Leading co-production in five UK collaborative research partnerships (2008-2018): responses to four tensions from senior leaders using auto-ethnography.

BACKGROUND: Despite growing enthusiasm for co-production in healthcare services and research, research on co-production practices is lacking. Multiple frameworks, guidelines and principles are available but little empirical research is conducted on 'how to do' co-production of research to improve healthcare services. This paper brings together insights from UK-based collaborative research partnerships on leading co-production. Its aim is to inform practical guidance for new partnerships planning to facilitate the co-production of applied health research in the future. METHODS: Using an auto-ethnographic approach, experiential evidence was elicited through collective sense making from recorded conversations between the research team and senior leaders of five UK-based collaborative research partnerships. This approach applies a cultural analysis and interpretation of the leaders' behaviours, thoughts and experiences of co-production taking place in 2008-2018 and involving academics, health practitioners, policy makers and representatives of third sector organisations. RESULTS: The findings highlight a variety of practices across CLAHRCs, whereby the intersection between the senior leaders' vision and local organisational context in which co-production occurs largely determines the nature of co-production process and outcomes. We identified four tensions in doing co-production: (1) idealistic, tokenistic vs realistic narratives, (2) power differences and (lack of) reciprocity, (3) excluding vs including language and communication, (4) individual motivation vs structural issues. CONCLUSIONS: The tensions were productive in helping collaborative research partnerships to tailor co-production practices to their local needs and opportunities. Resulting variation in co-production practices across partnerships can therefore be seen as highly advantageous creative adaptation, which makes us question the utility of seeking a unified 'gold standard' of co-production. Strategic leadership is an important starting point for finding context-tailored solutions; however, development of more distributed forms of leadership over time is needed to facilitate co-production practices between partners. Facilitating structures for co-production can enable power sharing and boost capacity and capability building, resulting in more inclusive language and communication and, ultimately, more credible practices of co-production in research. We provide recommendations for creating more realistic narratives around co-production and facilitating power sharing between partners.

Correction: Homes of Stroke Survivors Are a Challenging Environment for Rehabilitation Technologies.

[This corrects the article DOI: 10.2196/12029.].

Homes of Stroke Survivors Are a Challenging Environment for Rehabilitation Technologies.

The design of digital technologies that support poststroke rehabilitation at home has been a topic of research for some time. If technology is to have a large-scale impact on rehabilitation practice, then we need to understand how to create technologies that are appropriate for the domestic environment and for the needs and motivations of those living there. This paper reflects on the research conducted in the Motivating Mobility project (UK Engineering and Physical Science Research Council: EP/F00382X/1). We conducted sensitizing studies to develop a foundational understanding of the homes of stroke survivors, participatory design sessions situated in the home, and experimental deployments of prototype rehabilitation technologies. We identified four challenges specific to the homes of stroke survivors and relevant to the deployment of rehabilitation technologies: identifying a location for rehabilitation technology, negotiating social relationships present in the home, avoiding additional stress in households at risk of existential stress, and providing for patient safety. We conclude that skilled workers may be needed to enable successful technology deployment, systematizing the mapping of the home may be beneficial, and education is a viable focus for rehabilitation technologies.

Exploring the acceptability and usability of a novel social innovation to encourage physical activity: The iStep prototype.

This study explored the acceptability and usability of the iStep prototype a novel social innovation to encourage intergenerational physical activity (PA) to help reduce obesity levels in older age. Obesity is a major public health issue and physical inactivity is one of the many factors that influence this, especially in childhood and later life. iStep (a pedometer and interactive website) sought to increase PA levels across the life course through intergenerational partnerships participating in walking challenges together. This was a qualitative mixed methods study involving 130 participants from two different settings. Pupils and teachers from a local secondary school (n = 120) tested the iStep prototype over two separate 2-week periods. Pupil and teacher partnerships engaged in a walking challenge using pedometers and the website platform. In addition, 10 retirement age women were involved in a modified co-operative evaluation of the prototype. Two focus groups with pupils (n = 9 and 20), semistructured interviews with teachers (n = 5), and one dyadic interview (pupil/teacher) were undertaken. Data were analysed using an iterative thematic approach. Five themes were identified: perceptions of the technology, attitudes towards the walking challenge, attitudes to the intergenerational partnership, competition versus collaboration and promoting PA. The pedometer was a useful motivational tool which raised awareness of PA levels. The website was thought to be simple and easy to use. Walking was deemed inclusive and accessible to all age groups and setting a target goal was considered beneficial. Engaging in PA with a partner was regarded as a good way to provide support and encouragement. Overall, this early prototype evaluation showed that iStep has potential to be an innovative and engaging way to encourage increased PA across generations. It may positively contribute towards reducing obesity levels in older age but outcomes that effectively measure this need to be incorporated in any future iStep testing.

Assessing Gait Impairments Based on Auto-Encoded Patterns of Mahalanobis Distances from Consecutive Steps.

Insole pressure sensors capture the force distribution patterns during the stance phase while walking. By comparing patterns obtained from healthy individuals to patients suffering different medical conditions based on a given similarity measure, automatic impairment indexes can be computed in order to help in applications such as rehabilitation. This paper uses the data sensed from insole pressure sensors for a group of healthy controls to train an auto-encoder using patterns of stochastic distances in series of consecutive steps while walking at normal speeds. Two experiment groups are compared to the healthy control group: a group of patients suffering knee pain and a group of post-stroke survivors. The Mahalanobis distance is computed for every single step by each participant compared to the entire dataset sensed from healthy controls. The computed distances for consecutive steps are fed into the previously trained autoencoder and the average error is used to assess how close the walking segment is to the autogenerated model from healthy controls. The results show that automatic distortion indexes can be used to assess each participant as compared to normal patterns computed from healthy controls. The stochastic distances observed for the group of stroke survivors are bigger than those for the people with knee pain.

Using technology to improve access to specialist care in amyotrophic lateral sclerosis: A systematic review.

Our objective was to review the evidence for using technology to improve access to specialist care for patients with amyotrophic lateral sclerosis (ALS) and their carers. Medline, Google Scholar and the Cochrane library were searched for articles describing technology that enabled clinical care of patients with ALS or their carers where the patient/carer and clinician were not in the same location. Two applications were identified: telemedicine to facilitate video conferencing as an alternative to outpatient consultations and telehealth monitoring for patients with respiratory failure. One randomized controlled trial using telehealth in patients with respiratory failure including 22 patients with ALS was identified. While rates of hospitalization were reduced, overall mortality was unchanged and there were too few patients with ALS in the study to detect significant benefit. In conclusion, there is limited evidence to support the use of telemedicine or telehealth in the care of patients with ALS. Future research needs to develop an understanding of the key beneficial aspects of the traditional specialist ALS service and how these factors could be delivered using technology. Successful evaluation and implementation of technologies to facilitate access to specialist care will only be possible if all the relevant impacts of an intervention are understood and measured.

Optimal fall indicators for slip induced falls on a cross-slope.

Slip-induced falls are among the most common cause of major occupational injuries in the UK as well as being a major public health concern in the elderly population. This study aimed to determine the optimal fall indicators for fall detection models which could be used to reduce the detrimental consequences of falls. A total of 264 kinematic variables covering three-dimensional full body model translation and rotational measures were analysed during normal walking, successful recovery from slips and falls on a cross-slope. Large effect sizes were found for three kinematic variables which were able to distinguish falls from normal walking and successful recovery. Further work should consider other types of daily living activities as results show that the optimal kinematic fall indicators can vary considerably between movement types. Practitioner Summary: Fall detection models are used to minimise the adverse consequences of slip-induced falls, a major public health concern. Optimal fall indicators were derived from a comprehensive set of kinematic variables for slips on a cross-slope. Results suggest robust detection of falls is possible on a cross-slope but may be more difficult than level walking.

A self-managed single exercise programme versus usual physiotherapy treatment for rotator cuff tendinopathy: a randomised controlled trial (the SELF study).

OBJECTIVES: To evaluate the clinical effectiveness of a self-managed single exercise programme versus usual physiotherapy treatment for rotator cuff tendinopathy. DESIGN: Multi-centre pragmatic unblinded parallel group randomised controlled trial. SETTING: UK National Health Service. PARTICIPANTS: Patients with a clinical diagnosis of rotator cuff tendinopathy. INTERVENTIONS: The intervention was a programme of self-managed exercise prescribed by a physiotherapist in relation to the most symptomatic shoulder movement. The control group received usual physiotherapy treatment. MAIN OUTCOME MEASURES: The primary outcome measure was the Shoulder Pain & Disability Index (SPADI) at three months. Secondary outcomes included the SPADI at six and twelve months. RESULTS: A total of 86 patients (self-managed loaded exercise n=42; usual physiotherapy n=44) were randomised. Twenty-six patients were excluded from the analysis because of lack of primary outcome data at the 3 months follow-up, leaving 60 (n=27; n=33) patients for intention to treat analysis. For the primary outcome, the mean SPADI score at three months was 32.4 (SD 20.2) for the self-managed group, and 30.7 (SD 19.7) for the usual physiotherapy treatment group; mean difference adjusted for baseline score: 3.2 (95% Confidence interval -6.0 to +12.4 P = 0.49).By six and twelve months there remained no significant difference between the groups. CONCLUSIONS: This study does not provide sufficient evidence of superiority of one intervention over the other in the short-, mid- or long-term and hence a self-management programme based around a single exercise appears comparable to usual physiotherapy treatment.

Knowledge Exchange: selecting research opportunities through estimation.

A systematic way to select new ideas for research and development between two organisations is reported. It was applied to ideas that were generated from acute clinical settings by Occupational Therapists with a view to collaborate with nearby university academics from many disciplines. The process, assessment factors, use of ordinal scales with thresholding and an arbitrary formula are described. Challenges in the approach are discussed. Suitability for use by others in the AT field, other care related or even very different contexts is noted with some adaption and caveats.

Understanding the barriers and enablers to implementation of a self-managed exercise intervention: a qualitative study.

BACKGROUND: Despite a proliferation of research evidence, there remains a 'gap' between what this evidence suggests and what happens in clinical practice. One reason why physiotherapists might not implement research evidence is because the findings do not align with their current practice preferences. OBJECTIVES: While conducting a multicentre RCT we aimed to explore possible implementation barriers and facilitators with regard to the intervention under evaluation; a self-managed loaded exercise programme for rotator cuff tendinopathy. DESIGN: A qualitative study within the framework of a mixed methods design. Data was collected using individual semi-structured interviews and analysed using the framework method. SETTING: Three NHS physiotherapy departments. PARTICIPANTS: Thirteen physiotherapists. RESULTS: Six themes were generated: (1) the physiotherapists preferred therapeutic option; (2) the role of the physiotherapist; (3) attributes of the intervention; (4) attitude to symptom response; (5) response to therapy, and (6) continuing professional development. Differences between the preferred therapeutic approach of the physiotherapists and the self-managed exercise intervention were apparent; particularly in relation to the type and number of exercises, the use of manual therapy and the extent of loading. The physiotherapists recognised their role as knowledge translators but certain attributes of the intervention appeared to serve as both a barrier and facilitator; particularly the simplicity. Opinion regarding the optimal symptom response during exercise prescription also differed. CONCLUSION: Some relevant and important physiotherapist related barriers and facilitators concerning implementation of research findings have been identified. The influence of these factors needs to be recognised and considered.

Patients with rotator cuff tendinopathy can successfully self-manage, but with certain caveats: a qualitative study.

OBJECTIVES: Evidence has emerged supporting the value of loaded exercises for rotator cuff tendinopathy but there are barriers that might prevent implementation of this intervention in the real-world. The purpose of this study was to explore these potential barriers with participants involved in a pilot randomised controlled trial (RCT) investigating a self-managed loaded exercise intervention. DESIGN: A qualitative study within the framework of a mixed methods design. Data were collected using individual interviews and analysed using the framework method. SETTING: One private physiotherapy clinic in northern England. PARTICIPANTS: Six patients and two physiotherapists were purposively sampled from those allocated to the self-managed exercise group within the RCT. RESULTS: Three themes were generated: (1) Expectations and preferences, (2) characteristics of an unsuccessful outcome, (3) characteristics of a successful outcome. Most patients expressed expectations contrary to the philosophy of a self-managed approach. But this did not serve as a barrier when the intervention was offered within a positive and supporting environment where patients understood the reasons for undertaking the exercise, effectively self-monitored and engaged with pro-active follow-up. An early and appreciable response to therapy was also a key factor influencing continuing engagement with the exercise programme. CONCLUSION: With certain caveats including the need to recognise and respond to individual characteristics, implement effective knowledge translation strategies and the need to engage with appropriately timed pro-active follow-up, the potential to implement programmes of self-managed loaded exercise for patients with rotator cuff tendinopathy in the real-world and in further research studies appears feasible but challenging.

Self-managed loaded exercise versus usual physiotherapy treatment for rotator cuff tendinopathy: a pilot randomised controlled trial.

OBJECTIVES: Rotator cuff tendinopathy is a common source of shoulder pain characterised by persistent and/or recurrent problems for a proportion of sufferers. The aim of this study was to pilot the methods proposed to conduct a substantive study to evaluate the effectiveness of a self-managed loaded exercise programme versus usual physiotherapy treatment for rotator cuff tendinopathy. DESIGN: A single-centre pragmatic unblinded parallel group pilot randomised controlled trial. SETTING: One private physiotherapy clinic, northern England. PARTICIPANTS: Twenty-four participants with rotator cuff tendinopathy. INTERVENTIONS: The intervention was a programme of self-managed loaded exercise. The control group received usual physiotherapy treatment. MAIN OUTCOMES: Baseline assessment comprised the Shoulder Pain and Disability Index (SPADI) and the Short-Form 36, repeated three months post randomisation. RESULTS: The recruitment target was met and the majority of participants (98%) were willing to be randomised. 100% retention was attained with all participants completing the SPADI at three months. Exercise adherence rates were excellent (90%). The mean change in SPADI score was -23.7 (95% CI -14.4 to -33.3) points for the self-managed exercise group and -19.0 (95% CI -6.0 to -31.9) points for the usual physiotherapy treatment group. The difference in three month SPADI scores was 0.1 (95% CI -16.6 to 16.9) points in favour of the usual physiotherapy treatment group. CONCLUSIONS: In keeping with previous research which indicates the need for further evaluation of self-managed loaded exercise for rotator cuff tendinopathy, these methods and the preliminary evaluation of outcome offer a foundation and stimulus to conduct a substantive study.

Development of a self-managed loaded exercise programme for rotator cuff tendinopathy.

This paper describes a self-managed loaded exercise programme which has been designed to address the pain and disability associated with rotator cuff tendinopathy. The intervention has been developed with reference to current self-management theory and with reference to the emerging benefit of loaded exercise for tendinopathy. This self-managed loaded exercise programme is being evaluated within the mixed methods SELF study (ISRCTN 84709751) which includes a pragmatic randomised controlled trial conducted within the UK National Health Service.

The meaning of spasticity to people with multiple sclerosis: what can health professionals learn?

PURPOSE: Multiple sclerosis (MS) is the most common disabling neurological condition affecting young adults. One third of people on an American registry of people with MS (PWMS) reported having activities affected by spasticity. The psychosocial effects of spasticity in people with MS have been shown to be distressing and detrimental to emotional and social relationships when investigated from a psychology perspective. This paper investigates the impact of spasticity on the lives of people living with MS from a physiotherapeutic perspective. METHOD: This study involved 12 semi-structured interviews with individuals experiencing MS-related spasticity. Ten sets of data were analyzed following framework analysis principles. RESULTS: Results suggest spasticity effects life experience of these PWMS in diverse and complex ways. Physical, psychological and social consequences of spasticity are closely linked and can be far reaching. CONCLUSIONS: Therapists need to be aware of links between specific physical symptoms and their psychosocial consequences if they want to improve peoples' quality of life. This paper provides in depth qualitative research evidence for the complexity of the spasticity experience for each individual, strengthening the argument for a patient-centred approach to treatment. These results also support the case for targeted interventions with effectiveness recorded in a patient-centred way. IMPLICATIONS FOR REHABILITATION: • Spasticity is suggested here to affect the lives of individuals with multiple sclerosis in diverse and far reaching ways. Therapists need to investigate this fully in subjective assessment to impact on people's quality of life. • Direct links were identified between treatable physical symptoms and far reaching consequences of spasticity. • Knowledge about the complexity of the spasticity experience for each individual will allow therapists to target interventions appropriately and accurately record effectiveness in a patient-centred way.

A mixed methods study to evaluate the clinical and cost-effectiveness of a self-managed exercise programme versus usual physiotherapy for chronic rotator cuff disorders: protocol for the SELF study.

BACKGROUND: Shoulder pain is the third most common reason for consultation with a physiotherapist and up to 26% of the general population might be expected to experience an episode at any one time. Disorders of the shoulder muscles and tendons (rotator cuff) are thought to be the commonest cause of this pain. The long-term outcome is frequently poor despite treatment. This means that many patients are exposed to more invasive treatment, e.g. surgery, and/or long-term pain and disability.Patients with this disorder typically receive a course of physiotherapy which might include a range of treatments. Specifically the value of exercise against gravity or resistance (loaded exercise) in the treatment of tendon disorders is promising but appears to be under-used. Loaded exercise in other areas of the body has been favourably evaluated but further investigation is needed to evaluate the impact of these exercises in the shoulder and particularly the role of home based or supervised exercise versus usual treatment requiring clinic attendance. METHODS/DESIGN: A single-centre pragmatic unblinded parallel group randomised controlled trial will evaluate the effectiveness of a self-managed loaded exercise programme versus usual clinic based physiotherapy. A total of 210 study participants with a primary complaint of shoulder pain suggestive of a rotator cuff disorder will be recruited from NHS physiotherapy waiting lists and allocated to receive a programme of self-managed exercise or usual physiotherapy using a process of block randomisation with sealed opaque envelopes. Baseline assessment for shoulder pain, function and quality of life will be undertaken with the Shoulder Pain & Disability Index, the Patient Specific Functional Scale and the SF-36. Follow-up evaluations will be completed at 3, 6 and 12 months by postal questionnaire. Both interventions will be delivered by NHS Physiotherapist's.An economic analysis will be conducted from an NHS and Personal Social Services perspective to evaluate cost-effectiveness and a qualitative investigation will be undertaken to develop greater understanding of the experience of undertaking or prescribing exercise as a self-managed therapy. TRIAL REGISTRATION NUMBER: ISRCTN84709751.

Smart self management: assistive technology to support people with chronic disease.

We have developed a personalised self management system to support self management of chronic conditions with support from health-care professionals. Accelerometers are used to measure gross levels of activity, for example walking around the house, and used to infer higher level activity states, such as standing, sitting and lying. A smart phone containing an accelerometer and a global positioning system (GPS) module can be used to monitor outdoor activity, providing both activity and location based information. Heart rate, blood pressure and weight are recorded and input to the system by the user. A decision support system (DSS) detects abnormal activity and distinguishes life style patterns. The DSS is used to assess the self management process, and automates feedback to the user, consistent with the achievement of their life goals. We have found that telecare and assistive technology is feasible to support self management for chronic conditions within the home and local community environments.

Telerehabilitation: enabling the remote delivery of healthcare, rehabilitation, and self management.

Telerehabilitation refers to the use of Information and Communication Technologies (ICT) to provide rehabilitation services to people remotely in their homes or other environments. By using ICT, client access to care can be improved and the reach of clinicians can extend beyond the physical walls of a traditional healthcare facility, thus expanding continuity of care to persons with disabling conditions. The concept of telecare, when telerehabilitation is used to deliver services to clients in their homes or other living environments, empowers and enables individuals to take control of the management of their medical needs and interventions by enabling personalized care, choice and personal control. A wide variety of assessment and treatment interventions can be delivered to clients using remote monitoring systems, robotic and virtual reality technologies, and synchronized collaboration with online material. This chapter will present a brief history of telerehabilitation and telecare and offer an overview of the technology used to provide remote rehabilitation services. Emphasis will be given to the importance of human factors and user-centered design in the planning, development, and implementation of telerehabilitation systems and programs. The issue of self-care in rehabilitation and self-management will be discussed along with the rationale for how telerehabilitation can be used to promote client self-care and self-management. Two case studies of real-world telerehabilitation systems will be given, with a focus on how they were planned and implemented so as to maximize their potential benefits. The chapter will close with a discussion of obstacles and challenges facing telerehabilitation and suggestions for ways to promote its growth in use and acceptance.