Critical perspectives on ‘consumer involvement’ in health research: epistemological dissonance and the know-do gap

Researchers in the area of health and social care (both in Australia and internationally) are encouraged to involve consumers throughout the research process, often on ethical, political and methodological grounds, or simply as ‘good practice’. This paper presents findings from a qualitative study in the UK of researchers’ experiences and views of consumer involvement in health research. Two main themes are presented in the paper. Firstly, we explore the ‘know-do gap’ which relates to the tensions between researchers’ perceptions of the potential benefits of, and their actual practices in relation to, consumer involvement. Secondly, we focus on one of the reasons for this ‘know-do gap’, namely epistemological dissonance. Findings are linked to issues around consumerism in research, lay/professional knowledges, the (re)production of professional and consumer identities and the maintenance of boundaries between consumers and researchers

Can the impact of public involvement on research be evaluated? : a mixed methods study.

Background: Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement. Objective: To investigate whether it is feasible to evaluate the impact of public involvement on health and social research. Methods: Mixed methods including a two-round Delphi study with pre-specified 80% consensus criterion, with follow-up interviews. UK and international panellists came from different settings, including universities, health and social care institutions and charitable organizations. They comprised researchers, members of the public, research managers, commissioners and policy makers, self-selected as having knowledge and/or experience of public involvement in health and/or social research; 124 completed both rounds of the Delphi process. A purposive sample of 14 panellists was interviewed. Results: Consensus was reached that it is feasible to evaluate the impact of public involvement on 5 of 16 impact issues: identifying and prioritizing research topics, disseminating research findings and on key stakeholders. Qualitative analysis revealed the complexities of evaluating a process that is subjective and socially constructed. While many panellists believed that it is morally right to involve the public in research, they also considered that it is appropriate to evaluate the impact of public involvement. Conclusions: This study found consensus among panellists that it is feasible to evaluate the impact of public involvement on some research processes, outcomes and on key stakeholders. The value of public involvement and the importance of evaluating its impact were endorsed.</p

The effect of riboflavin/UVA collagen cross-linking therapy on the structure and hydrodynamic behaviour of the ungulate and rabbit corneal stroma.

To examine the effect of riboflavin/UVA corneal crosslinking on stromal ultrastructure and hydrodynamic behaviour.One hundred and seventeen enucleated ungulate eyes (112 pig and 5 sheep) and 3 pairs of rabbit eyes, with corneal epithelium removed, were divided into four treatment groups: Group 1 (28 pig, 2 sheep and 3 rabbits) were untreated; Group 2 (24 pig) were exposed to UVA light (3.04 mW/cm(2)) for 30 minutes and Group 3 (29 pig) and Group 4 (31 pig, 3 sheep and 3 rabbits) had riboflavin eye drops applied to the corneal surface every 5 minutes for 35 minutes. Five minutes after the initial riboflavin instillation, the corneas in Group 4 experienced a 30 minute exposure to UVA light (3.04 mW/cm(2)). X-ray scattering was used to obtain measurements of collagen interfibrillar spacing, spatial order, fibril diameter, D-periodicity and intermolecular spacing throughout the whole tissue thickness and as a function of tissue depth in the treated and untreated corneas. The effect of each treatment on the hydrodynamic behaviour of the cornea (its ability to swell in saline solution) and its resistance to enzymatic digestion were assessed using in vitro laboratory techniques.Corneal thickness decreased significantly following riboflavin application (p<0.01) and also to a lesser extent after UVA exposure (p<0.05). With the exception of the spatial order factor, which was higher in Group 4 than Group 1 (p<0.01), all other measured collagen parameters were unaltered by cross-linking, even within the most anterior 300 microns of the cornea. The cross-linking treatment had no effect on the hydrodynamic behaviour of the cornea but did cause a significant increase in its resistance to enzymatic digestion.It seems likely that cross-links formed during riboflavin/UVA therapy occur predominantly at the collagen fibril surface and in the protein network surrounding the collagen

Schematic showing likely collagen shrinkage during electron microscopy processing of cross-linked and non-cross-linked corneas.

<p>(i) The theoretical structure of a coated collagen fibril (F) in the corneal stroma (as proposed by Fratzl and Daxer <a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0052860#pone.0052860-Fratzl1" target="_blank">[48]</a>). The coating (outer limit shown as a broken line), consists mainly of proteoglycans (P) which are attached to the fibril and form a porous network with fractal dimension. We propose that riboflavin/UVA induced cross-links are formed within the coating of the collagen fibril between proteoglycan core proteins and/or on the surface of the fibril within and between collagen molecules (M) (ii) and prevent the usual shrinkage associated with tissue dehydration during electron microscopy processing (iii and iv). Hence, when viewed by electron microscopy, collagen fibrils in riboflavin/UVA treated corneas (iv) may misleadingly appear larger in diameter than those in untreated corneas (iii).</p

Stromal thickness in pig corneas before and after treatment.

<p>Controlled air drying of the most hydrated corneas ensured that all corneas were of a similar thickness at the start of the swelling study.</p

Schematic showing possible cross-linking scenarios.

<p>A simplified model showing three collagen fibrils, each with a coating (outer limit shown as a broken line) consisting mainly of proteoglycans which are attached to the fibril and form a porous network with fractal dimension (based on Fratzl and Daxer's theoretical model of collagen fibrils in the corneal stroma <a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0052860#pone.0052860-Fratzl1" target="_blank">[48]</a>). Coloured lines indicate the possible location(s) of riboflavin/UVA induced cross-links that are discussed in the text.</p

Cross-section of cross-linked and non-cross-linked pig corneas.

<p>Small-angle x-ray scattering images were obtained at 25 µm intervals (red circles) throughout the anterior 300 µm of riboflavin/UVA treated and untreated strips of pig cornea using a microfocus x-ray beam. Each graduation on the scale bar represents 150 µm.</p

Maximum achievable hydration of treated and untreated pig corneas.

<p>Maximum achievable hydration of treated and untreated pig corneas.</p

Collagen parameters in cross-linked and non-cross-linked pig corneas.

<p>Average measurements of interfibrillar spacing (A) and fibril diameter (B) at 25 µm intervals throughout the anterior 300 µm of treated and untreated pig corneas. Significant differences between treatment groups are highlighted by asterices (p<0.05).</p

Depth profile of collagen intermolecular spacing in treated and untreated sheep corneas.

<p>Depth profile of collagen intermolecular spacing in treated and untreated sheep corneas.</p