Aging and Health Care: Social Science and Policy Perspectives.

1991 ◽  
Vol 20 (3) ◽  
pp. 468
Author(s):  
Cora A. Martin ◽  
Marcia G. Ory ◽  
Kathleen Bond
Keyword(s):  
Health Care ◽  
Social Science ◽  
Science And Policy ◽  
Aging And Health

scholarly journals OP0277-PARE METABERN, THE EUROPEAN REFERENCE NETWORK FOR RARE HEREDITARY DISEASES: STRUCTURE, OBJECTIVES, METABOLIC RMDS AND THE ROLES OF EUROPEAN PATIENT ADVOCACY GROUPS (EPAGS)

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 168.2-168
Author(s):  
L. Wagner ◽  
S. Sestini ◽  
C. Brown ◽  
A. Finglas ◽  
R. Francisco ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Social Science ◽  
Metabolic Pathways ◽  
Metabolic Disorders ◽  
Clinical Care ◽  
Single Point ◽  
Link Type ◽  
The Impact

Background:Inborn metabolic disorders (IMDs) currently encompass more than 1,500 diseases with new ones still to be identified1. Each of them is characterised by a genetic defect affecting a metabolic pathway. Only few of them have curative treatments, that target the respective metabolic pathway. Commonly, treatment examples include diet, substrate reduction therapies, enzyme replacement therapies, gene therapy and biologicals, enabling IMD-patient now to survive to adulthood. About 30 % of all IMDs involve the musculoskeletal system and are here referred to as rare metabolic RMDs. Generally, IMDs are very heterogenous with respect to symptoms and severity, often being systemic and affecting more children than adults. Thus, challenges include certified advanced training of adult metabolic experts, standardised transition plans, social support and development of therapies for diseases that do not have any cure yet.Objectives:Introduction of MetabERN, its structure and objectives, highlighting on the unique features and challenges of metabolic RMDs and describing the involvement of patient representation in MetabERN.Methods:MetabERN is stratified in 7 subnetworks (SNW) according to the respective metabolic pathways and 9 work packages (WP), including administration, dissemination, guidelines, virtual counselling framework, research/clinical trials, continuity of care, education and patient involvement. The patient board involves a steering committee and single point of contacts for each subnetwork and work package, respectively2. Projects include identifying the need of implementing social science to assess the psycho-socio-economic burden of IMDs, webinars on IMDs and their transition as well as surveys on the impact of COVID-193 on IMD-patients and health care providers (HCPs), social assistance for IMD-patients and analysing the transition landscape within Europe.Results:The MetabERN structure enables bundling of expertise, capacity building and knowledge transfer for faster diagnosis and better health care. Rare metabolic RMDs are present in all SNWs that require unique treatments according to their metabolic pathways. Implementation of social science to assess the psycho-socio-economic burden of IMDs is still underused. Involvement of patient representatives is essential for a holistic healthcare not only focusing on clinical care, but also on the quality of life for IMD-patients. Surveys identified unmet needs of patient care, patients having little information on national support systems and structural deficits of healthcare systems to ensure HCP can provide adequate clinical care during transition phases. These results are collected by MetabERN and forwarded to the Directorate-General for Health and Food Safety (DG SANTE) of the European Commission (EC) to be addressed further.Conclusion:MetabERN offers an infrastructure of virtual healthcare for patients with IMDs. Thus, in collaboration with ERN ReCONNET, MetabERN can assist in identifying rare metabolic disorders of RMDs to shorten the odyssey of diagnosis and advise on their respective therapies. On the other hand, MetabERN can benefit from EULAR’s longstanding experience regarding issues affecting the quality of life, all RMD patients are facing, such as pain, stiffness, fatigue, rehabilitation, maintaining work and disability claims.References:[1]IEMbase - Inborn Errors of Metabolism Knowledgebase http://www.iembase.org/ (accessed Jan 29, 2021).[2]MetabERN: European Refence Network for Hereditary Metabolic Disorders https://metab.ern-net.eu/ (accessed Jan 29, 2021).[3]Lampe, C.; Dionisi-Vici, C.; Bellettato, C. M.; Paneghetti, L.; van Lingen, C.; Bond, S.; Brown, C.; Finglas, A.; Francisco, R.; Sestini, S.; Heard, J. M.; Scarpa, M.; MetabERN collaboration group. The Impact of COVID-19 on Rare Metabolic Patients and Healthcare Providers: Results from Two MetabERN Surveys. Orphanet J. Rare Dis.2020, 15 (1), 341. https://doi.org/10.1186/s13023-020-01619-x.Acknowledgements:The authors thank the MetabERN collaboration group, the single point of contacts (SPOC) of the MetabERN patient board and the Transition Project Working Group (TPWG)Disclosure of Interests:None declared

scholarly journals Non-Equilibrium Social Science and Policy

2017 ◽  
pp. 1-17 ◽  
Author(s):  
Jeffrey Johnson ◽  
Paul Ormerod ◽  
Bridget Rosewell ◽  
Andrzej Nowak ◽  
Yi-Cheng Zhang
Keyword(s):  
Social Science ◽  
Science And Policy ◽  
Non Equilibrium

Multiple-Study Replication Initiatives

2021 ◽  
pp. 152-172
Author(s):  
R. Barker Bausell
Keyword(s):  
Health Care ◽  
Social Science ◽  
Science Studies ◽  
Open Science ◽  
Questionable Research Practices ◽  
Science Collaboration ◽  
Scientific Results ◽  
Commercial Applications ◽  
Successful Replication ◽  
Psychological Experiments

The “mass” replications of multiple studies, some employing dozens of investigators distributed among myriad sites, is unique to the reproducibility movement. The most impressive of these initiatives was employed by the Open Science Collaboration directed by Brian Nosek, who recruited 270 investigators to participate in the replication of 100 psychological experiments via a very carefully structured, prespecified protocol that avoided questionable research practices. Just before this Herculean effort, two huge biotech firms (Amegen and Bayer Health Care) respectively conducted 53 and 67 preclinical replications of promising published studies to ascertain which results were worth pursuing for commercial applications. Amazingly, in less than a 10-year period, a number of other diverse multistudy replications were also conducted involving hundreds of effects. Among these were the three “many lab” multistudy replications based on the Open Science Model (but also designed to ascertain if potential confounders of the approach itself existed, such as differences in participant types, settings, and timing), replications of social science studies published in Science and Nature, experimental economics studies, and even self-reported replications ascertained from a survey. Somewhat surprisingly, the overall successful replication percentage for this diverse collection of 811 studies was 46%, mirroring the modeling results discussed in Chapter 3 and supportive of John Ioannidis’s pejorative and often quoted conclusion that most scientific results are incorrect.

scholarly journals Innovation, aging, and health care: Unraveling “silver” from “red” herrings?

2020 ◽  
Vol 29 (S1) ◽  
pp. 3-7
Author(s):  
Joan Costa‐Font ◽  
Rosella Levaggi
Keyword(s):  
Health Care ◽  
Aging And Health

scholarly journals Working together to co-produce better health: The experience of the Collaboration for Leadership in Applied Health Research and Care for Northwest London

2020 ◽  
Vol 26 (1) ◽  
pp. 28-36
Author(s):  
Cicely A Marston ◽  
Rachel Matthews ◽  
Alicia Renedo ◽  
Julie E Reed
Keyword(s):  
Health Care ◽  
Social Science ◽  
Health Research ◽  
Research Collaboration ◽  
Social Science Research ◽  
Science Research ◽  
Good Evidence ◽  
Care Practice ◽  
New Ways Of Working ◽  
Applied Health Research

Objectives To improve the provision of health care, academics can be asked to collaborate with clinicians, and clinicians with patients. Generating good evidence on health care practice depends on these collaborations working well. Yet such relationships are not the norm. We examine how social science research and health care improvement practice were linked through a programme designed to broker collaborations between clinicians, academics, and patients to improve health care – the UK National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for Northwest London. We discuss the successes and challenges of the collaboration and make suggestions on how to develop synergistic relationships that facilitate co-production of social science knowledge and its translation into practice. Methods A qualitative approach was used, including ethnographic elements and critical, reflexive dialogue between members of the two collaborating teams. Results Key challenges and remedies were connected with the risks associated with new ways of working. These risks included differing ideas between collaborators about the purpose, value, and expectations of research, and institutional opposition. Dialogue between collaborators did not mean absence of tensions or clashes. Risk-taking was unpopular – institutions, funders, and partners did not always support it, despite simultaneously demanding ‘innovation’ in producing research that influenced practice. Conclusions Our path was made smoother because we had funding to support the creation of a ‘potential space’ to experiment with different ways of working. Other factors that can enhance collaboration include a shared commitment to dialogical practice, a recognition of the legitimacy of different partners’ knowledge, a long timeframe to identify and resolve problems, the maintenance of an enabling environment for collaboration, a willingness to work iteratively and reflexively, and a shared end goal.

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