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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.

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.

All abstracts from the NIHR INVOLVE Conference 2017. Poster 27 - P27 Discovering the role of public co-applicant on a National Institute for Health Research (NIHR) Programme grant Research Involvement and Engagement 2017, 3(Suppl 1):P27

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

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.

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.

Background Back pain can have a major impact on someone9s quality of life and ability to return to work. However, getting the right treatment to the right patients at the right time is difficult. Recent research 1 showed the effectiveness of a new way of allocating matched treatment to different patient groups based on their risk of poor outcomes (the “STarTBack” approach). It reduces disability, time off work and healthcare costs. STarTBack is recognised internationally as improving the care pathway for back pain patients but the challenge is taking it forward into routine clinical practice. Objectives To describe public involvement (PI) in taking the successful STarTBack research into routine clinical practice. Methods Providing clear and useful patient information was a key feature of the successful rollout of STarTBack. A PI group helped develop: 1) an information sheet on living with back pain given to patients during a GP consultation; 2) public pages of a STarTBack website; 3) a “Making Every Contact Count” manual to help health professionals have a conversation with patients about their back pain; and 4) a questionnaire to collect the patient experience of STarTBack. The project team met with the PI group on three occasions and provided regular feedback about their contribution. Results Six patients with back pain (three males, three females) formed the PI group. 1) Back pain information sheet: PI members highlighted the best aspects of two leaflets on back pain 2,3 (e.g. simple advice, useful images, clear layout), and suggested how existing information used in local GP practices for patients about living with back pain (provided by the patient.co.uk) could be adapted to include these. 2) STarTBack Website: PI members suggested content for the public pages of the STarTBack website that patients with back pain would find useful (www.keele.ac.uk/sbst/patients). 3) ‘Making Every Contact Count’ manual: PI members advised on the clarity, appropriateness and phrasing of key messages and example discussion prompts recommended for use by health professionals during conversations with patients with back pain. 4) Patient experience questionnaire: PI members thought existing NICE quality standard statements for patient experience of health services 4 were too long for use in a patient questionnaire. Members therefore suggested new items for a brief questionnaire based on their own back pain experiences. Conclusions Public involvement has provided a valuable contribution to the roll out of a successful research study into routine clinical practice to improve the treatment of patients with back pain. The PI group has improved the content and clarity of materials used to provide patient information, aid conversations between health professionals and patients with back pain, and collect the patient experience of STarTBack. The uptake and use of the STarTBack approach in local GP practices will be audited and evaluated during 2015-16. References Hill et al, Lancet,2011;378(9802):1560-1571 www.arthritisresearchuk.org/arthritisinformation/conditions/backpain www.patient.co.uk/pdf/4202.pdf www.nice.org.uk/guidance/qs15 Acknowledgements Supported by West Midlands Academic Health Science Network and NIHR Collaborations for Leadership in Applied Health Research and Care West Midlands. KS is funded by a NIHR Knowledge Mobilisation grant (KS, KMF-2012-01-35). Disclosure of Interest None declared

Background An NIHR funded research programme of linked studies to optimise the management of osteoarthritis (OA) in primary care embedded Patient and Public Involvement (PPI) throughout. Objectives To describe PPI involvement throughout a large five-year research programme in OA. Methods PPI followed the INVOLVE framework with projects nested throughout the research cycle. Research User Group (RUG) members helped to shape the development of the research programme, which included a new model of primary care consultations for OA. 1 A PPI co-applicant was named in the programme grant submission. During the research programme, a dedicated OA RUG was formed from existing members of the RUG to contribute to all aspects of the programme. The PPI was funded from the programme grant and supported by a dedicated PPI team. PPI members sat on Steering Committees or advisory groups for individual studies. PPI ranged from designing and managing clinical trials; advising on the interventions; developing information and questionnaires for patients; generating training material for GPs and practice nurses; and reporting findings. Results PPI views on the development of the OA research programme influenced guidance for patients on self-managing OA and the development of a guidebook about living with OA. The guidebook became a central component of the research programme. PPI members helped interpret patients9 views about self-managing OA, which influenced the interventions. Other key achievements included: 1) taking part in a consensus study to devise a model GP consultation for OA (later trialled), 2) developing a questionnaire to assess the quality of primary care consultations for OA, 3) advising on the content and wording of study questionnaires, 4) understanding and interpreting data collected from patients with OA and depression, 5) taking part in a video used to train GPs and practice nurses in the new consultation model, 6) presenting research programme findings at conferences; and 7) a journal article about the development of the OA guidebook. 1 Conclusions PPI provided a meaningful contribution to shaping, delivering and evaluating a complex research programme. The final programme report to the funder (NIHR) has a dedicated section on the contribution of PPI to the development, design, conduct and implementation of the research. References Grime and Dudley. Health Expect. 2014 Apr;17(2):164-73. Acknowledgements This presentation presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number: RP-PG-0407-10386). Disclosure of Interest None declared

Background The terms and acronyms used in research can be confusing to lay people. This volunteer led project aimed to produce a plain language glossary of research terms and acronyms to assist the involvement of Research User Group members in research studies at a primary care research centre. Objectives To highlight how high quality glossaries for researchers and lay members can be produced by lay volunteers. Methods A member of the Research User Group (RUG) volunteered to lead the task of compiling a glossary of research terms and acronyms used in research protocols in studies of an Institute of Primary Care. The volunteer generated a list of research terms by a search of study information, discussion with RUG members and study coordinators. With support from the Institute9s Patient and Public Involvement team, lay definitions for the research terms were written by the volunteer using a combination of available resources (COCHRANE 1 , OMERACT 2 , INVOLVE 3 ), web-based searches and creative thinking, and then compiled into a glossary. The glossaries were peer reviewed by Research User Group members and researchers. A glossary of generic research terms and individual study-specific glossaries were created Results A generic glossary and four study-specific glossaries were produced. The generic glossary contains lay definitions for 332 research terms. The RUG members and researchers described the glossaries as a useful reference to support peoples understanding of the research process. The glossaries are now being widely circulated throughout the Research Institute and externally. The volunteer described the work as a tedious process at times but he has developed new skills and obtained great pride and satisfaction at completing the task. Conclusions Research glossaries developed by lay volunteers can help Research User Groups better understand and support their contribution to the research process. The glossaries could be translated and made accessible in different formats. As well as sharing their experiences of a particular life experience, volunteers have many other skills and capabilities that can be harnessed to the benefit to the individual and the research team. References The Cochrane Collaboration. Glossary of Cochrane terms. http://www.cochrane.org/glossary OMERACT Patient Research Partners Group. OMERACT glossary for patient research partners. 2012. http://www.omeract.org/pdf/OMERACT11%20Glossary.pdf INVOLVE. Jargon Buster. http://www.invo.org.uk/resource-centre/useful-information/jargon-buster/ Acknowledgements We like to convey our gratitude to the Institute9s RUG members for their support and help to develop the research glossaries Disclosure of Interest None declared

Background People with osteoarthritis (OA) desire high quality care, support and information about OA. Quality indicators (QI) can set minimum standards of quality of care for OA. Following a literature review, researchers in the Musculoskeletal Pain in Ullensaker (MUST) study, Norway developed a patient questionnaire about the OA QIs reported by patients. This was reviewed by patient research partners and validated for Norwegian OA care (Osteras et al, 2013). At the same time, the Managing Osteoarthritis in Consultations (MOSAICS) study involved research users to develop a patient questionnaire about the OA QIs reported by patients for UK primary care. Objectives We report on 1) the development of the MOSAICS OA-QI questionnaire; and 2) the comparison of the content of both OA-QI questionnaires. Methods Members of an OA patient and public involvement (PPI) group at Keele University, UK were invited to meetings with researchers. From a list of OA-QIs considered suitable for primary care, which were identified by a systematic review (Edwards et al, 2013), PPI members discussed how relevant the OA-QIs are from a patient perspective and then each person chose their five most important. PPI members suggested wording and ways of answering for a draft MOSAICS OA-QI questionnaire. The PPI group then commented on the draft questionnaire and how it compared with the MUST OA-QI questionnaire. Results PPI members (5 males, 7 females; aged 52-80 years) attended up to five meetings. Of 30 QIs initially identified, PPI members chose 20 as important for inclusion in a questionnaire. These covered pain self-management, medication use and side effects, daily activities, information about OA, quality of life and level of support. PPI members then helped to develop the wording of 14 items and ways of answering the items for the MOSAICS OA-QI questionnaire (some similar QIs were combined into single items). In comparison, the MUST QI questionnaire contained 17 items, but the ways of answering were the same. PPI members commented that both questionnaires contained the same or similar QIs. They felt that all of the MUST OA-QIs were important, though some of the translated Norwegian words were not suitable for OA patients in the UK. Conclusions PPI members and researchers can agree on the important QIs for OA care. The UK PPI group produced quality indicators consistent with those chosen by researchers for Norwegian OA care. PPI in MOSAICS ensured that the OA-QIs were relevant and refined the item wording. The development of two OA-QIs questionnaires was a coincidence but it has provided a unique opportunity to compare QIs across European countries. This allows researchers to test how commonplace OA-QIs are in different populations and future research has been funded by EULAR to investigate this. References Edwards J et al. Quality indicators for the primary care of osteoarthritis: a systematic review. Ann of the Rheum Dis 2013 (Published online first: 27 Nov 2013) Osteras N et al. Patient-reported quality of care for osteoarthritis: development and testing of the osteoarthritis quality indicator questionnaire. Arthritis Care Res 2013;65:1043-51 Acknowledgements This presentation presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number: RP-PG-0407-10386). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.2115

In the Fourth Open Hypermedia Systems workshop, the authors presented scenarios and a set of prototype tools to explore the application of open hypermedia principles, including content-based navigation, to temporal media. The purpose of the current paper is to provide an update on this work, focussing in particular on the ongoing work on content based navigation of music. We describe the development of a system which classifies the musical parts in MIDI files. This classification is then used to enhance content based retrieval and navigation of music. The effectiveness of the various approaches to classification is evaluated with respect to both stand-alone performance and when used in conjunction with a contour database.

We describe the integration of content based techniques for navigation of musical information (primarily in MIDI representation) into a multiagent system for distributed information management. This exercise illustrates the application of the multiagent approach to engineering distributed multimedia information systems and raises some design issues.

The use of pitch contours is an established technique for content-based retrieval of music ('query by humming'). This paper presents a system which employs pitch contours to support content-based navigation around a body of multimedia documents including MIDI and digital audio files. The system adopts an open hypermedia model, enabling the user to find available hypermedia links from an arbitrary fragment in a piece of music, based on the content or location of that fragment. The design of the tools, contour database and the contour-matching algorithms are discussed.

We describe a set of tools to support navigational hypermedia linking within audio ('branching audio') and between media types including audio. We have adopted an open hypermedia approach, with a component-based architecture, and aim to be compliant with the emerging Open Hypermedia Protocol (OHP). Content-based navigation is supported and we have focused on speech and musical content for our case studies. Although our investigation concentrates on audio, many of the techniques are generic and therefore applicable to other temporal media.