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1.
Res Involv Engagem ; 10(1): 22, 2024 Feb 09.
Artigo em Inglês | MEDLINE | ID: mdl-38336774

RESUMO

Involvement of individuals with lived experience, also called "patient partners", is a key element within implementation science, the study of how to put evidence into practice. While conducting a 4-year implementation study focused on improving physician management of opioid prescribing, our research team worked closely with Lived Experience Advisors (LEAs). LEAs were involved throughout the study, including developing patient-facing recruitment material, informing the analysis of results, and as a regular reminder of the real-world impact of this work. However, through regular critical reflection, we acknowledged that we were still uncertain how to articulate the impact of LEA involvement. As a team, we continually discussed why and how people with lived experience were involved in this study. We probed ill-defined concepts such as "patient perspective", which was particularly complex for a study focused on changing physician behaviour with indirect impact on patients. This critical reflection strengthened trust and rapport between team members (characteristics deemed essential to meaningful patient involvement), while underscoring the value of including concerted time to explore the muddier aspects of engagement. In short, patient engagement did not proceed as smoothly as planned. We advocate that "best practices" in the engagement of people with lived experience include regularly setting aside time outside of practical study tasks to interrogate complex aspects of patient engagement, including reflecting on how and why individuals with lived experience are involved.


Involvement of individuals with lived experience, also called "patient partners", is often a required element of applied research. Although there is a lot of guidance on how to engage individuals with lived experience, there is no single best-practice that always applies. Each team is different and must adapt to meet the needs of their study and team. While conducting a 4-year study focused on improving physician management of opioid prescribing, our research team worked closely with Lived Experience Advisors (LEAs). The LEAs were involved in developing patient-facing recruitment material, informing the analysis of results, and were a regular reminder of the real-world impact of this work. As a team, we continually discussed why and how individuals with lived experience were involved in this study and probed concepts such as "patient perspective", which is complex in a study focused on changing physician behaviour. Setting aside time to not just work on a task but to critically reflect and ask questions led to new insights into why and how we do this work. For example, one of the patient handouts that was co-designed with patients and praised by some physicians we interviewed, was found by LEAs to be objectifying and lacking nuance, which further highlighted how the same material can be received in different ways. Our discussions also helped build trust and rapport, which are characteristics deemed essential to meaningful patient involvement. We advocate for study teams to dedicate time to interrogate the less straightforward aspects of patient engagement. In other words - "embrace the messiness".

2.
Front Public Health ; 10: 811974, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35669746

RESUMO

Introduction: In Sweden, often seen as one of the most egalitarian countries, the COVID-19 pandemic exposed high levels of health inequality, especially harming people with a refugee background. This is also despite Sweden's image as a refugee-friendly country. In this context, the aim of this paper is to better understand how Swedish health- and social workers have reacted to the health- and social needs of refugees during the pandemic. The Swedish case is particularly interesting because, as seen in the paper, health- and social workers had the task of communicating health guidance to refugees who were sometimes more reliant on information from abroad where the consensus on COVID-19 restrictions ran contrary to the approach recommended by the Swedish public health authority. Method: The study utilizes a qualitative content analysis of 13 in-depth interviews with health- and social workers in Sweden, active in the care of refugees within different kinds of health- and social care settings. Results: The analysis showed that healthcare services have remained open during the pandemic but with new precautions at reception areas impacting how refugees access healthcare. As discussed in the article, the shift to digital tools has particularly impacted refugees, worsening already existing barriers to healthcare services faced by those with refugee status. Public health recommendations were poorly designed to the needs of refugees whose living conditions often prevented them from self-isolation and social distancing. Furthermore, Sweden's initially non-restrictive approach to the pandemic instructed health- and social-workers to encourage refugees to take far fewer precautions (e.g., self-isolation, home-schooling, pregnant women to avoid virus hotspots) compared both with European neighbors and the international media typically used by refugees. When Sweden shifted toward a more restrictive approach, health- and social-workers had to revise their guidance in relation to the new recommendations around precautions. Conclusion: Refugees have faced increased barriers to maintaining their health and wellbeing during the pandemic that exceed those experienced by the rest of the Swedish population. Refugees have, in general, taken precautions in regard to social distancing and followed recommendations but faced challenges with social distancing due to isolation and crowded living. Public health authorities have often failed to acknowledge that individuals use increasingly diverse sources of knowledge when trying to protect their health, and that not everyone has access to the knowledge needed to access healthcare and social systems. At the same time, there is a need to acknowledge that refugees are sometimes a source of expertise that was ignored by the Swedish health and social system during the pandemic. There is a need for urgent efforts to halt the worsening health conditions for this specific group, but also to counter knock-on societal effects and rising health inequity.


Assuntos
COVID-19 , Refugiados , COVID-19/epidemiologia , Feminino , Disparidades nos Níveis de Saúde , Humanos , Pandemias , Gravidez , Apoio Social , Assistentes Sociais , Suécia/epidemiologia
3.
JMIR Res Protoc ; 9(11): e17324, 2020 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-33252352

RESUMO

BACKGROUND: The project "Precision Health and Everyday Democracy" (PHED) is a transdisciplinary partnership that combines a diverse range of perspectives necessary for understanding the increasingly complex societal role played by modern health care and medical research. The term "precision health" is being increasingly used to express the need for greater awareness of environmental and genomic characteristics that may lead to divergent health outcomes between different groups within a population. Enhancing awareness of diversity has parallels with calls for "health democracy" and greater patient-public participation within health care and medical research. Approaching health care in this way goes beyond a narrow focus on the societal determinants of health, since it requires considering health as a deliberative space, which occurs often at the banal or everyday level. As an initial empirical focus, PHED is directed toward the health needs of marginalized migrants (including refugees and asylum seekers, as well as migrants with temporary residency, often involving a legally or economically precarious situation) as vulnerable groups that are often overlooked by health care. Developing new transdisciplinary knowledge on these groups provides the potential to enhance their wellbeing and benefit the wider society through challenging the exclusions of these groups that create pockets of extreme ill-health, which, as we see with COVID-19, should be better understood as "acts of self-harm" for the wider negative impact on humanity. OBJECTIVE: We aim to establish and identify precision health strategies, as well as promote equal access to quality health care, drawing upon knowledge gained from studying the health care of marginalized migrants. METHODS: The project is based in Sweden at Malmö and Lund Universities. At the outset, the network activities do not require ethical approval where they will not involve data collection, since the purpose of PHED is to strengthen international research contacts, establish new research within precision strategies, and construct educational research activities for junior colleagues within academia. However, whenever new research is funded and started, ethical approval for that specific data collection will be sought. RESULTS: The PHED project has been funded from January 1, 2019. Results of the transdisciplinary collaboration will be disseminated via a series of international conferences, workshops, and web-based materials. To ensure the network project advances toward applied research, a major goal of dissemination is to produce tools for applied research, including information to enhance health accessibility for vulnerable communities, such as marginalized migrant populations in Sweden. CONCLUSIONS: There is a need to identify tools to enable the prevention and treatment of a wide spectrum of health-related outcomes and their link to social as well as environmental issues. There is also a need to identify and investigate barriers to precision health based on democratic principles. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/17324.

4.
Nat Commun ; 11(1): 205, 2020 01 10.
Artigo em Inglês | MEDLINE | ID: mdl-31924764

RESUMO

The fossil record of the terminal Ediacaran Period is typified by the iconic index fossil Cloudina and its relatives. These tube-dwellers are presumed to be primitive metazoans, but resolving their phylogenetic identity has remained a point of contention. The root of the problem is a lack of diagnostic features; that is, phylogenetic interpretations have largely centered on the only available source of information-their external tubes. Here, using tomographic analyses of fossils from the Wood Canyon Formation (Nevada, USA), we report evidence of recognizable soft tissues within their external tubes. Although alternative interpretations are plausible, these internal cylindrical structures may be most appropriately interpreted as digestive tracts, which would be, to date, the earliest-known occurrence of such features in the fossil record. If this interpretation is correct, their nature as one-way through-guts not only provides evidence for establishing these fossils as definitive bilaterians but also has implications for the long-debated phylogenetic position of the broader cloudinomorphs.


Assuntos
Abdome/anatomia & histologia , Anelídeos/anatomia & histologia , Cnidários/anatomia & histologia , Fósseis , Animais , Anelídeos/classificação , Evolução Biológica , Cnidários/classificação , Sedimentos Geológicos , Nevada , Filogenia
5.
Cardiovasc J Afr ; 26(2 Suppl 1): S15-7, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25962942

RESUMO

In March 2014, GSK announced a number of new strategic investments in Africa. One of these included investment of up to 25 million Pounds Sterling (£25 million) to create the world's first R&D Open Lab to increase understanding of non-communicable diseases (NCDs) in Africa. The vision is to create a new global R&D effort with GSK working in partnership with major funders, academic centres and governments to share expertise and resources to conduct high-quality research. The Africa NCD Open Lab will see GSK scientists collaborate with scientific research centres across Africa. An independent advisory board of leading scientists and clinicians will provide input to develop the strategy and selection of NCD research projects within a dynamic and networked open-innovation environment. It is hoped that these research projects will inform prevention and treatment strategies in the future and will enable researchers across academia and industry to discover and develop new medicines to address the specific needs of African patients.


Assuntos
Cooperação Internacional , Laboratórios/economia , África , Doença Crônica/terapia , Doenças Transmissíveis/terapia , Comportamento Cooperativo , Humanos , Investimentos em Saúde
6.
J Am Coll Surg ; 212(1): 42-9, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-21184956

RESUMO

BACKGROUND: Previously we demonstrated the safety and patency of a magnetic compression anastomosis (magnamosis). We present the further development of this technique, with specific focus on optimizing device design for minimally invasive magnamosis. STUDY DESIGN: The magnamosis device was designed to incorporate 3 features: 2 convex-concave radially symmetric halves that magnetically self-align, a central channel for immediate patency, and specially engineered radial topography of the mating surfaces to promote gradual remodeling. Each symmetrical half consists of a ring-shaped neodymium-iron-boron magnet encased in polycarbonate casing. Twenty-one young adult pigs underwent either magnetic gastrojejunostomy (n = 13) or jejunojejunostomy (n = 8). Animals were euthanized at 1, 2, 4, and 6 weeks after operation. Anastomoses were studied with contrast radiography, burst pressure, and histology. RESULTS: Gastrojejunostomy: In all animals with successful placement of magnets, anastomoses were patent by contrast fluoroscopy, well healed by histologic examination, and showed excellent burst strength. Jejunojejunostomy: All animals had uneventful clinical courses, indicating that the magnamosis with immediate patency functioned properly without device dislodgement. At sacrifice, all magnamoses were patent, well healed by histology, and had burst strengths that equaled or exceeded that of traditional stapled anastomoses. CONCLUSIONS: Minimally invasive placement of a custom magnetic device in the stomach and jejunum allows intraluminal self-alignment and subsequent compression anastomosis over 3 to 10 days. The magnamosis is immediately patent and develops strength equal to or greater than that of hand-sewn or stapled anastomoses. Magnamosis is effective in the pig model, and may be a safe, effective, and minimally invasive alternative to current anastomotic strategies in humans.


Assuntos
Anastomose Cirúrgica/instrumentação , Derivação Gástrica/métodos , Jejunostomia/métodos , Magnetoterapia/instrumentação , Anastomose Cirúrgica/métodos , Animais , Desenho de Equipamento , Derivação Gástrica/instrumentação , Jejunostomia/instrumentação , Laparoscopia , Magnetoterapia/métodos , Sus scrofa
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