scholarly journals Evidence on User-Led Innovation in Diabetes Technology (The OPEN Project): Protocol for a Mixed Methods Study

10.2196/15368 ◽  
2019 ◽  
Vol 8 (11) ◽  
pp. e15368 ◽  
Author(s):  
Shane O'Donnell ◽  
Dana Lewis ◽  
María Marchante Fernández ◽  
Mandy Wäldchen ◽  
Bryan Cleal ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Artificial Pancreas ◽  
Clinical Effectiveness ◽  
Research Process ◽  
Research Project ◽  
Horizon 2020 ◽  
Research And Innovation ◽  
The Open Project ◽  
Do It Yourself

Background Digital innovations in health care have traditionally followed a top-down pathway, with manufacturers leading the design and production of technology-enabled solutions and those living with chronic conditions involved only as passive recipients of the end product. However, user-driven open-source initiatives in health care are becoming increasingly popular. An example is the growing movement of people with diabetes, who create their own “Do-It-Yourself Artificial Pancreas Systems” (DIYAPS). Objective The overall aim of this study is to establish the empirical evidence base for the clinical effectiveness and quality-of-life benefits of DIYAPS and identify the challenges and possible solutions to enable their wider diffusion. Methods A research program comprising 5 work packages will examine the outcomes and potential for scaling up DIYAPS solutions. Quantitative and qualitative methodologies will be used to examine clinical and self-reported outcome measures of DIYAPS users. The majority of members of the research team live with type 1 diabetes and are active DIYAPS users, making Outcomes of Patients’ Evidence With Novel, Do-It-Yourself Artificial Pancreas Technology (OPEN) a unique, user-driven research project. Results This project has received funding from the European Commission’s Horizon 2020 Research and Innovation Program, under the Marie Skłodowska-Curie Action Research and Innovation Staff Exchange. Researchers with both academic and nonacademic backgrounds have been recruited to formulate research questions, drive the research process, and disseminate ongoing findings back to the DIYAPS community and other stakeholders. Conclusions The OPEN project is unique in that it is a truly patient- and user-led research project, which brings together an international, interdisciplinary, and intersectoral research group, comprising health care professionals, technical developers, biomedical and social scientists, the majority of whom are also living with diabetes. Thus, it directly addresses the core research and user needs of the DIYAPS movement. As a new model of cooperation, it will highlight how researchers in academia, industry, and the patient community can create patient-centric innovation and reduce disease burden together. International Registered Report Identifier (IRRID) PRR1-10.2196/15368

scholarly journals Evidence on User-Led Innovation in Diabetes Technology (The OPEN Project): Protocol for a Mixed Methods Study (Preprint)

2019 ◽  
Author(s):  
Shane O'Donnell ◽  
Dana Lewis ◽  
María Marchante Fernández ◽  
Mandy Wäldchen ◽  
Bryan Cleal ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Artificial Pancreas ◽  
Clinical Effectiveness ◽  
Research Process ◽  
Research Project ◽  
Horizon 2020 ◽  
Research And Innovation ◽  
The Open Project ◽  
Do It Yourself

BACKGROUND Digital innovations in health care have traditionally followed a top-down pathway, with manufacturers leading the design and production of technology-enabled solutions and those living with chronic conditions involved only as passive recipients of the end product. However, user-driven open-source initiatives in health care are becoming increasingly popular. An example is the growing movement of people with diabetes, who create their own “Do-It-Yourself Artificial Pancreas Systems” (DIYAPS). OBJECTIVE The overall aim of this study is to establish the empirical evidence base for the clinical effectiveness and quality-of-life benefits of DIYAPS and identify the challenges and possible solutions to enable their wider diffusion. METHODS A research program comprising 5 work packages will examine the outcomes and potential for scaling up DIYAPS solutions. Quantitative and qualitative methodologies will be used to examine clinical and self-reported outcome measures of DIYAPS users. The majority of members of the research team live with type 1 diabetes and are active DIYAPS users, making <italic>Outcomes of Patients’ Evidence With Novel, Do-It-Yourself Artificial Pancreas Technology</italic> (OPEN) a unique, user-driven research project. RESULTS This project has received funding from the European Commission’s Horizon 2020 Research and Innovation Program, under the Marie Skłodowska-Curie Action Research and Innovation Staff Exchange. Researchers with both academic and nonacademic backgrounds have been recruited to formulate research questions, drive the research process, and disseminate ongoing findings back to the DIYAPS community and other stakeholders. CONCLUSIONS The OPEN project is unique in that it is a truly patient- and user-led research project, which brings together an international, interdisciplinary, and intersectoral research group, comprising health care professionals, technical developers, biomedical and social scientists, the majority of whom are also living with diabetes. Thus, it directly addresses the core research and user needs of the DIYAPS movement. As a new model of cooperation, it will highlight how researchers in academia, industry, and the patient community can create patient-centric innovation and reduce disease burden together. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/15368

Making Ethics Work in Collaborative Projects

2005 ◽  
Vol 11 (3) ◽  
pp. 101
Author(s):  
Emily Mauldon
Keyword(s):  
Health Care ◽  
Primary Health Care ◽  
Research Ethics ◽  
Health Care Professionals ◽  
Ethics Committees ◽  
Research Process ◽  
Ethical Review ◽  
Ethical Research ◽  
Team Members ◽  
Primary Health

This article discusses problems a research team had managing their ethical obligations during a short project, and considers the implications of these problems for better understanding and carrying out ethical research in the future. Two key points will be proposed. Initially, it will be argued that the culture of ethical research as articulated within the research community may not be universally accepted within the primary health care sector. The nature of "ethical conduct" within clinical practice, service provision and research is not the same. Further, practical difficulties the researchers experienced while trying to gain approval from ethics committees and implement the proposed research plan highlight some ways in which institutional ethical review processes are structurally unsuited to the requirements of small collaborative projects. Understanding the different ways in which the term "ethics" is used will allow for a more expedient translation of concepts between different health professionals. Recognising the practical constraints ethical review places on the research process may help reduce some of the frustration primary health care professionals can experience when faced with the requirements of research ethics committees. Due to the history of, and cultural commitment to, ethical research within the university sector, those with formal academic training in research are well placed to assume responsibility for managing the ethics process when involved in cross-sectoral research. This responsibility may include the need to educate team members and study participants about the importance of research ethics.

scholarly journals Involving Patients in Research? Responsible Research and Innovation in Small- and Medium-Sized European Health Care Enterprises*

2018 ◽  
Vol 28 (1) ◽  
pp. 144-152 ◽  
Author(s):  
KALYPSO IORDANOU
Keyword(s):  
Health Care ◽  
Research Ethics ◽  
Innovation Process ◽  
Ethics Committees ◽  
Research Process ◽  
Responsible Research And Innovation ◽  
Research And Innovation ◽  
Governance Tools ◽  
European Health ◽  
Responsible Research

Abstract:Health research is generally undertaken to resolve existing health problems or enhance existing solutions. Research ethics committees have been the main governance tool for research for more than half a century. Their role is to ensure that research is undertaken ethically. To close the increasing gap between science and society, other governance tools are required. The European Commission recommends and actively promotes the policy of responsible research and innovation (RRI). In addition to sound research ethics, a key feature of RRI is the involvement of different societal stakeholders throughout the research process.But how accepted is the involvement of societal stakeholders in the research of small- and medium-sized enterprises (SMEs) in the health care sector? This question is examined based on 18 in-depth interviews with private health care industry representatives from across Europe in companies focusing on developing medical device technology. Findings suggest that SMEs are reluctant to undertake research involving patients, especially in the early stages of the research and innovation process. For some SMEs this is due to concerns about the dangers of raising expectations they cannot meet, while for others the main concerns are increasing costs and producing less competitive products. Implications of the research findings are discussed.

scholarly journals Health Care Professionals’ Perceptions of Pay-for-Performance in Practice: A Qualitative Metasynthesis

2020 ◽  
Vol 57 ◽  
pp. 004695802091749
Author(s):  
Barbara Martin ◽  
Jacqueline Jones ◽  
Matthew Miller ◽  
Rachel Johnson-Koenke
Keyword(s):  
Health Care ◽  
Health Outcomes ◽  
Performance Measurement ◽  
Health Care Professionals ◽  
Financial Incentives ◽  
Pay For Performance ◽  
Research Process ◽  
Future Research ◽  
Limiting Factor ◽  
Integrate Health Care

Incentive-based pay-for-performance (P4P) models have been introduced during the last 2 decades as a mechanism to improve the delivery of evidence-based care that ensures clinical quality and improves health outcomes. There is mixed evidence that P4P has a positive effect on health outcomes and researchers cite lack of engagement from health care professionals as a limiting factor. This qualitative metasynthesis of existing qualitative research was conducted to integrate health care professionals’ perceptions of P4P in clinical practice. Four themes emerged during the research process: positive perceptions of the value of performance measurement and associated financial incentives; negative perceptions of the performance measurement and associated financial incentives; perceptions of how P4P programs influence the quality/appropriateness of care; and perceptions of the influence of P4P program on professional roles and workplace dynamics. Identifying factors that influence health care professionals’ perceptions about this type of value-based payment model will guide future research.

scholarly journals Kierunki polityki UE w zakresie opieki zdrowotnej związanej ze starzeniem się społeczeństwa

2018 ◽  
Vol 26 ◽  
pp. 137-147
Author(s):  
Agnieszka Regiec
Keyword(s):  
Health Care ◽  
Health Care Policy ◽  
Well Being ◽  
Ageing Population ◽  
Horizon 2020 ◽  
Research And Innovation ◽  
Societal Challenges ◽  
Policy Objectives ◽  
European Health ◽  
The Eu

EU health care policy objectives in connection with the society growing olderEuropean Union’s society is aging, which generates the increase in needs regarding health care and its financial repercussions. In order to meet economic needs increased by ageing population, the Health for Growth Programme was commenced. Moreover Horizon 2020, the EU Framework Programme for Research and Innovation, will focus on, amongst societal challenges, health, demographic change and well-being. One of the other milestones for European health care was entering into force the Directive on the application of patients’ rights in cross-border healthcare.

scholarly journals The 'Good' refugee is traumatized: post-traumatic stress disorder as a measure of credibility in the Canadian refugee determination system

2021 ◽  
Author(s):  
Chantal Spade
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Social Construction ◽  
Health Care Professionals ◽  
Research Question ◽  
Post Traumatic Stress ◽  
Research Project ◽  
Refugee Population ◽  
Determination Process ◽  
Elite Interviews

Through a social construction theoretical framework, it is explored how the Immigration and Refugee Board utilizes a diagnosis of PTSD as a measure of credibility during the refugee determination process, and how this is deemed problematic due to the barriers that exist for the refugee population in the mental health system. This research project was framed around two primary research question: (1)how does a mental health diagnosis of PTSD impact the refugee determination process in Canada? And, (2) is a diagnosis of PTSD for a refugee claimant accurate and appropriate? Semi-structured elite interviews were conducted with health care professionals who interact with the refugee population in Toronto. The findings indicate that there is an identifiable paradox between PTSD being utilized as a measure of credibility and PTSD being a social construction that is rendered inappropriate for individuals who originate in a non-Western culture. This research project demonstrates the existence of the paradox by analyzing the multi-faceted barriers that refugee claimants face in proving that their stories are credible, and the barriers in the accessibility and delivery of mental health care in Canada.

scholarly journals The 'Good' refugee is traumatized: post-traumatic stress disorder as a measure of credibility in the Canadian refugee determination system

2021 ◽  
Author(s):  
Chantal Spade
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Social Construction ◽  
Health Care Professionals ◽  
Research Question ◽  
Post Traumatic Stress ◽  
Research Project ◽  
Refugee Population ◽  
Determination Process ◽  
Elite Interviews

Through a social construction theoretical framework, it is explored how the Immigration and Refugee Board utilizes a diagnosis of PTSD as a measure of credibility during the refugee determination process, and how this is deemed problematic due to the barriers that exist for the refugee population in the mental health system. This research project was framed around two primary research question: (1)how does a mental health diagnosis of PTSD impact the refugee determination process in Canada? And, (2) is a diagnosis of PTSD for a refugee claimant accurate and appropriate? Semi-structured elite interviews were conducted with health care professionals who interact with the refugee population in Toronto. The findings indicate that there is an identifiable paradox between PTSD being utilized as a measure of credibility and PTSD being a social construction that is rendered inappropriate for individuals who originate in a non-Western culture. This research project demonstrates the existence of the paradox by analyzing the multi-faceted barriers that refugee claimants face in proving that their stories are credible, and the barriers in the accessibility and delivery of mental health care in Canada.

scholarly journals Evaluating Indian Professionals Knowledge for Innovation and Need for Patent Education

2021 ◽  
Vol 3 (2) ◽  
pp. 68-79
Author(s):  
Sonu Gupta ◽  
Ravinder Nath Bansal ◽  
Surender Pal Singh Sodhi ◽  
Gursimrat Kaur Brar
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Cross Sectional Study ◽  
Patent System ◽  
Educational Institutions ◽  
Medical Sciences ◽  
Cross Sectional ◽  
Private Practitioners ◽  
Research And Innovation ◽  
Treatment Procedures

The Patent system encourages invention, disclosure, and investment. Several patents are granted in medical sciences, but a misconception remains with health care professionals regarding criteria for patentability of their valuable invention. Though the Indian Patent system has promoted the progress of science and technology, its scope has not been extended to treatment procedures in medical and dental sciences. This research was conducted to assess the knowledge and awareness of health care professionals about the Indian patent system. The study was conducted to assess the awareness and knowledge of the Indian patent system and the need for patent education among professionals of different streams. This cross-sectional study was carried out among private practitioners of different streams (medical and dental, ayurvedic, and homeopathic). Results made a poor show of patent education and knowledge. Only 6% of participants had more than 50% knowledge regarding this topic. Since educational institutions are opting for accreditations. Research and innovation is an important criterion for that. This study highlighted that there is a great need for patent education for professional and institutional growth.

scholarly journals Dialogue and deliberation: New approaches to including patients in setting health and healthcare research agendas

2018 ◽  
Vol 17 (4) ◽  
pp. 429-450 ◽  
Author(s):  
Tineke A Abma
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Agenda Setting ◽  
Health Research ◽  
Research Agenda ◽  
Health Care Services ◽  
Research Process ◽  
Healthcare Research ◽  
Power Dynamics ◽  
Dialogue Model

Collective participation of patients in health and medical research is an emerging trend. The literature falls, however, short on process descriptions focusing on the power dynamics when sharing power with patients in the research process. This article therefore aims to generate knowledge on how to involve patients and redress power imbalances in health research agenda setting. The context for the study was health research agenda setting on Parkinson’s Disease in The Netherlands. The dialogue model was used: a multistakeholder and multiphased process for the coproduction of research agenda. Patients with Parkinson were involved in all stages of the agenda setting. It appeared to be crucial for people with Parkinson to create a free, protective, and communicative space of mutual encouragement to develop power from within and to articulate their voice. This prepared them for meaningful deliberations with health-care professionals, researchers, and funding agencies. Ultimately, these deliberations resulted in a relevant and useful research agenda that better enable health-care services to meet the needs and expectations of patients.

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