Collaborating with patient and public members in developing the COVID - Curated and open analysis and research platform (CO-CONNECT).

Objectives We aimed to support the work of CO-CONNECT by meaningfully involving patient and public members across all project work packages.  In addition, we aimed to ensure that the team members and outputs are connected to public perspectives and that public voices are adequately represented and embedded throughout CO-CONNECT. Approach We have two public members on our leadership team who co-lead our Patient and Public Involvement and Engagement (PPIE) work stream with support from academics.  They convened a “Public User Group” (PUG) of five public members from across the United Kingdom who regularly contribute to all aspects of CO-CONNECT.  Our PPIE work was co-produced with our public members and a PPIE strategy was developed to ensure meaningful involvement throughout CO-CONNECT.  At the beginning of the project, we developed an information pack for our public members to provide insight into CO-CONNECT and the importance of their role. Results To ensure complete transparency with the public, our PUG members attend and actively contribute to all team meetings within CO-CONNECT.  This provides opportunities for public voices to be heard and acted upon in relation to questions about the use of, and access to, healthcare data in healthcare research.  PUG members have contributed to the development of the CO-CONNECT website including providing information for biographies to increase public awareness of the involvement of public members in CO-CONNECT.  They have written blogs and been interviewed for newsletter articles on the important of public involvement in research.  Together we have created videos discussing their experience of being involved with CO-CONNECT and created a set of “Frequently Asked Questions” to provide more information about CO-CONNECT for the public-facing website. Conclusion The PPIE work within CO-CONNECT has created an innovative approach to ensuring public voices are heard and acted upon within data linkage networks.  This model has the potential to be used in future projects to ensure inclusive and meaningful involvement of patient and public members in healthcare research

Understanding the lived experience of chronic pain:A systematic review and synthesis of qualitative evidence syntheses

Background: Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom.Methods: Four bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives who co-created twenty survey statements. The survey was developed for testing the QES themes for validity in people living with pain.Results: The research team identified and screened 1323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to myself; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a 2-week period in November 2021, and was completed by 1219 people, largely confirming the above themes.Conclusion/Implications: This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool

The Alleviate Advanced Pain Discovery Platform Data Hub:A national resource for accessing and sharing pain data

There are many clinical and non-clinical datasets investigating pain that have been collected by researchers over many years, however, finding and getting access to them is challenging. The data are siloed in hard-to-reach places, in non-standard formats, and it is not possible to assess how relevant they are before getting access. This is a barrier to the pain research community and results in duplication of effort. It does not have to be this way and there are alternative solutions available. Alleviate is an HDR UK Data Hub for the federated querying and secure sharing of UK pain data to researchers, analysts and clinicians at a national and international level. Alleviate is the Data Hub for the Advanced Pain Discovery Platform (APDP), a £24 million research initiative to break through the complexity of pain and reveal potential new treatment approaches to address a wide spectrum of chronic and debilitating clinical conditions

Perioperative exercise programmes to promote physical activity in the medium to long term: systematic review and qualitative research

Background: In England, more than 4 million hospital admissions lead to surgery each year. The perioperative encounter (from initial presentation in primary care to postoperative return to function) offers potential for substantial health gains in the wider sense and over the longer term. Objectives: The aim was to identify, examine and set in context a range of interventions applied perioperatively to facilitate physical activity in the medium to long term. Data sources: The following databases were searched – Cochrane Central Register of Controlled Trials, MEDLINE, the Cumulative Index to Nursing and Allied Health Literature, EMBASE, PsycINFO and SPORTDiscus in October 2020. Clinical trials databases were also searched, and backward and forward citation searches were conducted. Review methods: We undertook a systematic review; ran database searches in October 2020; extracted data; conducted risk-of-bias assessments of studies; and used Grading of Recommendations Assessment, Development and Evaluation assessments. We conducted focus groups and interviews with people running services designed to promote physical activity, to understand the practical and contextual factors that make such interventions ‘work’. Although the two streams of work were conducted independently, we considered overlapping themes from their findings. Results: In the review, we found 51 randomised controlled trials and two quasi-randomised trials; nine non-randomised studies formed a supplementary data set. Studies included 8604 adults who had undergone (or were undergoing) surgery, and compared 67 interventions facilitating physical activity. Most interventions were started postoperatively and included multiple components, grouped as follows: education and advice, behavioural mechanisms and physical activity instruction. Outcomes were often measured using different tools; pooling of data was not always feasible. Compared with usual care, interventions may have slightly increased the amount of physical activity, engagement in physical activity and health-related quality of life at the study’s end (moderate-certainty evidence). We found low-certainty evidence of an increase in physical fitness and a reduction in pain, although effects generally favoured interventions. Few studies reported adherence and adverse events; certainty of these findings was very low. Although infrequently reported, participants generally provided positive feedback. For the case studies, we conducted two online focus groups and two individual interviews between November 2020 and January 2021, with nine participants from eight services of physical activity programmes. Conceptual and practical aspects included how the promotion of physical activity can be framed around the individual to recruit and retain patients; how services benefit from committed and compassionate staff; how enthusiasts, data collection and evidence play key roles; and how digital delivery could work as part of a blended approach, but inequalities in access must be considered. Limitations: Outcome measures in the review varied and, despite a large data set, not all studies could be pooled. This also limited the exploration of differences between interventions; components of interventions often overlapped between studies, and we could not always determine what ‘usual care’ involved. The case study exploration was limited by COVID-19 restrictions; we were unable to visit sites and observe practice, and the range of services in the focus groups was also limited. Conclusions: Evidence from the review indicates that interventions delivered in the perioperative setting, aimed at enhancing physical activity in the longer term, may have overall benefit. The qualitative analysis complemented these findings and indicated that interventions should be focused around the individual, delivered locally and compassionately, and promoted by a patient’s full clinical team. There is a need to develop a core outcome set for similar studies to allow quantitative synthesis. Future work should also investigate the experiences of patients in different contexts, such as different communities, and with different surgical indications

Effectiveness of the perioperative encounter in promoting regular exercise and physical activity: a systematic review and meta-analysis

Background Low levels of physical activity (PA) are associated with poorer health outcomes. The perioperative encounter (extending from initial contact in primary care to beyond discharge from hospital) is potentially a good time to intervene, but data regarding the effectiveness of interventions are scarce. To address this, we systematically reviewed existing literature to evaluate the effectiveness of interventions applied perioperatively to facilitate PA in the medium to long-term (at least six months after the intervention). Methods In this systematic review and meta-analysis, we searched Central Register of Controlled Trials (CENTRAL, Cochrane Library), MEDLINE, CINAHL, Embase, PsycInfo, and SPORTDiscus from database inception to October 22nd 2020, with an updated search done on August 4th 2022. We searched clinical trials registers, and conducted forward- and backward-citation searches. We included randomised controlled trials and quasi-randomised trials comparing PA interventions with usual care, or another PA intervention, in adults who were scheduled for, or had recently undergone, surgery. We included trials which reported our primary outcomes: amount of PA or whether participants were engaged in PA at least six months after the intervention. A random effects meta-analysis was used to pool data across studies as risk ratios (RR), or standardised mean differences (SMDs), which we interpreted using Cohen. We used the Cochrane risk of bias tool and used GRADE to assess the certainty of the evidence. This study is registered with PROSPERO, CRD42019139008. Findings We found 57 trials including 8548 adults and compared 71 interventions facilitating PA. Most interventions were started postoperatively and included multiple components. Compared with usual care, interventions may slightly increase the number of minutes of PA per day or week (SMD 0.17, 95% CI 0.09–0.26; 14 studies, 2172 participants; I2 = 0%), and people's engagement in PA at the study's end (RR 1.19, 95% CI 0.96–1.47; 9 studies, 882 participants; I2 = 25%); this was moderate-certainty evidence. Some studies compared two different types of interventions but it was often not feasible to combine data in analysis. The effect estimates generally indicated little difference between intervention designs and we judged all the evidence for these comparisons to be very low certainty. Thirty-six studies (63%) had low risk of selection bias for sequence generation, 27 studies (47%) had low risk of bias for allocation concealment, and 56 studies (98%) had a high risk of performance bias. For detection bias for PA outcomes, we judged 30 studies (53%) that used subjective measurement tools to have a high risk of detection bias. Interpretation Interventions delivered in the perioperative setting, aimed at enhancing PA in the medium to long-term, may have overall benefit. However, because of imprecision in some of the findings, we could not rule out the possibility of no change in PA

Strategies supporting sustainable prescribing safety improvement interventions in English primary care: A qualitative study

Background: While the use of prescribing safety indicators (PSI) can reduce potentially hazardous prescribing, there is a need to identify actionable strategies for the successful implementation and sustainable delivery of PSI-based interventions in general practice.Aim: To identify strategies for the successful implementation and sustainable use of PSI-based interventions in routine primary care.Design & setting: Qualitative study in primary care settings across England.Method: Anchoring on a complex pharmacist-led IT-based intervention (PINCER) and clinical decision support (CDS) for prescribing and medicines management, a qualitative study was conducted using sequential, multiple methods. The methods comprised documentary analysis, semi-structured interviews, and online workshops to identify challenges and possible solutions to the longer-term sustainability of PINCER and CDS. Thematic analysis was used for the documentary analysis and stakeholder workshops, while template analysis was used for the semi-structured interviews. Findings across the three methods were synthesised using the RE-AIM (reach, efficacy, adoption, implementation, and maintenance) framework.Results: Forty-eight documents were analysed, and 27 interviews and two workshops involving 20 participants were undertaken. Five main issues were identified, which aligned with the adoption and maintenance dimensions of RE-AIM: fitting into current context (adoption); engaging hearts and minds (maintenance); building resilience (maintenance); achieving engagement with secondary care (maintenance); and emphasising complementarity (maintenance).Conclusion: Extending ownership of prescribing safety beyond primary care-based pharmacists, and achieving greater alignment between general practice and hospital prescribing safety initiatives, is fundamental to achieve sustained impact of PSI-based interventions in primary care