24 research outputs found
Best practice guidance for creation and management of innovations in health care and information and communications technologies
Governments and publics in Europe and around the world have turned to innovation in response to the manifold economic, environmental, and societal challenges we are facing. However, innovations often end up in what is popularly termed as the “valley of death” between upstream creation and downstream product development and implementation. Consequently, the benefits of innovation do not always reach the citizens. In addition, critically informed governance of innovations matter because it allows steering of innovations in response to the values and end points desired by society. With the COVID-19 pandemic, we have witnessed the rise of digital health and new information and communications technologies (ICTs). The pandemic underscored the need for innovation governance between global North and the global South. We report and discuss, in this study, the development of the innXchange innovation wheel to improve innovation creation and management, using a case study of cooperation between Europe and Africa. The innovation wheel offers best practice guidance and framework to build capacity for innovation dimensions such as partnership mobilization, evaluation, and monitoring, not to mention innovation literacy. The framework emphasizes active engagement of all key stakeholders from the very beginning, also referred to as “systematic early dialog.” We propose the incorporation of systematic early dialog as the best practice guidance in global South and global North cooperation for health care and ICT innovation. The framework is a novel instrument to help overcome the current barriers in planetary health innovation management and consequently, bring breakthrough discoveries in ICTs and innovative ideas to the people.This work and data originate, in part, from the doctoral thesis of Sebastian Schee Genannt Halfmann, supervised by Angela Brand at
Maastricht University, and were, in part, published previously only as a PhD thesis (2019).The ERA-net ERAfrica project innXchange has received
funding from the European Union’s Seventh Framework
Programme for Research and Technological Development. This work was supported
by the Netherlands Organisation for Scientific Research (The
Netherlands), The Department of Science and Technology
(South Africa), The Ministry of Education, Science and
Technology (Kenya), and the German Federal Ministry for
Education and Research (Germany).http://www.liebertpub.com/overview/omics-a-journal-of-integrative-biology/43hj2022Informatic
Autoimmunity and lymphoproliferative diseases
Introduction: Several studies have linked certain autoimmune diseases to an increased
occurrence of lymphoma. Immunological and molecular characteristics in such patients
have not been extensively studied and the clinical significance of autoimmune
background is not clear. Patients and Methods: A group of 30 patients with
autoimmunity and lymphoma (group A) was studied for autoantibodies, histological
subtype, disease stage, immunophenotype of the blood with flow cytometry and
monoclonality of the blood (IgH or TCR rearrangement with PCR) and was compared to
30 patients with lymphoma of the same histological subtype, stage and gender without
autoimmune background (group B). Results: Of the 30 patients of group A [25 with B
non-Hodgkin lymphoma (B-NHL) and 5 with T non-Hodgkin lymphoma (T-NHL)], 17
were female and 13 male with a median age of 54 years (21-72). The more common
underlying autoimmune diseases were Sjögren syndrome (10/30), Psoriasis, (8/30) and
Rheumatoid Arthritis (5/30), followed by Cryoglobulinemia (2/30), Discoid lupus (2/30),
Sarcoidosis (1/30), Mixed Connective Tissue Disease (1/30) and Graves disease (1/30).
All patients were negative for Hepatitis B or C. Median time between diagnosis of the
autoimmune disorder and development of lymphoma was 7.7 years (1-18). Of the patients
with B-NHL17/25 (68%) developed marginal extranodal lymphoma, 6/25 (24%) Diffuse
Large B Cell Lymphoma, 1/25 lymphoma from the blastic centres and 1/25 Waldenström
macroglobulinemia. Sixteen patients were of early and 9 of advanced stage. Of the
patients with T-NHL, 4/5 developed primary cutaneous lymphoma and 1/5
angioimmunoblastic lymphadenopathy. Three were of early and 2 of advanced stage.
Immunophenotyping of the blood was performed in 20/30 patients. Abnormal phenotype
consistent with the disease was demonstrated in 1 patient with B- and in 2 patients with T-NHL. CD4+ were reduced in 13/20 patients whereas HLA-DR and/or CD38+, T-LGL
and NK were elevated in 7/20, 3/20 and 4/20 patients respectively. IgH rearrangement on
diagnosis was demonstrated in 5/11 B-NHL patients of early stage. Characteristics of
patients with autoimmunity and B-NHL (group I) and control patients (group II) are
shown in table 1. Conclusions: Sjögren syndrome results more frequently to development
of lymphoma. Lymphomas developing on autoimmune background are more commonly
B-NHL, extranodal from the marginal zone and of early stages. Coexistence of
autoimmunity and lymphoma is characterized by immunophenotypic T lymphocytes
disorders though not significantly different from those observed in patients with
lymphoma alone. Further studies are required to shed light on the nature of this
association
Global Open Health Data Cooperatives Cloud in an Era of COVID-19 and Planetary Health
Big data in both the public domain and the health care industry are growing rapidly, for example, with broad availability of next-generation sequencing and large-scale phenomics datasets on patient-reported outcomes. In parallel, we are witnessing new research approaches that demand sharing of data for the benefit of planetary society. Health data cooperatives (HDCs) is one such approach, where health data are owned and governed collectively by citizens who take part in the HDCs. Data stored in HDCs should remain readily available for translation to public health practice but at the same time, governed in a critically informed manner to ensure data integrity, veracity, and privacy, to name a few pressing concerns. As a solution, we suggest that data generated from high-throughput omics research and phenomics can be stored in an open cloud platform so that researchers around the globe can share health data and work collaboratively. We describe here the Global Open Health Data Cooperatives Cloud (GOHDCC) as a proposed cloud platform-based model for the sharing of health data between different HDCCs around the globe. GOHDCC's main objective is to share health data on a global scale for robust and responsible global science, research, and development. GOHDCC is a citizen-oriented model cooperatively governed by citizens. The model essentially represents a global sharing platform that could benefit all stakeholders along the health care value chain
Atherosclerosis progression in antiphospholipid syndrome is comparable to diabetes mellitus: a 3-year prospective study.
BACKGROUND: Antiphospholipid syndrome (APS) is an autoimmune thrombophilia leading to life-threatening cardiovascular events. Cross-sectional data support that APS is associated with accelerated atherosclerosis, but this has not been confirmed in prospective studies. We aimed to compare the rate of atherosclerosis progression over a 3-year period between patients with APS, diabetes mellitus (DM) and healthy controls (HC). METHODS: Eighty-six patients with APS (43 with primary [PAPS], 43 with systemic lupus erythematosus-related APS [SLE/APS]) and an equal number of age- and sex-matched patients with DM and HC, who underwent a baseline ultrasound of the carotid and femoral arteries, were invited for a 3-year follow-up evaluation for atherosclerotic plaque progression. Multivariate analysis was performed for the assessment of determinants of plaque progression after adjustment for disease-related and traditional cardiovascular risk factors. RESULTS: Seventy-four APS patients (74.3\% female, 38 with PAPS), 58 DM patients and 73 HC were included. APS patients exhibited a 3.3-fold higher risk of new atherosclerotic plaque formation compared with HC (p= 0.031), similar to that in DM (odds ratio [OR]=3.45, p= 0.028). In APS patients, plaque development risk was higher in SLE/APS vs PAPS (OR = 7.75, p= 0.038) and was independently associated with the presence of traditional cardiovascular risk factors, as expressed by the Systematic Coronary Risk Evaluation (SCORE) risk (OR = 2.31, p= 0.008). CONCLUSION: APS is characterized by accelerated rates of subclinical atherosclerosis to a degree comparable to DM, which is more pronounced in SLE/APS patients. Traditional cardiovascular risk factors are major determinants of this risk, warranting aggressive management as in other high cardiovascular-risk disorders