Lost in the shadows: reflections on the dark side of co-production.

This article is a response to Oliver et al.'s Commentary 'The dark side of coproduction: do the costs outweigh the benefits for health research?' recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlighting various professional costs to those involved. However, we identify four related limitations in their inquiry, as follows: (1) the adoption of a problematically expansive definition of co-production that fails to acknowledge key features that distinguish co-production from broader collaboration; (2) a strong focus on technocratic rationales for co-producing research and a relative neglect of democratic rationales; (3) the transposition of legitimate concerns relating to collaboration between researchers and practitioners onto work with patients, service users and marginalised citizens; and (4) the presentation of bad practice as an inherent flaw, or indeed 'dark side', of co-production without attending to the corrupting influence of contextual factors within academic research that facilitate and even promote such malpractice. The Commentary's limitations can be seen to reflect the contemporary use of the term 'co-production' more broadly. We describe this phenomenon as 'cobiquity' - an apparent appetite for participatory research practice and increased emphasis on partnership working, in combination with the related emergence of a plethora of 'co' words, promoting a conflation of meanings and practices from different collaborative traditions. This phenomenon commonly leads to a misappropriation of the term 'co-production'. Our main motivation is to address this imprecision and the detrimental impact it has on efforts to enable co-production with marginalised and disadvantaged groups. We conclude that Oliver et al. stray too close to 'the problem' of 'co-production' seeing only the dark side rather than what is casting the shadows. We warn against such a restricted view and argue for greater scrutiny of the structural factors that largely explain academia's failure to accommodate and promote the egalitarian and utilitarian potential of co-produced research.

How helpful are Patient and Public Involvement strategic documents - Results of a framework analysis using 4Pi National Involvement Standards.

BACKGROUND: Patient and Public Involvement (PPI) strategic documents are viewed as an essential feature of organisational commitment to openness and transparency. They provide a mechanism to communicate opportunities for wider community influence in healthcare. The absence of documentation can be negatively interpreted, for example during regulatory inspection, as a lack of intent by organisations to collaborate with a broad constituency. Published literature paints a confusing picture of rationale and evidence that could provide the foundation for strategic action. This makes it difficult for those responsible for turning goals into meaningful involvement. We investigated how content is presented and organised in strategic documents. This pragmatic study is intended to stimulate reflective practice, promote debate and generate further inquiry with a wide audience. METHODS: We created and iterated a framework adapted from 4Pi National Involvement Standards to analyse organisational PPI strategic documents against five domains which are principles, purpose, presence, process and impact. Fifteen strategic documents were grouped into four categories (acute care providers; clinical commissioning groups; community healthcare providers; and other) and included for analysis. A matrix was produced. By reading the matrix vertically (down) and horizontally (across), comparisons can be made between 4Pi domains and across organisations. RESULTS: There was no discernible pattern between domains or between organisations. There was variation in the level to which criteria were met. No single strategy fully met the criteria for all five domains of 4Pi National Involvement Standards. The criteria for purpose was fully met in eight strategic documents. Only two documents fully met impact criteria. Four organisations showed better completeness with fully or partially met criteria across five domains. A single organisation partially met the criteria for all domains. The remaining 10 were unable to meet the criteria in at least one domain. CONCLUSION: Our findings align with published literature that suggests the underpinning rationale for PPI is confusing. A strategic aim is difficult to articulate. Context and complexity are at play making the sharing of generalisable knowledge elusive. We offer further critique about the value of these documents and consider: 'is there an alternative approach to construct PPI strategy to generate theory, capture learning and evaluate effectiveness at the same time?' We suggest testing the adoption of programme theory in PPI. The emergent nature and context sensitive features of programme theory enable curiosity, creativity and critical appraisal. It has the potential to release practitioners from the tokenistic cycle of monitoring and reporting and replace this with a richer understanding of 'what' works and 'how' tied to a 'why' - in order to achieve a shared aim that everyone can get behind.

Using virtual worlds for patient and public engagement.

Patient and public involvement is fundamental in healthcare and many methods attempt to facilitate this engagement. The present study investigated use of computer-generated environments known as 'virtual worlds' (VW) as an involvement method. The VW used in the present research was Second Life, which is 3-dimensional, publically accessible and internet-based. It is accessed using digital self-representations, or 'avatars', through which users navigate the virtual environment and communicate with one another. Participants were patients with long-term conditions, frequently involved in shaping health research and care. Some had mobility and communication difficulties, potentially making involvement through traditional face-to-face modes of engagement challenging. There were 2 stages to this study. Stage-1: Participants were introduced to VWs and Second Life. This was followed by a face-to-face focus group discussion (FGD) in order to gain their views on use of SL. Stage-2: An FGD attended by 8 people (4 patients, 3 researchers, 1 healthcare professional) was conducted in Second Life. Training and support on using Second Life had been provided for participants. The FGD took place successfully, although some technical and communication difficulties were experienced. Data was collected in the form of interviews and questionnaires from the patients about their experience of using the virtual world. Participants recognised the potential of VWs as a platform for patient engagement, especially for those who suffer from chronic conditions that impact severely upon their mobility and communication. Participant feedback indicated that potential barriers include technical problems with VW programs and potential user inexperience of using VWs, which may be counteracted by ensuring provision of continuous training and support. In conclusion, this study established the feasibility of using VWs for patient FGDs and indicates a potential of use of VWs for engagement in future, particularly for peer-led support and to engage people with particular long-term conditions.