“Co-production” is becoming an increasingly popular term in policymaking, governance, and research. While the shift from engagement and involvement to co-production in health care holds the promise of revolutionising health services and research, it is not always evident what counts as co-production: what is being produced, under what circumstances, and with what implications for participants. We discuss these questions and propose that co-production can be understood as an exploratory space and a generative process that leads to different, and sometimes unexpected, forms of knowledge, values, and social relations. By opening up this discussion, we hope to stimulate future debates on co-production as well as draw out ways of thinking differently about collaboration and participation in health care and research.Part of the title of this article is inspired by the book “The Social Construction of What?” by Ian Hacking (Cambridge, MA: Harvard University Press; 2000).

Background: Research imperatives around COVID-19 require an embrace of its complexity by the inclusion of multi-dimensional perspectives such as lived experiences of persons diagnosed with the disease. This study documents the symptom trends and timelines of COVID-19 as self-reported by individuals in addition to the psychosocial sequelae associated with a positive COVID-19 diagnosis. Methods: This study followed an explorative qualitative design and included curated online dairies and interviews of individuals diagnosed with COVID-19. Judgemental convenient sampling was used to access 28 self-reports via digital media between 05 March and 05 April 2020. Demographic details were extracted where possible and included a diversity of cases. Data were analysed thematically using inductive reasoning. Results: Reports revealed a plethora of symptoms associated with the pulmonary system like shortness of breath and cough while another group of symptoms shows extra-pulmonary affectations. The lived experience of these individuals as analysed from their self-reports generated ve emergent themes followed after analysis which included (i) the variability of the severity and presentation of the disease, (ii) the 3F (fright, ght or ight) response, (iii) moral obligation and personal agency, (iv) voicing vulnerabilities and harnessing hope, (v) silencing stigma. Conclusions: COVID-19 presents with biopsychosocial affectation on the person. A multidimensional approach is required from all concerned to mitigate its effects. Background Outbreaks of coronavirus infections are not new to the world. The SARS-CoV-2 is the third serious Coronavirus outbreak in less than 20 years, following Severe Acute Respiratory Syndrome (SARS) in 2002-2003 and Middle Eastern Respiratory Syndrome (MERS) in 2012. Researchers have compiled signs and symptoms of the COVID-19. Huang et al (1) reported that patients (n=41) suffered from fever, malaise, dry cough, and dyspnea. Chest computerized tomography (CT) scans showed pneumonia with abnormal ndings in all cases. About a third of those (13, 32%) required Intensive Care Unit (ICU) admission, and there were six (15%) fatal cases. In another publication by Chen et al (2) it was reported that this disease is estimated to have a mean incubation period of 5.2 days and commonly causes fever, cough, myalgia, and pneumonia in patients. Digestive symptoms such as diarrhoea, may be a presenting feature of COVID-19 (3). Presently it appears that the descriptions of the COVID-19 symptoms are nebulous as without a positive real-time Reverse Transcription Polymerase Chain Reaction (RT-PCR) results there is no unique symptom that can be used for screening patients with COVID-19. An exploration into the trend and timeline of the symptoms reported by patients (4) with a positive SARS-CoV-2 diagnosis may be useful in accurately delineating COVID-19 speci c symptoms as reported by patients affected by this disease.

Citizens across the world are increasingly called upon to participate in healthcare improvement. It is often unclear how this can be made to work in practice. This 4-year ethnography of a UK healthcare improvement initiative showed that patients used elements of organizational culture as resources to help them collaborate with healthcare professionals. The four elements were: (1) organizational emphasis on nonhierarchical, multidisciplinary collaboration; (2) organizational staff ability to model desired behaviours of recognition and respect; (3) commitment to rapid action, including quick translation of research into practice; and (4) the constant data collection and reflection process facilitated by improvement methods.

BackgroundDespite a broad consensus that communities should be actively involved in improving their own health, evidence for the effect of community participation on specific health outcomes is limited. We examine the effectiveness of community participation interventions in maternal and newborn health, asking: did participation improve outcomes? We also look at how the impact of community participation has been assessed, particularly through randomised controlled trials, and make recommendations for future research. We highlight the importance of qualitative investigation, suggesting key areas for qualitative data reporting alongside quantitative work.Methods and findingsSystematic review of published and ‘grey’ literature from 1990. We searched 11 databases, and followed up secondary references. Main outcome measures were the use of skilled care before/during/after birth and maternal/newborn mortality/morbidity. We included qualitative and quantitative studies from any country, and used a community participation theoretical framework to analyse the data. We found 10 interventions. Community participation had largely positive impacts on maternal/newborn health as part of a package of interventions, although not necessarily on uptake of skilled care. Interventions improving mortality or use of skilled care raised awareness, encouraged dialogue and involved communities in designing solutions–but so did those showing no effect.DiscussionThere are few high-quality, quantitative studies. We also lack information about why participation interventions do/do not succeed – an area of obvious interest for programme designers. Qualitative investigation can help fill this information gap and should be at the heart of future quantitative research examining participation interventions – in maternal/newborn health, and more widely. This review illustrates the need for qualitative investigation alongside RCTs and other quantitative studies to understand complex interventions in context, describe predicted and unforeseen impacts, assess potential for generalisability, and capture the less easily measurable social/political effects of encouraging participation.

This ethnographic study examines how participatory spaces and citizenship are co-constituted in participatory healthcare improvement efforts. We propose a theoretical framework for participatory citizenship in which acts of citizenship in healthcare are understood in terms of the spaces they are in. Participatory spaces consist of material, temporal and social dimensions that constrain citizens’ actions. Participants draw on external resources to try to make participatory spaces more productive and collaborative, to connect and expand them. We identify three classes of tactics they use to do this: ‘plotting’, ‘transient combination’ and ‘interconnecting’. All tactics help participants assemble to a greater or lesser extent a less fragmented participatory landscape with more potential for positive impact on healthcare. Participants’ acts of citizenship both shape and are shaped by participatory spaces. To understand participatory citizenship, we should take spatiality into account, and track the ongoing spatial negotiations and productions through which people can improve healthcare.

Community participation is widely thought to be important in the improvement of healthcare delivery and in health equity. Yet there is little agreement about what 'participation' means in practice, or when it might be necessary. Drawing on the case of healthcare delivery in the UK, we examine key socio-psychological elements at the heart of community engagement with participatory processes. We explore the link between public participant identities and social representations of patient and public involvement (PPI) among healthcare professionals, and examine the role they play in supporting or undermining inclusive and bottom-up forms of PPI. The study is ethnographic, using in-depth interviews with public participants and healthcare professionals involved in PPI, and observation of PPI activities in London. We show that it is crucial to take account of more than individual participants' capacities in order to understand and improve PPI. Professionals' talk about PPI contains contradictory discourses about participant identity. These contradictions are reflected in involvees' self-understanding and experience as public participants, constraining their subjectivities and forms of knowledge, and crystallizing in their participatory practices. Involvees must negotiate professionals' negative discourses to develop self-images that reflect their own interests and projects, and that empower them to produce an effect in the public sphere. These processes can hinder successful participation even where there is an institutional infrastructure to promote civic engagement with healthcare. Understanding how involvees construct their own identities through engagement with professional discourses will help develop processes that are positive and enabling rather than negative and limiting.

This paper 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 rearticulated 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 paper illuminates how new knowledge is produced when professionals engage with "lay" patient knowledge, and helps inform the sociology of knowledge production more widely.

BackgroundYoung people’s experiences of healthcare as they move into adult services can have a major impact on their health, and the transition period for young people with sickle cell disease (SCD) needs improvement. In this study, we explore how young people with SCD experience healthcare during this period of transition.MethodsWe conducted a co-produced longitudinal qualitative study, including 80 interviews in 2016–2017 with young people with SCD aged 13–21 (mean age 16.6) across two cities in England. We recruited 48 participants (30 female, 18 male): 27 interviews were one-off, and 53 were repeated 2–3 times over approximately 18 months. We used an inductive analytical approach, combining elements of Grounded Theory and thematic analysis.ResultsParticipants reported significant problems with the care they received in A&E during painful episodes, and in hospital wards as inpatients during unplanned healthcare. They experienced delays in being given pain relief and their basic care needs were not always met. Participants said that non-specialist healthcare staff did not seem to know enough about SCD and when they tried to work with staff to improve care, staff often seemed not prepared to listen to them or act on what they said. Participants said they felt out of place in adult wards and uncomfortable with the differences in adult compared with paediatric wards. Because of their experiences, they tried to avoid being admitted to hospital, attempting to manage their painful episodes at home and accessing unplanned hospital care only as a last resort. By contrast, they did not report having problems within SCD specialist services during planned, routine care.ConclusionsOur study underscores the need for improvements to make services youth-friendly and youth-responsive, including training staff in SCD-specific care, compassionate care and communication skills that will help them elicit and act on young people’s voices to ensure they are involved in shaping their own healthcare. If young people are prevented from using transition skills (self-management, self-advocacy), or treated by staff who they worry do not have enough medical competency in their condition, they may well lose their trust in services, potentially compromising their own health.