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Objectives This follow-up study of the INSTinCTS (INjection vs SplinTing in Carpal Tunnel Syndrome) trial compared the effects of corticosteroid injection (CSI) and night splinting (NS) for the initial management of mild-to-moderate CTS on symptoms, resource use and carpal tunnel surgery, over 24 months. Methods Adults with mild-to-moderate CTS were randomized 1:1 to a local corticosteroid injection or a night splint worn for 6 weeks. Outcomes at 12 and 24 months included the Boston Carpal Tunnel Questionnaire (BCTQ), hand/wrist pain intensity numeric rating scale (NRS), the number of patients referred for and undergoing CTS surgery, and healthcare utilization. A cost–utility analysis was conducted. Results One hundred and sixteen participants received a CSI and 118 a NS. The response rate at 24 months was 73% in the CSI arm and 71% in the NS arm. By 24 months, a greater proportion of the CSI group had been referred for (28% vs 20%) and undergone (22% vs 16%) CTS surgery compared with the NS group. There were no statistically significant between-group differences in BCTQ score or pain NRS at 12 or 24 months. CSI was more costly [mean difference £68.59 (95% CI: −120.84, 291.24)] with fewer quality-adjusted life-years than NS over 24 months [mean difference −0.022 (95% CI: −0.093, 0.045)]. Conclusion Over 24 months, surgical intervention rates were low in both groups, but less frequent in the NS group. While there were no differences in the clinical effectiveness of CSI and NS, initial treatment with CSI may not be cost-effective in the long-term compared with NS.

Objectives Better indicators from affordable, sustainable data sources are needed to monitor population burden of musculoskeletal conditions. We propose five indicators of musculoskeletal health and assessed if routinely available primary care electronic health records (EHR) can estimate population levels in musculoskeletal consulters. Methods We collected validated patient-reported measures of pain experience, function and health status through a local survey of adults (≥35 years) presenting to English general practices over 12 months for low back pain, shoulder pain, osteoarthritis and other regional musculoskeletal disorders. Using EHR data we derived and validated models for estimating population levels of five self-reported indicators: prevalence of high impact chronic pain, overall musculoskeletal health (based on Musculoskeletal Health Questionnaire), quality of life (based on EuroQoL health utility measure), and prevalence of moderate-to-severe low back pain and moderate-to-severe shoulder pain. We applied models to a national EHR database (Clinical Practice Research Datalink) to obtain national estimates of each indicator for three successive years. Results The optimal models included recorded demographics, deprivation, consultation frequency, analgesic and antidepressant prescriptions, and multimorbidity. Applying models to national EHR, we estimated that 31.9% of adults (≥35 years) presenting with non-inflammatory musculoskeletal disorders in England in 2016/17 experienced high impact chronic pain. Estimated population health levels were worse in women, older aged and those in the most deprived neighbourhoods, and changed little over 3 years. Conclusion National and subnational estimates for a range of subjective indicators of non-inflammatory musculoskeletal health conditions can be obtained using information from routine electronic health records.

Background To improve quality of care for patients with hip and knee osteoarthritis (OA), general practitioners (GPs) and physiotherapists (PTs) in a Norwegian municipality initiated an intervention. The intervention aimed to increase provision of core OA treatment (information, exercise, and weight control) prior to referral for surgery, rational use of imaging for assessing OA and improve communication between healthcare professionals. This study assessed the effectiveness of this intervention. Methods Forty-eight PTs and one hundred one GPs were invited to the intervention that included two interactive workshops outlining best practice and an accompanying template for PT discharge reports. Using interrupted time series research design, the study period was divided into three: pre-implementation, transition (implementation) and post-implementation. Comparing the change between pre- and post-implementation, the primary outcome was patient-reported quality of OA care measured with the OsteoArthritis Quality Indicator questionnaire. Secondary outcomes were number of PT discharge reports, information included in GP referral letters to orthopaedic surgeon, the proportion of GP referral letters indicating use of core treatment, and the use of imaging within OA assessment. Analyses involved linear mixed and logistic regression models. Results The PT workshop had 30 attendees, and 31 PTs and 33 GPs attended the multidisciplinary workshop. Two hundred eight and one hundred twenty-five patients completed the questionnaire during pre- and post-implementation, respectively. The adjusted model showed a small, statistically non-significant, increase in mean total score for quality of OA care (mean change = 4.96, 95% CI -0.18, 10.12, p:0.057), which was mainly related to items on OA core treatment. Patients had higher odds of reporting receipt of information on treatment alternatives (odds ratio (OR) 1.9, 95% CI 1.08, 3.24) and on self-management (OR 2.4, 95% CI 1.33, 4.32) in the post-implementation phase. There was a small, statistically non-significant, increase in the proportion of GP referral letters indicating prior use of core treatment modalities. There were negligible changes in the number of PT discharge reports, in the information included in the GP referral letters, and in the use of imaging for OA assessment. Conclusion This study suggests that a primary care intervention including two inter-active workshops can shift the quality of care towards best practice recommendations. Trial registration ClinicalTrials.gov: NCT02876120.

Background\ud Public involvement in the education of students enrolled on higher education programmes has gained impetus. For students enrolled on professional health‐care programmes and health‐related modules in the UK, there is also a requirement by professional bodies to include “service user” involvement in preparation for entry to a professional health‐care register and continuing professional development. Actively involving patients and members of the public in research is also a requirement by many research funders. In this article, the term Patient and Public Involvement (PPI) will be used throughout to include lay members, volunteers, user and carers.\ud \ud Objectives\ud A unique pilot study was introduced across a health faculty to integrate PPI in a deliberate way. It aimed to provide an educational, focused programme of events that was meaningful to develop and inform peoples’ knowledge, skills and confidence for their involvement in the health faculty.\ud \ud Design\ud PPI members volunteered to sit on a steering group to determine the educational journey; the outcomes of three focus groups with PPI members (N = 32) and academics informed the programme content which included a range of workshops covering the exploration of public roles and barriers to involvement, introduction to research and interviewing skills.\ud \ud Results\ud The workshops were well attended, and outcomes indicated the importance of co‐production when designing, delivering and evaluating programmes.\ud \ud Discussion\ud Co‐production underpinned this pilot study, resulting in a programme which was meaningfully received by public contributors.\ud \ud Recommendations\ud Co‐production was seen as integral to this research to ensure that outcomes were indeed “fit for purpose”.

Summary Four focus groups were conducted with members of the public to identify important areas for future osteoporosis research. Participants identified priorities to increase public awareness of osteoporosis, reduce delays in diagnosis, improve communication between healthcare providers and to improve follow-up and information provision about causes of osteoporosis, medication harms and prognosis. Purpose Patients and the public must be involved in setting research agendas to ensure relevant and impactful questions are prioritised. This study aimed to understand what people living with osteoporosis and fragility fractures felt was important to research, to inform the content of a national survey on research priorities in this area. Methods Focus groups were conducted with members of the public with experience of osteoporosis or fragility fractures. The topic guide was co-developed with a patient and public involvement research user group, and explored participants’ experiences of osteoporosis including diagnosis, management and effect upon their lives, what aspects of their ongoing care was most important to them and what about their care or condition could be improved. Focus groups were audio-recorded, transcribed and analysed thematically. Results A total of twenty-three participants were recruited to four focus groups. Analysis identified two main themes: challenges in living with osteoporosis and healthcare services for osteoporosis. Information needs was a further cross-cutting theme. Participants called for increased public awareness of osteoporosis and wanted healthcare services to address conflicting messages about diet, exercise and medication. Participants described long delays in diagnosis, poor communication between primary and secondary care and the need for structured follow-up as important areas for future research to address. Conclusion The findings from this study provide an understanding of research priorities from the perspective of patients and the public, have informed the content of a national survey and have implications for patient education, health services research and policy.

Decision aids (DAs) are evidence-based tools that support shared decision-making (SDM) implementation in practice; this study aimed to identify existing osteoporosis DAs and assess their quality and efficacy; and to gain feedback from a patient advisory group on findings and implications for further research. We searched multiple bibliographic databases to identify research studies from 2000 to 2019 and undertook an environmental scan (search conducted February 2019, repeated in March 2020). A pair of reviewers, working independently selected studies for inclusion, extracted data, evaluated each trial's risk of bias, and conducted DA quality assessment using the International Patient Decision Aid Standards (IPDAS). Public contributors (patients and caregivers with experience of osteoporosis and fragility fractures) participated in discussion groups to review a sample of DAs, express preferences for a new DA, and discuss plans for development of a new DA. We identified 6 studies, with high or unclear risk of bias. Across included studies, use of an osteoporosis DA was reported to result in reduced decisional conflict compared with baseline, increased SDM, and increased accuracy of patients' perceived fracture risk compared with controls. Eleven DAs were identified, of which none met the full set of IPDAS criteria for certification for minimization of bias. Public contributors expressed preferences for encounter DAs that are individualized to patients' own needs and risk. Using a systematic review and environmental scan, we identified 11 decision aids to inform patient decisions about osteoporosis treatment and 6 studies evaluating their effectiveness. Use of decision aids increased accuracy of risk perception and shared decision-making but the decision aids themselves fail to comprehensively meet international quality standards and patient needs, underpinning the need for new DA development.

Large ventral hernias are a significant surgical challenge. “Loss of domain” (LOD) expresses the relationship between hernia and abdominal volume, and is used to predict operative difficulty and success. This systematic review assessed whether different definitions of LOD are used in the literature. The PubMed database was searched for articles reporting large hernia repairs that explicitly described LOD. Two reviewers screened citations and extracted data from selected articles, focusing on the definitions used for LOD, study demographics, study design, and reporting surgical specialty. One hundred and seven articles were identified, 93 full-texts examined, and 77 were included in the systematic review. Sixty-seven articles were from the primary literature, and 10 articles were from the secondary literature. Twenty-eight articles (36%) gave a written definition for loss of domain. These varied and divided into six broad groupings; four described the loss of the right of domain, six described abdominal strap muscle contraction, five described the “second abdomen”, five describing large irreducible hernias. Six gave miscellaneous definitions. Two articles gave multiple definitions. Twenty articles (26%) gave volumetric definitions; eight used the Tanaka method [hernia sac volume (HSV)/abdominal cavity volume] and five used the Sabbagh method [(HSV)/total peritoneal volume]. The definitions used for loss of domain were not dependent on the reporting specialty. Our systematic review revealed that multiple definitions of loss of domain are being used. These vary and are not interchangeable. Expert consensus on this matter is necessary to standardise this important concept for hernia surgeons. Electronic supplementary material The online version of this article (10.1007/s00268-018-4783-7) contains supplementary material, which is available to authorized users.

Background In the UK a guidebook was co-developed with UK patients during a OA research study (1). Within the JIGSAW-E (Joint Implementation of Guidelines for Osteoarthritis in Western Europe) project the guidebook is disseminated and implemented in clinical practice in 5 countries: UK, The Netherlands, Norway, Denmark and Portugal. We translated and adapted the English guidebook for use in the Netherlands. Objectives To describe the process of translating and adjusting the guidebook into Dutch, and to summarize the key lessons learned. Methods Starting point was a paid translated version of the guidebook. The translation was reviewed by an interdisciplinary working group and distributed among stakeholder organizations. Data collections took place by reports of working group meetings, written feedback from stakeholder organizations and patients’ interviews focusing on their information needs. Along the way a logbook of adaptations was kept. After triangulation of findings, adaptations were clustered in six preliminary categories and, together with lessons learned, agreed upon in a consensus meeting with the working group. Results The working group convened fifteen times. Ten patients were interviewed about the readability and usefulness of the OA guidebook. Eight out of thirteen stakeholder organizations provided feedback on the draft guidebook. Advice for adaptations related to the following preliminary categories: language; patients’ needs; cross-cultural differences; health care system; scientific evidence; structure and layout (see Table 1 for examples). Lessons learned related to the low quality of the initial translation, selection of representative working group members, selection of stakeholder organizations, and required time for thorough deliberation during meetings. Conclusion Important ingredients for a successful translation and crosscultural adaption of a guidebook (or other patient material) are: time, a professional translation (sufficient budget), relevant stakeholders, and patients who can be critical. Patients who were interviewed about the guidebook added valuable patients’ information needs, relevant to the cross-cultural adaptation. A draft framework of categories for cross-cultural adaptation is proposed. References [1] Traut, EF, et al, “Specific vascular changes in gout”, JAMA, 1954,156(6):591-593 Acknowledgement: We thank all stakeholder organizations, patients and the JIGSAW-E team for their efforts. Disclosure of Interests: None declared

Background:Since 2006, The School of Primary, Community and Social Care, Keele University has a long standing commitment to Patient and Public Involvement and Engagement (PPIE) in research. The School’s Research User Group (RUG) has 133 members in January 2020, compared to 80 members in September 2016. Supporting the practical and emotional needs of a growing number of RUG members to support their long-term involvement is of prime importance.Arising from Keele’s role as a test bed site for the new UK Public Involvement Standards, a new peer support role (the ‘RUG-Buddy’) was co-produced to facilitate the support of RUG members.Objectives:The RUG-Buddy is a peer support and mentoring scheme. More experienced RUG members attend research meetings with less experienced members to provide support and reassurance. The scheme aims to provide:•A welcoming and friendly environment for RUG members•Extra support for all RUG members before, during and after research meetings•Help new RUG members ease into public involvement•Support with discussions between researchers and RUG members, e.g. avoiding research jargon••Reassurance to new members - learning from those with greater experience of public involvement•Someone to talk to and confide in from people who have personal experience of PPIE•Practical advice on completing payment forms, parking issues, etc.Methods:Peer support is provided by a panel of existing RUG members who have substantial experience of PPIE in research. This is anadditionalmethod of supporting the RUG members alongside support provided by the School’s PPIE team. RUG-Buddies will be supported in their role by the PPIE team and provided with an induction and training. RUG-Buddies are offered payment for their time and have their travel expenses reimbursed. The RUG-Buddies scheme will be piloted during an initial 6-month period, after which it will be reviewed, with feedback from RUG-Buddies and RUG members.Results:A role description for the RUG-Buddy role has been coproduced by Keele’s PPIE team and its RUG Steering Group (Table 1). A panel of 10 RUG members have been recruited for the RUG-Buddy role and have received an induction and training (e.g. Health and Safety, Information Governance). RUG-Buddies have provided support to and attended research meetings with other RUG members. The RUG-Buddy role will be reviewed in September 2020.Table 1.Summary of the RUG-Buddy role descriptionQualities of a RUG-BuddyRUG-Buddy responsibilitiesPPIE team responsibilitiesWilling to share personal experienceTo attend up to the first three PPIE meetings of a research projectTo provide a training session for all RUG-BuddiesFriendly and approachableTo introduce new member to RUG members and research teamTo meet RUG-Buddies every two months to provide review/feedback of the roleEnthusiastic and knowledgeable about PPIE in researchTo encourage contribution to the meetingTo have a named PPIE lead for any questions/queries that may ariseBe reliable and punctualTo provide support and respond to RUG members’ questionsTo work alongside RUG-Buddy to meet and greet public membersConclusion:The RUG-Buddy is an innovative peer support scheme to support the involvement of patients and the public in research. The support provided by RUG-Buddies offers a different perspective from people with real-life experience of involvement in research. It is anticipated that this additional support will enrich the experience of RUG members and facilitate a more welcoming and conducive environment for active and meaningful public involvement. Furthermore, it has also provided an opportunity for the RUG-Buddies to gain valuable new skills and also give something back to the PPIE team and researchers who have supported their own involvement for many years.Acknowledgments:This project is funded by the National Institute for Health Research (NIHR) School for Primary Care Research (project reference 440). Thank you to the Keele Research User Group for all their great workDisclosure of Interests:None declared

Background Patient and Public Involvement (PPI) in research is a requirement of funding in the UK. It has shown to improve the relevance and quality of research. For over 10 years, a Research User Group (RUG) of over 100 patients with musculoskeletal and other long term conditions who actively work with a Research Institute.1 Researcher and anecdotal feedback from RUG members and researchers have highlighted two challenging PPI roles: lay co-applicants on research grants and lay membership of trial study steering committees (TSCs). For some RUG members, this has resulted in a less positive experience and a disinterest in having these important roles in the future Objectives To address the challenges of involving RUG members as co-applicants and as members of TSCs, and to describe ways of supporting RUG members in these roles. Methods Information to improve understanding of the challenges of these roles were gathered during group meetings and informal conversations with 13 RUG members, and a workshop with 35 researchers. PPI and researcher perspectives were captured on flipcharts, notes and meeting minutes. This information shaped the development of resources and approaches to support RUG members as lay co-applicants and TSC members. Results Conclusions Providing support to RUG members and researchers can sustain active and long-term lay involvement in these challenging yet important research roles. Reference [1] Jinks, et al. Res Involv Engagem2016;2:1. Acknowledgements We thank all RUG members for their contribution to our research, and R Taylor, C Ingram, C Walker, S Dent, P Callaghan for their input to training and guidance. We thank the Primary Care Consortium and Arthritis Research UK for supporting the RUG. KD is part-funded by a NIHR Knowledge Mobilisation Research Fellowship (KMRF-2014–03–002). Disclosure of Interest None declared

Background A guidebook for patients with osteoarthritis (OA) was co-developed with UK patients during an OA research study.1–3 The JIGSAW-E project is now disseminating and implementing the OA management guidelines and Guidebook in clinical practice in UK, Netherlands, Norway, Denmark and Portugal.4 Objectives To study the translation and cultural adaptations of the OA Guidebook appropriate for local context and use by patient champions and health professionals together. Methods A project launch meeting led to the creation of an international panel of Patient Champions and the adaptation of the OA Guidebook as a priority project. 15 Patient Champions with OA were collaborative partners of the project’s local Communities of Practices (CoP) (UK:2, Norway:2, Netherlands:5, Denmark:5, Portugal:1) (figure 1). CoPs also engaged with OA patient organisations. Cultural adaptation of the OA Guidebook by CoPs: 1) review of UK OA Guidebook and existing written patient information; 2) translation; 3) cultural adaptation: review of content, images and layout; 4) consistency check with national guidelines; 5) production; 6) review and approval; 7) shared learning across countries via Skype. Each CoP adopted a process appropriate to their specific context Results Conclusions It is feasible and effective to involve patient champions in the cultural adaptation and dissemination of consistent and accurate patient information to support the implementation of OA guidelines in clinical practice. References [1] ] Health Expect2014;17:164–73. [2] ] BMC Musculoskelet Disord2014;15:427. [3] ] Osteoarthritis Cartilage2018;26:43–53. [4] ] Physiotherapy2016;102:e138–9. Acknowledgements Thank you to all the Patient Champions for their contributions to JIGSAW-E. A. Rosager and L. Baumbasch led the Danish adaptation. JIGSAW-E is funded by EIT Health. KD is part funded by a NIHR Knowledge Mobilisation Research Fellowship (KMRF201403002). The MOSAICS study was funded by NIHR Programme Grant (RP-PG-0407–10386). Disclosure of Interest None declared

Plain English summary In the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these services. To explore the extent, quality and impact of patient and public involvement (PPI) in primary care research, we examined documents of 200 projects and surveyed 191 researchers. We found that about half of studies included PPI to develop research ideas and during the study itself. Common activities included designing study materials, advising on methods, and managing the research. Some studies did not undertake the PPI activities initially planned and funded for. PPI varied by study design, health condition and study population. We found pockets of good practice: having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However, good practice was lacking in other areas. Few projects offered PPI contributors training, used PPI to develop information for participants about study progress and included PPI to advise on publishing findings. Researchers reported beneficial impacts of PPI. Most impact was reported when the approach to PPI included more indicators of good practice. The main cost of PPI for researchers was their time. Many reported difficulties providing information about PPI. In partnership with PPI contributors, we have used these findings to develop:a new Cost and Consequences Framework for PPI highlighting financial and non-financial costs, benefits and harms of PPIFifteen co-produced recommendations to improve the practice and delivery of PPI. Abstract Background: To improve the lives of patients in primary care requires the involvement of service users in primary care research. We aimed to explore the extent, quality and impact of patient and public involvement (PPI) in primary care research. Methods: We extracted information about PPI from grant applications, reports and an electronic survey of researchers of studies funded by the NIHR School for Primary Care Research (SPCR). We applied recognised quality indicators to assess the quality of PPI and assessed its impact on research. Results: We examined 200 grant applications and reports of 181 projects. PPI was evident in the development of 47 (24%) grant applications. 113 (57%) grant applications included plans for PPI during the study, mostly in study design, oversight, and dissemination. PPI during projects was reported for 83 (46%) projects, including designing study materials and managing the research. We identified inconsistencies between planned and reported PPI. PPI varied by study design, health condition and study population. Of 46 (24%) of 191 questionnaires completed, 15 reported PPI activity. Several projects showed best practice according to guidelines, in terms of having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However few projects offered PPI contributors training, used PPI to develop information for participants about study progress, and had PPI in advising on dissemination. Beneficial impacts of PPI in designing studies and writing participant information was frequently reported. Less impact was reported on developing funding applications, managing or carrying out the research. The main cost of PPI for researchers was their time. Many researchers found it difficult to provide information about PPI activities. Our findings informed:a new Cost and Consequences Framework for PPI in primary care research highlighting financial and non-financial costs, plus the benefits and harms of PPIFifteen co-produced recommendations to improve PPI in research and within the SPCR. Conclusions: The extent, quality and impact of PPI in primary care research is inconsistent across research design and topics. Pockets of good practice were identified making a positive impact on research. The new Cost and Consequences Framework may help others assess the impact of PPI. Electronic supplementary material The online version of this article (10.1186/s40900-018-0100-8) contains supplementary material, which is available to authorized users.

Conference abstract.

Background In 2016, the Research Institute (RI), Primary Care and Health Sciences, Keele University, UK, celebrated 10 years of Patient and Public Involvement and Engagement (PPIE) in research of musculoskeletal and other long term conditions. Our Research User Group (RUG) with over 90 members with a range of long-term conditions, actively work with research teams on studies. Many of whom have been involved in ten studies of different inflammatory conditions. We provide two case studies: 1) CONTACT: a trial comparing the effectiveness and side-effects of two commonly-used drugs (Naproxen and low-dose Colchicine) to treat acute gout in primary care; 2) A qualitative interview study with people with rheumatoid arthritis (RA) who had attended a nurse-led review clinic, which included identifying people at risk of anxiety and depression. Objectives To describe how PPIE helped shape the design and delivery of the CONTACT and qualitative interview studies. Methods 1) For the CONTACT trial, two RUG members with experience of gout joined the Trial Steering Committee. Another seven RUG members formed an advisory group to provide the patient perspective on trial procedures. 2) For the qualitative interview study, a group of eight people with RA from a local rheumatology centre (Haywood User Group) commented on the documents for the ethics application and met to discuss data analysis and dissemination. Results 1) In the CONTACT trial, RUG members made a difference by: Commenting on the trial design and acceptability of the drug intervention Helping to produce clear and user-friendly information sheets for participants in the trial. Provide practical advice regarding how participants were recruited Future RUG involvement will include helping to interpret the trial findings planning further dissemination and discussing future research studies. 2) In the qualitative interview study, the PPIE group: Contributed to the development of readable patient questionnaires for use in the clinic Offered their perspectives on the interpretation of the qualitative data Helped develop a leaflet to inform patients about mood problems related to rheumatoid arthritis and where help could be sought Contributed to the establishment of an RA annual review clinic at the local hospital Advised on the dissemination of results to a lay audience Generated ideas for a study about the delivery of RA annual review clinics in primary care, supporting a related grant application Conclusions Both studies demonstrated the wide-ranging benefits of PPIE input throughout the research cycle of identification, designing, managing and disseminating research. The RI will continue to involve patients with long-term conditions in studies for the benefit of the wider patient community. Acknowledgements We thank all of our Research User Group members for their valuable time and contribution to the RI9s research. CONTACT was funded by the NIHR School for Primary Care Research. The RA qualitative study was funded by the Scientific Foundation Board of the Royal College of General Practitioners and the Haywood Foundation. KD is part-funded by a NIHR Knowledge Mobilisation Research Fellowship (KMRF-2014–03–002). CCG is part funded by the NIHR Collaborations for Leadership in Applied Research and Care West Midlands. Disclosure of Interest None declared

Background EULAR guidelines for osteoarthritis (OA) endorse high quality care and support to self-manage with core recommended treatments such as exercise, weight loss and the provision of written information and education. An EU-funded project, Joint Implementation of Guidelines for oSteoArthritis in Western Europe (JIGSAW-E) 1 , aims to improve the management of OA across five European countries (UK, Netherlands, Norway, Denmark, Portugal) by implementing an intervention to enhance the OA consultation. Coordinated, cross-border Patient and Public Involvement and Engagement (PPIE), working in active partnership with the project team, is an essential component of JIGSAW-E. Objectives To describe the PPIE in the JIGSAW-E project. Methods A two-day international workshop established the JIGSAW-E Patient Panel to act as the voice of patients and the public in the project and to co-develop clear information and resources for patients. Panel members meet regularly with the project teams in each country. The Patient Panel is coordinated and supported by dedicated PPIE teams in the UK and Netherlands. Results The JIGSAW-E Patient Panel consists of Patient Champions and patient representatives from newly established or existing patient groups in each of the five countries. The Patient Champions form a core group of seven patient representatives who work closely with the Patient Panel and the JIGSAW-E team. PPIE activities have included: One Patient Champion sits on the JIGSAW-E project steering committee. In the Netherlands, Patient Panel members substantially contributed to the translation and cultural adaptation of a guidebook for patients with OA. This process will continue as JIGSAW-E is rolled out in each of the five countries. Patient Panel members in the UK have helped refine an OA Quality Indicator questionnaire 2 for use in JIGSAW-E. A glossary of terms has been developed to support the involvement of Patient Panel members throughout the project. Conclusions Effective and meaningful PPIE is a central component to delivery and success of raising awareness and implementing the OA management recommendations on a national level. The Patient Panel represents a step forward in international collaboration of PPIE within implementation projects. The Patient Panel is producing culturally appropriate and relevant information and resources for patients in five European countries. Future activities may include the development of patient stories to support increased adoption of JIGSAW-E, providing the patient perspective during training of health care professionals, and the digitisation of patient resources into Smartphone or tablet Apps. References https://goo.gl/a4xYUV. Blackburn et al. Res. Involvement and Engagement (2016) 2:5. doi: 10.1186/s40900-016-0019-x. Acknowledgements JIGSAW-E is funded via the West Midlands AHSN by EITHealth. Funding from the WM AHSN, the Regional Innovation Fund NHS England and Shropshire CCG. KD is part funded by a Knowledge Mobilisation Research Fellowship (KMRF201403002) from the NIHR. Disclosure of Interest None declared

Background Patient‐reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development Objective This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time. Search strategy Literature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register. Inclusion criteria Studies were included if they described a new PROM development. Data extraction Basic information and information regarding patient involvement in development phases was recorded. Main results A total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time. Conclusions Although patient involvement in PROM development is essential to develop valid patient‐centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.

Objectives Current musculoskeletal outcome tools are fragmented across different healthcare settings and conditions. Our objectives were to develop and validate a single musculoskeletal outcome measure for use throughout the pathway and patients with different musculoskeletal conditions: the Arthritis Research UK Musculoskeletal Health Questionnaire (MSK-HQ). Setting A consensus workshop with stakeholders from across the musculoskeletal community, workshops and individual interviews with a broad mix of musculoskeletal patients identified and prioritised outcomes for MSK-HQ inclusion. Initial psychometric validation was conducted in four cohorts from community physiotherapy, and secondary care orthopaedic hip, knee and shoulder clinics. Participants Stakeholders (n=29) included primary care, physiotherapy, orthopaedic and rheumatology patients (n=8); general practitioners, physiotherapists, orthopaedists, rheumatologists and pain specialists (n=7), patient and professional national body representatives (n=10), and researchers (n=4). The four validation cohorts included 570 participants (n=210 physiotherapy, n=150 hip, n=150 knee, n=60 shoulder patients). Outcome measures Outcomes included the MSK-HQ's acceptability, feasibility, comprehension, readability and responder burden. The validation cohort outcomes were the MSK-HQ's completion rate, test–retest reliability and convergent validity with reference standards (EQ-5D-5L, Oxford Hip, Knee, Shoulder Scores, and the Keele MSK-PROM). Results Musculoskeletal domains prioritised were pain severity, physical function, work interference, social interference, sleep, fatigue, emotional health, physical activity, independence, understanding, confidence to self-manage and overall impact. Patients reported MSK-HQ items to be ‘highly relevant’ and ‘easy to understand’. Completion rates were high (94.2%), with scores normally distributed, and no floor/ceiling effects. Test–retest reliability was excellent, and convergent validity was strong (correlations 0.81–0.88). Conclusions A new musculoskeletal outcome measure has been developed through a coproduction process with patients to capture prioritised outcomes for use throughout the pathway and with different musculoskeletal conditions. Four validation cohorts found that the MSK-HQ had high completion rates, excellent test–retest reliability and strong convergent validity with reference standards. Further validation studies are ongoing, including a cohort with rheumatoid/inflammatory arthritis.

We conducted a systematic review of the applications and technical features of digital interactive television (DITV) in the health and social care fields. The Web of Knowledge and IEEE Xplore databases were searched for articles published between January 2000 and March 2010 which related to DITV systems facilitating the communication of information to/from an individual's home with either a health or social care application. Out of 1679 articles retrieved, 42 met the inclusion criteria and were selected for review. An additional 20 articles were obtained from online grey literature sources. Twenty-five DITV systems operating in health and social care were identified, including seven commercial systems. The most common applications were related to health care, such as vital signs monitoring (68% of systems) and health information or advice (56% of systems). The most common technical features of DITV systems were two-way communication (88%), medical peripherals (68%), on-screen messaging (48%) and video communication (36%). Digital interactive television has the potential to deliver health and social care to people in their own homes. However, the requirement for a high-bandwidth communications infrastructure, the usability of the systems, their level of personalisation and the lack of evidence regarding clinical and cost-effectiveness will all need to be addressed if this approach is to flourish.

Background\ud The international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can play; assessing impact of PPI and recommendations for good PPI practice. One area of investigation that is less developed is the sustainability and impact of PPI beyond involvement in time-limited research projects.\ud \ud Methods\ud This paper focuses on the issues of sustainability, the importance of institutional leadership and the creation of a robust infrastructure in order to achieve long-term and wide-ranging PPI in research strategy and programmes.\ud \ud Results\ud We use the case of a Primary Care Research Centre to provide a historical account of the evolution of PPI in the Centre and identified a number of key conceptual issues regarding infrastructure, resource allocation, working methods, roles and relationships.\ud \ud Conclusions\ud The paper concludes about the more general applicability of the Centre’s model for the long-term sustainability of PPI in research.

The launch of the £80m Preventative Technology Grant in 2006 has resulted in a considerable interest in telecare. Yet where in this emerging area should efforts be concentrated, and what lessons can be learnt from previous trials to aid future deployments? Based on practical experience and the work of the Housing & Telecare Learning & Improvement Networks at the Care Service Improvement Partnership (CSIP), Department of Health, this paper presents some of the common issues experienced and identified when implementing telecare. It makes a number of useful suggestions on how organisations working across housing, health and social care can make best use of telecare when planning, commissioning and delivering services.

Background There is currently no standardized process for long-term follow-up care. As a result, management of post-stroke care varies greatly, and the needs of stroke survivors are not fully addressed. The Post Stroke Checklist was developed by the Global Stroke Community Advisory Panel as a means of standardizing long-term stroke care. Since its development, the Post Stroke Checklist has gained international recognition from various stroke networks and is endorsed by the World Stroke Organization to support improved stroke survivor follow-up and care. Aims The aim of this study was to evaluate the feasibility and usefulness of the Post Stroke Checklist in clinical practice and assess its relevance to stroke survivors in pilot studies in the United Kingdom and Singapore. Methods The Post Stroke Checklist was administered to stroke survivors in the United Kingdom ( n = 42) and Singapore ( n = 100) by clinicians. To assess the feasibility of the Post Stroke Checklist in clinical practice, an independent researcher observed the assessment and made notes relating to the patient–clinician interaction and their interpretations of the Post Stroke Checklist items. Patient and clinician satisfaction with the Post Stroke Checklist was assessed by three questions, responded to on a 0–10 numerical rating scale. Clinicians also completed a Pragmatic Face and Content Validity test to evaluate their overall impressions of the Post Stroke Checklist. In the United Kingdom, a subset of patients ( n = 14) took part in a concept elicitation interview prior to being administered the Post Stroke Checklist, followed by a cognitive debriefing interview to assess relevance and comprehension of the Post Stroke Checklist. Results The Post Stroke Checklist identified frequently reported problems for stroke survivors including cognition (reported by 47·2% of patients), mood (43·7%), and life after stroke (38%). An average of 3·2 problems per patient was identified across both countries (range 0–10). An average of 5 and 2·6 problems per patient were identified in the United Kingdom and Singapore, respectively. The average time taken to administer the Post Stroke Checklist was 17 mins (standard deviation 7·5) in Singapore and 13 mins (standard deviation 7·6) in the United Kingdom. Satisfaction ratings were high for patients (8·6/10) and clinicians (7·7/10), and clinician feedback via the Pragmatic Face and Content Validity test indicated that the Post Stroke Checklist is ‘useful’, ‘informative’, and ‘exhaustive’. All concepts measured by the Post Stroke Checklist were spontaneously discussed by patients during the concept elicitation interviews, suggesting that the Post Stroke Checklist is relevant to stroke survivors. Cognitive debriefing data indicated that the items were generally well understood and relevant to stroke. Minor revisions were made to the Post Stroke Checklist based on patient feedback. Conclusions The findings suggest that the Post Stroke Checklist is a feasible and useful measure for identifying long term stroke care needs in a clinical practice setting. Pilot testing indicated that the Post Stroke Checklist is able to identify a wide range of unmet needs, and patient and clinician feedback indicated a high level of satisfaction with the Post Stroke Checklist assessment. The items were generally well understood and considered relevant to stroke survivors, indicating the Post Stroke Checklist is a feasible, useful, and relevant measure of poststroke care.

Objectives Musculoskeletal pain is the single greatest cause of years lived with disability. This can include osteoarthritis, inflammatory disorders and musculoskeletal disorders such as back, neck, shoulder, hip, and knee pain. The Arthritis UK Musculoskeletal Health Questionnaire (MSK-HQ) was developed as a generic, single measure musculoskeletal outcome measure that can be used throughout the healthcare pathway and with patients with different musculoskeletal conditions. Methods The MSK-HQ was co-produced with patients and clinicians to identify aspects of MSK health that are important to both. A consensus workshop provided initial domains, and individual items were formulated. Stakeholder acceptability was measured using a second workshop and a candidate MSK-HQ was then taken forward to quantitative testing in physiotherapy and orthopaedic cohorts (n=570). Results The MSK-HQ was found to have face and content validity through the workshops, and was psychometrically robust, showing good completion rates, excellent test-retest reliability, and strong convergent validity with reference standards. Key outcome domains prioritised by patients with MSK conditions and seen as important across the clinical pathway were included within the MSK-HQ. These are captured using 14 items to measure pain severity (during the day and night), physical function (walking and dressing), work interference, social interference, sleep, fatigue, emotional health, physical activity, independence, understanding, confidence to self-manage, and overall-impact. Conclusions The MSK-HQ has been shown to be an excellent single, generic measure of musculoskeletal conditions, and has good psychometric properties of validity and reliability. It is acceptable to patients as relevant and easy to understand and has low levels of responder burden. Further work will encompass more validation studies, including factor structure and responsiveness, as well as cohort studies with rheumatoid/inflammatory arthritis.

Background Patient and public involvement (PPI) in identifying topics for research ensures relevant, impactful research questions and is expected by research funders. We have undertaken a two-stage national priority setting exercise to identify public views on research priorities in osteoporosis. Four focus groups were undertaken with members of the National Osteoporosis Society (NOS) and a research cohort of people who had experienced fracture. A national e-survey was sent to members of the NOS. PPI was embedded throughout to inform study design, analysis and reporting. Objectives To describe the role and impact of a Research User Group in co-designing priority setting methods for osteoporosis research. Methods Three face-to-face advisory group meetings were held with members of the Research Institute9s Research User Group (RUG). All members have bone and muscle pain. Meeting 1 occurred before the focus groups. A draft topic guide was discussed. Meeting 2 occurred after all focus groups were completed and before the e-survey went live. Before this meeting researchers undertook some analysis of focus group data to identify specific research questions or uncertainties about treatments and produced a draft e-survey. Each section and question was discussed with the RUG alongside relevant data from the focus groups to clarify concepts and wording. Meeting 3 focussed on e-survey results and co-design of recommendations on research priorities. Results Five RUG members participated. In meeting 1 RUG members advised on general topics to include in the focus group discussion and the order of questions to be asked. The group had innovative ideas about how best to ask participants to prioritise topics discussed and suggested using “post-it” notes which the researchers subsequently implemented. In meeting 2 researchers presented how emerging themes from the focus groups could be turned into questions for the e-survey. Some themes were felt to be “straightforward”, and for these RUG members advised on question wording. Some themes were less well crystallised (e.g. support, confidence), and for these, the RUG members interpreted meaning from quotes. Discussions led to clarity about what the question should be about and wording amended. The RUG identified overlap between questions and the need to simplify the introduction to the e-survey. Researchers redrafted and re-circulated the survey. RUG members fed back further comments by email, particularly regarding the order of presented questions and suggesting reordering in line with patient experiences. This meant moving the questions about diagnosis to an earlier part of the questionnaire. The final meeting was held after the e-survey closed. Summary results from the e-survey were presented and RUG members discussed how results should be presented in a final report. Conclusions Patient and public involvement was integral to the design and analysis of this UK osteoporosis research priority setting exercise at three key points. This iterative process enabled active involvement throughout and impacted on focus group and e-survey design and the development of research strategy recommendations. Acknowledgement We would like to thank the PPI team at Keele who helped to set up the RUG groups and the focus group participants and people who responded to the e-survey. Disclosure of Interest None declared

Summary In a controlled study of older people living in sheltered housing (retirement housing), 24 people provided with telecare were compared with a control group of 28 people. The intervention consisted of second generation telecare equipment, such as automatic flood or falls detectors, a third generation lifestyle reassurance system and an Internet café. After a 12-month monitoring period, there was no noticeable change in the fear of falling. There was no significant difference for eight of the nine SF-36 domains. However, the Social Functioning domain showed a significant difference ( P = 0.049), with scores 8% higher in the intervention group, suggesting a beneficial effect of telecare. Positive trends were also evident in areas such as an increase in the length of time spent out of the home, improved feelings of safety during the day and night, and a reduction in the fear of crime. The Internet café was used by 25% of people for at least 20 min per week. The results suggest that second generation telecare systems and Internet facilities could be more widely used in service delivery, but that lifestyle reassurance requires further development.