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Varsity medical ethics debate 2018: constant health monitoring - the advance of technology into healthcare.

ABSTRACT: The 2018 Varsity Medical Ethics debate convened upon the motion: "This house believes that the constant monitoring of our health does more harm than good". This annual debate between students from the Universities of Oxford and Cambridge is now in its tenth year. This year's debate was hosted at the Oxford Union on 8th of February 2018, with Oxford winning for the Opposition, and was the catalyst for the collation and expansion of ideas in this paper.New technological devices have the potential to enhance patient autonomy, improve patient safety, simplify the management of chronic diseases, increase connectivity between patients and healthcare professionals and assist individuals to make lifestyle changes to improve their health. However, these are pitted against an encroachment of technology medicalising the individual and home, an exacerbation of health inequalities, a risk to the security of patient data, an alteration of the doctor-patient relationship dynamic and an infringement on individual self-identity. This paper will draw upon and develop these concepts, while contending arguments for and against constant health monitoring. This is not a review of medical devices and health monitoring, but a reflective development and more detailed elaboration of the main points highlighted in the 2018 Varsity Medical Ethics debate.

SUBMITTER: Gilmartin C

PROVIDER: S-EPMC6122183 | biostudies-other | 2018 Sep

REPOSITORIES: biostudies-other

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Varsity medical ethics debate 2018: constant health monitoring - the advance of technology into healthcare.

Gilmartin Chris C Arbe-Barnes Edward H EH Diamond Michael M Fretwell Sasha S McGivern Euan E Vlazaki Myrto M Zhu Limeng L

Philosophy, ethics, and humanities in medicine : PEHM 20180903 1

The 2018 Varsity Medical Ethics debate convened upon the motion: "This house believes that the constant monitoring of our health does more harm than good". This annual debate between students from the Universities of Oxford and Cambridge is now in its tenth year. This year's debate was hosted at the Oxford Union on 8th of February 2018, with Oxford winning for the Opposition, and was the catalyst for the collation and expansion of ideas in this paper.New technological devices have the potential ...[more]

PMID: 30176930

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Project description:IntroductionThis article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. "Smart Medical Information Technology for Healthcare (SMITH)" is one of four consortia funded by the German Medical Informatics Initiative (MI-I) to create an alliance of universities, university hospitals, research institutions and IT companies. SMITH's goals are to establish Data Integration Centers (DICs) at each SMITH partner hospital and to implement use cases which demonstrate the usefulness of the approach.ObjectivesTo give insight into architectural design issues underlying SMITH data integration and to introduce the use cases to be implemented.Governance and policiesSMITH implements a federated approach as well for its governance structure as for its information system architecture. SMITH has designed a generic concept for its data integration centers. They share identical services and functionalities to take best advantage of the interoperability architectures and of the data use and access process planned. The DICs provide access to the local hospitals' Electronic Medical Records (EMR). This is based on data trustee and privacy management services. DIC staff will curate and amend EMR data in the Health Data Storage.Methodology and architectural frameworkTo share medical and research data, SMITH's information system is based on communication and storage standards. We use the Reference Model of the Open Archival Information System and will consistently implement profiles of Integrating the Health Care Enterprise (IHE) and Health Level Seven (HL7) standards. Standard terminologies will be applied. The SMITH Market Place will be used for devising agreements on data access and distribution. 3LGM2 for enterprise architecture modeling supports a consistent development process.The DIC reference architecture determines the services, applications and the standardsbased communication links needed for efficiently supporting the ingesting, data nourishing, trustee, privacy management and data transfer tasks of the SMITH DICs. The reference architecture is adopted at the local sites. Data sharing services and the market place enable interoperability.Use casesThe methodological use case "Phenotype Pipeline" (PheP) constructs algorithms for annotations and analyses of patient-related phenotypes according to classification rules or statistical models based on structured data. Unstructured textual data will be subject to natural language processing to permit integration into the phenotyping algorithms. The clinical use case "Algorithmic Surveillance of ICU Patients" (ASIC) focusses on patients in Intensive Care Units (ICU) with the acute respiratory distress syndrome (ARDS). A model-based decision-support system will give advice for mechanical ventilation. The clinical use case HELP develops a "hospital-wide electronic medical record-based computerized decision support system to improve outcomes of patients with blood-stream infections" (HELP). ASIC and HELP use the PheP. The clinical benefit of the use cases ASIC and HELP will be demonstrated in a change of care clinical trial based on a step wedge design.DiscussionSMITH's strength is the modular, reusable IT architecture based on interoperability standards, the integration of the hospitals' information management departments and the public-private partnership. The project aims at sustainability beyond the first 4-year funding period.

Project description:IntroductionPublic health investigations, including research, in refugee populations are necessary to inform evidence-based interventions and care. The unique challenges refugees face (displacement, limited political protections, economic hardship) can make them especially vulnerable to harm, burden, or undue influence. Acute survival needs, fear of stigma or persecution, and history of trauma may present challenges to ensuring meaningful informed consent and establishing trust. We examined the recently published literature to understand the application of ethics principles in investigations involving refugees.MethodsWe conducted a preliminary review of refugee health literature (research and non-research data collections) published from 2015 through 2018 available in PubMed. Article inclusion criteria were: participants were refugees, topic was health-related, and methods used primary data collection. Information regarding type of investigation, methods, and reported ethics considerations was abstracted.ResultsWe examined 288 articles. Results indicated 33% of investigations were conducted before resettlement, during the displacement period (68% of these were in refugee camps). Common topics included mental health (48%) and healthcare access (8%). The majority (87%) of investigations obtained consent. Incentives were provided less frequently (23%). Most authors discussed the ways in which community stakeholders were engaged (91%), yet few noted whether refugee representatives had an opportunity to review investigational protocols (8%). Cultural considerations were generally limited to gender and religious norms, and 13% mentioned providing some form of post-investigation support.ConclusionsOur analysis is a preliminary assessment of the application of ethics principles reported within the recently published refugee health literature. From this analysis, we have proposed a list of best practices, which include stakeholder engagement, respect for cultural norms, and post-study support. Investigations conducted among refugees require additional diligence to ensure respect for and welfare of the participants. Development of a refugee-specific ethics framework with ethics and refugee health experts that addresses the need for stakeholder involvement, appropriate incentive use, protocol review, and considerations of cultural practices may help guide future investigations in this population.

Project description:ObjectiveTo identify recurrent themes, insights, and process recommendations from stakeholders in US organizations during the health information technology (HIT) modernization of an existing electronic health record (EHR) to a commercial-off-the-shelf product in both resource-plentiful settings and in a resource-constrained environment, the US Indian Health Service.Materials and methodsThirteen qualitative interviews with stakeholders in various organizations were conducted about HIT modernization efforts. Using a Theory of Change framework, recurring themes were identified and analyzed.ResultsThe interviewees emphasized the importance of organizational and process revision during modernization, converting historical data, and clinical and leadership involvement. HIT implementation required technological and infrastructure redesign, additional training, and workflow reconfiguration. Motivations for modernization included EHR usability dissatisfaction, revenue enhancements, and improved clinical operations. Decision-making strategies, primarily during HIT selection, included meetings with stakeholders. Successful modernization resulted in improvements in clinical operations, patient experience, and financial outlay.DiscussionExisting implementation frameworks fail to provide experiential feedback, such as implementation challenges, like data conversion, regulatory, functionality, and interoperability requirements. Regardless of the healthcare environment, HIT modernization requires the engagement of leadership and end-users during HIT selection and through all stages of the implementation to prepare people, processes, and technology. Organizations must iteratively define the technological, infrastructure, organizational, and workflow changes required for a successful HIT modernization effort.ConclusionsHIT modernization is an opportunity for organizational and technological change. Successful modernization requires a comprehensive, intentional, well-communicated, and multidisciplinary approach. Resource-constrained environments have the additional challenges of financial burdens, limited staffing, and unstable infrastructure.

Project description:BackgroundPromoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been intense debate within academic bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide.MethodsWe reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services.ResultsAccess to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries.ConclusionAlthough in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context.

Project description:Background: Due to rising healthcare expenditures, countries with publicly funded healthcare systems face challenges when providing newly approved expensive anti-cancer treatments to all eligible patients. In the Netherlands in 2015, the so-called Coverage Lock (CL), was introduced to help safeguard the sustainability of the healthcare system. Since then, newly approved treatments are no longer automatically reimbursed. Previous work has shown that as policies for access to CL treatments are lacking, patient access to non-reimbursed treatments is limited and variable, which raises ethical issues. The ethics of access were discussed in a series of multi-stakeholder dialogues in the Netherlands. Methods: Three dialogues were held in early 2023 and included physicians, health insurers, hospital executives, policymakers, patients, citizens, and representatives of pharmaceutical companies, patient and professional organizations. In advance, participants had received an 'argument scheme' featuring three models: 1) access based on third-party payment (e.g., by pharmaceutical companies, health insurers or hospitals) 2) access based on out-of-pocket payments by patients 3) no access to CL treatments. During the dialogues, participants were asked to discuss the merits of the ethical arguments for and against these models together, and ultimately to weigh them. The discussions were audio-taped, transcribed, coded, and thematically analyzed. Results: Generally, most stakeholders were in favour of allowing access-at least when treatments are clearly beneficial-to treatments in the CL. When discussing third-party payment, stakeholders favoured payment by pharmaceutical companies over payment by health insurers or hospitals, not wanting to usurp collective funds while cost-effectiveness assessments are still pending. Largely, stakeholders were not in favour of out-of-pocket payments, emphasizing solidarity and equal access as important pillars of the Dutch healthcare system. Recurrent themes included the conflict between individual and collective interests, shifting attitudes, withholding access as a means to put pressure on the system, and the importance of transparency about access to CL-treatments. Conclusion: Policies for access to non-reimbursed treatments should address stakeholders' concerns regarding transparency, equal access and solidarity, and loss of potential health benefits for patients. Multi-stakeholder dialogues are an important tool to help inform policy-making on access to newly approved (too) expensive treatments in countries facing challenges to the sustainability of healthcare systems.

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Varsity medical ethics debate 2018: constant health monitoring - the advance of technology into healthcare.

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Varsity medical ethics debate 2018: constant health monitoring - the advance of technology into healthcare.

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