Governing researchers through public involvement

This paper focuses on recent developments in UK health research policy, which place new pressures on researchers to address issues of accountability and impact through the implementation of patient and public involvement (PPI). We draw on an in-depth interview study with 20 professional researchers, and we analyse their experiences of competing for research funding, focusing on PPI as a process of professional research governance. We unearth dominant professional narratives of scepticism and alternative identifications in their enactment of PPI policy. We argue that such narratives and identifications evidence a resistance to ways in which patient involvement has been institutionalised and to the resulting subject-positions researchers are summoned to take up. We show that the new subjectivities emerging in this landscape of research governance as increasingly disempowered, contradictory and fraught with unresolved tensions over the ethical dimensions of the researchers' own professional identities

Experience as Evidence: The Dialogic Construction of Health Professional Knowledge through Patient Involvement

This article investigates how healthcare professionals articulate the relationship between patient experience and ‘evidence’, creating hybrid forms of knowledge. We propose a Bakhtinian dialogical framework to theorise this process. Drawing on ethnographic work from patient involvement initiatives in England, we show how patient experiences are re-articulated by professionals who add their own intentions and accents in a dialogical process which incorporates diverse forms of knowledge and the conflicting demands of healthcare services. In this process, patient experiences become useful epistemic commodities, helping professionals to respond to workplace pressures by abstracting experiences from patients’ biographies, instrumentalising experiences and privileging ‘disembodied’ forms of involvement. Understanding knowledge as relational and hybrid helps move beyond the assumption that there is a clear dichotomy between ‘objective science’ and ‘subjective experience’. This article illuminates how new knowledge is produced when professionals engage with ‘lay’ patient knowledge, and helps inform the sociology of knowledge production more widely

Assessing public perception of a sand fly biting study on the pathway to a controlled 2 human infection model for cutaneous leishmaniasis

BACKGROUND: A controlled human infection model (CHIM) involves deliberate exposure of volunteers to pathogens to assess their response to new therapies at an early stage of development. We show here how we used public involvement to help shape the design of a CHIM to support future testing of candidate vaccines for the neglected tropical disease cutaneous leishmaniasis, a disease transmitted by the bite of infected sand flies in tropical regions. METHODS: We undertook a public involvement (PI) consultation exercise to inform development of a study to test the safety and effectiveness of a sand fly biting protocol using uninfected sand flies (FLYBITE: ClinicalTrials.gov ID NCT03999970 ) and a CHIM using Leishmania major-infected sand flies (LEISH_Challenge: ClinicalTrials.gov ID NCT04512742 ), both taking place in York, UK. We involved 10 members of the public including a patient research ambassador and a previous CHIM volunteer. The session took place at The University of York, UK and examined draft study volunteer-facing material and included the CHIM study design, potential adverse events and therapeutic interventions at study endpoints. A discussion of the scientific, ethical, humanitarian and economic basis for the project was presented to the participants to provoke discourse. An inductive, thematic analysis was used to identify the participants' key concerns. RESULTS: Themes were identified relating to i) quality of volunteer-facing written information, ii) improving study design, and iii) factors to motivate involvement in the research. Group participants responded positively to the overall study aims. Initial concerns were expressed about potential risks of study involvement, but further explanation of the science and mitigations of risk secured participant support. Participants provided advice and identified improved terminology to inform the volunteer-facing material. Lastly, treatment options were discussed, and excision of any cutaneous lesion was favoured over alternatives as a treatment. CONCLUSION: The consultation exercise provided invaluable information which led to improved study design and enhanced clarity in the volunteer-facing material. The session also reinforced the need to maintain public trust in scientific rigour prior to initiation of any study. The investigators hope that this description strengthens understanding of PI in clinical research, and encourages its use within other studies

Performing Values Practices and Grassroots Organizing: The Case of Solidarity Economy Initiatives in Greece

This article discusses solidarity economy initiatives as instances of grassroots organizing, and explores how ‘values practices’ are performed collectively during times of crisis. In focusing on how power, discourse and subjectivities are negotiated in the everyday practices of grassroots exchange networks (GENs) in crisis-stricken Greece, the study unveils and discusses three performances of values practices, namely mobilization of values, re-articulation of social relations, and sustainable living. Based on these findings, and informed by theoretical analyses of performativity, we propose a framework for studying the production and reproduction of values in the context of GENs, and the role of values in organizing alternatives

Factor XIII Val34Leu polymorphism and the risk of myocardial infarction under the age of 36 years

There are limited and controversial data regarding the impact of factor XIII (FXIII) Val34Leu polymorphism in the pathogenesis of premature myocardial infarction (MI). We examined whether FXIII Val34Leu polymorphism is associated with the development of early MI. We recruited 159 consecutive patients who had survived their first acute MI under the age of 36 years (mean age=32.1 ± 3.6 years, 138 were men). The control group consisted of 121 healthy individuals matched with cases for age and sex, without a family history of premature coronary heart disease (CHD). FXIII Val34Leu polymorphism was tested with polymerase chain reaction and reverse hybridization. There was a lower prevalence of carriers of the Leu34 allele in patients than in controls (30.2 vs. 47.1%, p=0.006). FXIII Val34Leu polymorphism was associated with lower risk for acute MI after adjusting for major cardiovascular risk factors (odds ratio [OR] = 0.51, 95% confidence interval [CI] 0.27-0.95, p=0.03). Subgroup analysis according to angiographic findings ("normal" coronary arteries [n=29] or significant CHD [n=130]) showed that only patients with MI and significant CHD had lower prevalence of carriers of the Leu34 allele compared to controls after adjusting for major cardiovascular risk factors (OR = 0.42, 95% CI 0.22-0.83, p=0.01). Our data indicate that FXIII Val34Leu polymorphism has a protective effect against the development of MI under the age of 36 years, particularly in the setting of significant CHD. © 2008 Schattauer GmbH

The immediate effect of aerobic exercise on haemostatic parameters in patients with recently diagnosed mild to moderate essential hypertension

Background: Exercise is frequently recommended for the treatment of patients with arterial hypertension. Previous studies have shown an enhanced coagulation state after exercise. Our study investigates the alterations observed after a single session of submaximal aerobic exercise concerning coagulation, fibrinolysis, platelet activation as well as endothelial function in patients with recently diagnosed essential hypertension. Methods: Twenty non-diabetic patients with recently diagnosed essential hypertension participated in a 45 min submaximal exercise test on a bicycle ergometer. Blood samples were drawn before and after exercise in order to determine parameters of coagulation activation (Prothrombin time [PT], activated Partial Thromboplastin time [aPTT], fibrinogen, D-Dimers, prothrombin fragments 1 + 2 [PF1+2], thrombin-antithrombin III complex [TAT] and factors VII, VIII and XII), platelet activation (Platelet count, Platelet factor 4 [PF4] and β-thromboglobulin [β-TG]), fibrinolysis activation (Plasmin-a2 antiplasmin complex, PAP) and endothelial function (soluble Thrombomodulin [sTM] and von Willebrand factor [vWf]). Soluble P-selectin served as a marker for endothelial and platelet activation. Results: All patients completed the exercise test. aPTT (P < 0.001) and factor VII (P = 0.01) significantly decreased while PT (P = 0.04), fibrinogen (P = 0.008), factor VIII (P < 0.001), platelet count (P = 0.002) and β-TG levels (P = 0.01) significantly increased as a result of exercise. Compared to baseline there was an 11% increase in TAT (P = 0.04) and a 28% increase in PAP (P < 0.001) at peak exercise. One hour post exercise, there was a 43% increase in PAP whereas TAT levels became similar to those at baseline. Additionally vWf (P = 0.01) and sP-selectin (P = 0.02) levels significantly increased throughout the exercise protocol. Conclusions: Patients with recently diagnosed and never treated mild to moderate essential hypertension undergoing submaximal aerobic exercise present evidence of enhanced fibrinolysis compared with a mild increase of coagulation indices. However, whether there is a favourable effect of exercise on fibrinolysis over coagulation and/or endothelial involvement during exercise needs to be further investigated. © Springer Science+Business Media, LLC 2007