Towards rigour in qualitative health and social research across European partnerships.
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ABSTRACT:
SUBMITTER: Billings J
PROVIDER: S-EPMC5547687 | biostudies-other | 2004 Dec
REPOSITORIES: biostudies-other
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Project description:The European Union (EU) initiative on the Digital Transformation of Health and Care (Digicare) aims to provide the conditions necessary for building a secure, flexible, and decentralized digital health infrastructure. Creating a European Health Research and Innovation Cloud (HRIC) within this environment should enable data sharing and analysis for health research across the EU, in compliance with data protection legislation while preserving the full trust of the participants. Such a HRIC should learn from and build on existing data infrastructures, integrate best practices, and focus on the concrete needs of the community in terms of technologies, governance, management, regulation, and ethics requirements. Here, we describe the vision and expected benefits of digital data sharing in health research activities and present a roadmap that fosters the opportunities while answering the challenges of implementing a HRIC. For this, we put forward five specific recommendations and action points to ensure that a European HRIC: i) is built on established standards and guidelines, providing cloud technologies through an open and decentralized infrastructure; ii) is developed and certified to the highest standards of interoperability and data security that can be trusted by all stakeholders; iii) is supported by a robust ethical and legal framework that is compliant with the EU General Data Protection Regulation (GDPR); iv) establishes a proper environment for the training of new generations of data and medical scientists; and v) stimulates research and innovation in transnational collaborations through public and private initiatives and partnerships funded by the EU through Horizon 2020 and Horizon Europe.
| S-EPMC7029532 | biostudies-literature
Project description:At the 10th anniversary of the European Journal of Ageing in 2013, this article makes an attempt towards a comprehensive overview of European ageing research (EAR) from the three perspectives of this Journal: the social, behavioural and health related domains. First, we provide some general observations on the state of EAR, noting the difficulties of defining this field. Second, we provide a description of EAR and its current trends and characteristics in terms of research themes and theoretical directions. Towards this end, we use the 10 volumes of the European Journal of Ageing as well as other available information. Third, we address the infrastructure of EAR as reflected in major studies, looking at data availability, language, education and training. Given this background, we derive a set of six recommendations to further consolidate and expand EAR.
| S-EPMC5549214 | biostudies-other
Project description:There are increasing calls to decolonise aspects of science, and global health is no exception. The decolonising global health movement acknowledges that global health research perpetuates existing power imbalances and aims to identify concrete ways in which global health teaching and research can overcome its colonial past and present. Using the context of clinical trials implemented through transnational research partnerships (TRPs) as a case study, this narrative review brings together perspectives from clinical research and social science to lay out specific ways in which TRPs build on and perpetuate colonial power relations. We will explore three core components of TRPs: participant experience, expertise and infrastructure, and authorship. By combining a critical perspective with recently published literature we will recommend specific ways in which TRPs can be decolonised. We conclude by discussing decolonising global health as a potential practice and object of research. By doing this we intend to frame the decolonising global health movement as one that is accessible to everyone and within which we can all play an active role.
| S-EPMC7651076 | biostudies-literature
Project description:BackgroundThe Arab Muslim and Chaldean Christian American community is unified by language but culturally diverse. Researchers are challenged to engage the Arab/Chaldean community to meet immigrant health needs. Arabs/Chaldeans are identified as white in clinical data sets making it difficult to identify health behaviours and patterns unique to the community.ObjectivesTo explore the views of members of the Arab/Chaldean community, including researchers and the lay public, regarding health research participation and the role of clinicians, researchers and community leaders in the research process.MethodsA qualitative study of Arab and Chaldean adults and researchers conducted in a US community with a large Arab/Chaldean population. Five semi-structured focus group discussions were triangulated with five in-depth semi-structured interviews with Arab or Chaldean primary care researchers. Responses were audio-recorded and transcribed verbatim. Transcripts were coded and thematically analysed, and findings confirmed with community representatives.ResultsThree themes were identified: (i) research expectations: risks and benefits; (ii) health care environment: clinicians as recruiters and (iii) research participations: risks and benefits. Themes captured concerns with social relationships, reputation or trust and the cost and benefit of research participation. In the Arab/Chaldean community, institutional and political fears and distrust are amplified. Respect for physicians, teachers and faith leaders connected with or recruiting for studies enhances likelihood of research participation.ConclusionClinical researchers should address the cultural and immigration histories of Arab/Chaldean research participants. Studies that maximize trust will minimize participation bias and lay the groundwork for improved health. Institutional, sociocultural and personal factors require a pre-study phase to engage and educate participants.
| S-EPMC6769398 | biostudies-literature
Project description:Background Although patient and carer involvement in research is well-developed in many countries, this area has been largely overlooked in South-East European countries. Aims To explore experiences of patients participating in newly set up lived experience advisory panels (LEAPs) within a European Commission funded, large-scale, multi-country mental health research project that focused on improving treatment of individuals with psychosis. Method Twenty-one mental health patients were individually interviewed across five countries: Bosnia and Herzegovina, Kosovo, Montenegro, North Macedonia and Serbia. Topic guides covered the experience of participating in LEAPs and their sustainability. Data were analysed by framework analysis. Results Seven themes were identified about participating in LEAPs: predominantly positive evaluation, high levels of participant motivation, therapeutic benefits for participants, few challenges, various future perspectives, positive appraisal of the research project and mixed reflections on mental healthcare. Overall, patients’ experiences were positive and enabled them to feel empowered. Patients expressed interest in remaining involved in advisory panels. Additionally, they felt that they could potentially contribute to the work of non-government organisations. Conclusions This study is among the few studies exploring patient participation in research projects, and the first such study conducted in South-East European countries. Patients are highly motivated for this engagement, which has the potential to empower them to take on new social roles. Significant efforts at the national level are needed in each country, to make patient involvement in research standard practice.
| S-EPMC8811779 | biostudies-literature
Project description:BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social licence for achieving such ethical governance.Main textWe performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence.ConclusionsThere are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance.
| S-EPMC8353823 | biostudies-literature
Project description:BACKGROUND:A twinning partnership is a formal and substantive collaboration between two districts to improve their performance in providing primary healthcare services. The 'win-win' twinning partnership pairs are categorized under relatively high and low-performing districts. The purpose of this formative evaluation is to use the empirically derived systems model as an analytical framework to systematically document the inputs, throughputs and outputs of the twinning partnership strategy. METHODS:This explanatory sequential mixed method study design was conducted from October 2018 to September 2019, in Amhara, Oromia, Southern, Nations, Nationalities and Peoples' (SNNP) and Tigray regions. The quantitative research approach used an observational design which consists of three measurements: at baseline (October 2018), midterm (March 2019) and end-line (September 2019), and the qualitative approach employed a case study. Qualitative data was collected using interviewer-guided semi-structured interview tools. The data were transcribed verbatim, translated from Amharic and Afan Oromo into English and analyzed through a theoretical framework named the Bergen Model of Collaborative Functioning (BMCF). Quantitative data were extracted from routine health management information system. The results are presented as averages, percentages and graphs. To claim statistical significance, non-parametric tests: Friedman test at (p?<?0.05) and Wilcoxon signed ranks test (p?<?0.017) were analyzed. RESULTS:The District Health System Performance (DHSP) was determined using data collected from eight districts. At baseline, the mean DHSP score was 50.97, at midterm, it was 60.3 and at end-line, it was 72.07. There was a strong degree and statistically significant relationship between baseline, midterm and end-line DHSP scores (r?>?0.978**), using the Friedman test ?2(2)?=?16.000, p?=?0.001. Post hoc analysis using Wilcoxon signed-rank test was conducted with a Bonferroni correction and the results elicit higher DHSP values from baseline to midterm and from midterm to end-line with significance level set at p?<?0.017. The qualitative results of the case study revealed that scanning the mission of the twinning partnership and focusing on a shared vision coupled with mobilizing internal and external resources were the fundamental input elements for successful twinning partnerships at the district level. In addition, the context of pursuing Universal Health Coverage (UHC) through achieving transformed districts can be enhanced through deploying skilled and knowledgeable leadership, defining clear roles and responsibilities for all stakeholders, forming agreed detailed action plans, and effective communication that leads to additive results and synergy. The twinning partnership implementing districts benefit from the formal relationship and accelerate their performances towards meeting the criteria of transformed districts in Ethiopia. CONCLUSIONS:Twinning partnerships help to accelerate the health system's performance in achieving the district transformation criteria. Therefore, scaling up the implementation of the twinning partnership strategy is recommended.
| S-EPMC7507737 | biostudies-literature
Project description:Collaborative research partnerships are necessary to answer key questions in global mental health, to share expertise, access funding and influence policy. However, partnerships between low- and middle-income countries (LMIC) and high-income countries have often been inequitable with the provision of technical knowledge flowing unilaterally from high to lower income countries. We present the experience of the Programme for Improving Mental Health Care (PRIME), a LMIC-led partnership which provides research evidence for the development, implementation and scaling up of integrated district mental healthcare plans in Ethiopia, India, Nepal, South Africa and Uganda. We use Tuckman's first four stages of forming, storming, norming and performing to reflect on the history, formation and challenges of the PRIME Consortium. We show how this resulted in successful partnerships in relation to management, research, research uptake and capacity building and reflect on the key lessons for future partnerships.
| S-EPMC6980236 | biostudies-literature
Project description:This themed issue on global health research has come at an opportune time in the middle of the ongoing global public health crisis arising from the coronavirus disease (COVID-19) pandemic which has claimed nearly 756,000 lives in 210 countries and territories around the world as of August 15, 2020. The public health crisis underscores the importance of global health research partnerships and collaborations to develop and evaluate the requisite health technologies to assist in containing COVID-19, other diseases, and health-related concerns that defy national borders. The 17 Sustainable Development Goals (SDGs), adopted by the member countries of the United Nations in September 2015, provide a framework for global development efforts including global health research. SDG3, which promotes health and well-being for the world populations across the age spectrum, highlights disease areas for special focus which can be adapted in specific global health research programs to serve local health needs. SDG17 promotes partnerships between high income (HIC) and low and middle-income countries (LMIC) for sustainable and equitable global development. However, given the wide disparities in fiscal and overall capacity for research between researchers in HIC and their counterparts in LMIC as well as the greater vulnerabilities of the LMIC communities when serving as research locations, a spotlight on the nature of such global health research partnerships in the context of the SDGs is desirable. This is to ensure that they are meaningful and mutually-beneficial partnerships which address local health concerns and promote long-term value for the communities involved. The objective of this commentary is, therefore, to provide a brief overview of the SDGs by way of context; explore the power differences at play when researchers from HIC are seeking research opportunities in LMIC; examine the social determinants of health and the disproportionate burden of global diseases carried by populations in LMIC to establish their vulnerability; discuss global research partnerships; and attempt to make a case for why community-based participatory research may be the preferred type of global health research partnership in the context of the SDGs.
| S-EPMC7449894 | biostudies-literature
Project description:This study investigated health sciences librarians' knowledge and skill-based readiness to partner on sponsored research involving human participants. The authors developed and deployed, at two time points, a web-based survey on nine indicators of research activities with response choices reflecting the transtheoretical model of stages of behavior change. Librarians with research experience or membership in the Medical Library Association Research Section reported higher levels of having completed indicators. Our results suggest that creating awareness in precontemplation responders could encourage skill development. Mentoring and continuing education could support librarians who are contemplating or preparing to perform indicator activities.
| S-EPMC4404862 | biostudies-other