources (e.g., community leaders/peers and political leaders), which leaves the community and community leaders unsure which one is reliable. The second category, "Practical dilemmas in serving clients", addressed a range of professional and religious dilemmas in addressing sexual health concerns. This included the inability of religious leaders and health care providers to provide appropriate sexual health care because of internal or external influences.ConclusionMyths and misconceptions surrounding sexual health can prevent communities from adequately addressing sexual health concerns, and make it more difficult for healthcare providers to comfortably provide sexual health care to patients and communities. Stakeholders affirmed a need to develop a sexual health curriculum for medical, nursing and midwifery students because of the lack of education in this area. Such a curriculum needs to address nine common myths which were identified through the interviews.

Project description:BackgroundDespite significant progress in the control of oral diseases since the discovery of fluoride in the 1940s, dental caries and periodontal diseases continue to affect a significant proportion of the population, particularly socially disadvantaged and lower socioeconomic groups. The National Health Service in England provides preventive advice and treatments as part of an oral health assessment, and evidence-based guidance recommends the use of fissure sealants and topical fluorides in addition to dietary and oral hygiene advice. Although oral health promotion and education have become expected parts of dental care, the need for restorative treatments remains relatively high. We aimed to explore how barriers to preventive advice and treatment for NHS patients may be hindering the provision of prevention in oral health to patients from the perspectives of multiple key stakeholders.MethodsSemi-structured interviews and focus groups were undertaken between March 2016-February 2017 with four groups of stakeholders: dentists, insurers, policy makers and patient participants. The interviews were analysed using deductive, reflexive thematic analysis.ResultsThirty-two stakeholders participated: 6 dentists, 5 insurers, 10 policy makers, and 11 patient participants. Four themes were developed: Perspectives on the clarity of oral health messaging and patient's knowledge, The variability of prioritising prevention, Influences of the dentist-patient relationship on effective communication and Motivation to enact positive oral health behaviours.ConclusionsThe findings from this research indicate that patients' knowledge of and priority placed on prevention is variable. Participants believed that more targeted education could be valuable in enhancing these. A patient's relationship with their dentist could also influence their level of knowledge through the information shared with them, their receptivity to the preventive messages and the value they place on it. However, even with knowledge, prioritising prevention and a good patient-dentist relationship, without motivation to engage in preventive behaviour the impact of these is reduced. Our findings are discussed in relation to the COM-B model of behaviour change.

Project description:BackgroundDeveloping, implementing and evaluating worksite health promotion requires dealing with all stakeholders involved, such as employers, employees, occupational physicians, insurance companies, providers, labour unions and research and knowledge institutes. Although worksite health promotion is becoming more common, empirical research on ethical considerations of worksite health promotion is scarce.MethodsWe explored the views of stakeholders involved in worksite health promotion in focus group discussions and we described the ethical considerations that result from differences between these views. The focus group discussions were organised per stakeholder group. Data were analysed according to the constant comparison method.ResultsOur analyses show that although the definition of occupational health is the same for all stakeholders, namely 'being able to perform your job', there seem to be important differences in the views on what constitutes a risk factor to occupational health. According to the employees, risk factors to occupational health are prevailingly job-related. Labour unions agree with them, but other stakeholders, including the employer, particularly see employee-related issues such as lifestyle behaviour as risk factors to occupational health. The difference in definition of occupational health risk factors translates into the same categorisation of worksite health promotion; employee-related activities and work-related activities. The difference in conceptualisation of occupational health risk factors and worksite health promotion resonates in the way stakeholders understand 'responsibility' for lifestyle behaviour. Even though all stakeholders agree on whose responsibility lifestyle behaviour is, namely that of the employee, the meaning of 'responsibility' differs between employees, and employers. For employees, responsibility means autonomy, while for employers and other stakeholders, responsibility equals duty. This difference may in turn contribute to ambivalent relationships between stakeholders.ConclusionAll stakeholders, including employees, should be given a voice in developing, implementing and evaluating worksite health promotion. Moreover, since stakeholders agree on lifestyle being the responsibility of the employee, but disagree on what this responsibility means (duty versus autonomy), it is of utmost importance to examine the discourse of stakeholders. This way, ambivalence in relationships between stakeholders could be prevented.

Project description:BACKGROUND:Increase in global health research undertaken in resource poor settings in the last decade though a positive development has raised ethical concerns relating to potential for exploitation. Some of the suggested strategies to address these concerns include calls for providing universal standards of care, reasonable availability of proven interventions and more recently, promoting the overall social value of research especially in clinical research. Promoting the social value of research has been closely associated with providing fair benefits to various stakeholders involved in research. The debate over what constitutes fair benefits; whether those that addresses micro level issues of justice or those focusing on the key determinants of health at the macro level has continued. This debate has however not benefited from empirical work on what stakeholders consider fair benefits. This study explores practical experiences of stakeholders involved in global health research in Kenya, over what benefits are fair within a developing world context. METHODS AND RESULTS:We conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups.The range of benefits articulated by stakeholders addresses both micro and macro level concerns for justice by for instance, seeking to engage with interests of those facilitating research, and the broader systemic issues that make resource poor settings vulnerable to exploitation. We interpret these views to suggest a need for global health research to engage with current crises that face people in these settings as well as the broader systemic issues that produce them. CONCLUSION:Global health research should provide benefits that address both the micro and macro level issues of justice in order to forestall exploitation. Embracing the two is however challenging in terms of how the various competing interests/needs should be balanced ethically, especially in the absence of structures to guide the process. This challenge should point to the need for greater dialogue to facilitate value clarification among stakeholders.

Project description:Aquaponics is an agricultural practice incorporating aquaculture and hydroponic principles. This study assesses the current system design and production practices of the aquaponic industry, compares these metrics by stakeholder group, identifies trends, and provides recommendations for future development. An electronic survey of aquaponic stakeholders was conducted from December 2019 to June 2020 targeting hobbyists, producers, and educators from various aquaponic-focused professional associations, email and social media groups. Of 378 total responses, 84% came from the United States and were clustered in plant hardiness zones five to nine. Aquaponic systems were commonly homemade/do-it-yourself (DIY), many of which incorporated commercially available (turn-key) technology. Most growers used coupled systems that integrated recirculating aquaculture systems and either deep-water culture (DWC) or media bed hydroponic units. Common plant lighting sources were sunlight and light emitting diode (LED). Water sources were typically municipal or wells. Personal labor input was typically less than 20 hrs/wk. Funding sources were primarily personal funds, followed by government grants, and private investor funds. System sizes varied greatly, but the median area was 50 to 500 ft2 for hobbyists and educators and 500 to 3,000 ft2 for producers. Respondents commonly sold vegetable produce, training and education, food fish, and microgreens. Tilapia and ornamental fish were commonly grown, with 16 other species reported. Common crops were lettuce, leafy greens, basil, tomatoes, peppers, and herbs with many additional lesser-grown crops reported, including cannabis. Overall, the industry still growing, with a large portion of stakeholders having less than two years of experience. However, veteran growers have remained in operation, particularly in the producer and educator groups. The survey results suggest a shift away from outdoor systems, media beds, tomatoes, ornamental fish, and perch production, and a shift toward decoupled systems, DWC, drip irrigation, and wicking beds, larger system area, leafy greens, and trout/salmon production compared to previous industry surveys. The reduced diversity of plant species grown suggest some level of crop standardization. Commercial producers tended to sell more types of products than other stakeholders, suggesting that diversification of offerings may be key to profitability. The combined production area specified by respondents indicates the industry has grown substantially in recent years. Finally, the presence of bank loan-funded operations suggests increased knowledge and comfort with aquaponics among lenders.

Dataset Information

A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.

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A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.

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