Patient and public involvement mobile workshops - convenient involvement for the un-usual suspects

Background Patient and public involvement in research is a quickly-evolving area, with investigators developing new approaches in recent years. One concern about patient and public involvement is that it only appeals to certain individuals. When designing research into online GP services – a topic relevant to the general population – we recognised the importance of involving members of the public with a broad range of backgrounds who may not have the time, resources and inclination to volunteer normally. Methods We devised a strategy that aimed to involve members of the public from varied backgrounds, who would not typically be able to be involved. We ran a series of one-off mobile workshops at existing organisations where potential volunteers were already in situ. The workshops were kept short, making them convenient and easily accessible. Volunteers were also paid, to ensure taking part was appealing. Results We ran a series of 4 workshops involving 26 members of the public with office workers, supermarket staff, gym members (and their friends) and parents attending a toddler group. Overall the workshops were successful, as they enabled us to gain varied perspectives from volunteers with a broad range of backgrounds, many of whom had not previously been involved in research. A key challenge was making initial contact with members of approached organisations. This indicates that it may be beneficial to consider how to make the workshops appealing, not just onan individual level, but at an organisational level too. A carefully planned design worked as it enabled large amounts of input in a limited amount of time, apart from one workshop (the parent group) due to practical reasons. This highlighted some limitations of this approach that could be addressed by adapting the workshop design, according to the organisation with which they are being run. Conclusion Running one-off mobile workshops at already existing organisations allowed us to involve members of the public from a broad range of backgrounds, who would not typically volunteer to be involved in research. This was particularly suitable as the topic we were designing research for – booking GP appointments – is relevant to the general public

A meta-ethnography of the factors that shape link workers’ experiences of social prescribing

Background: Social prescribing is gaining traction internationally. It is an approach which seeks to address non-medical and health-related social needs through taking a holistic person-centred and community-based approach. This involves connecting people with and supporting them to access groups and organisations within their local communities. It is hoped that social prescribing might improve health inequities and reduce reliance on healthcare services. In the UK, social prescribing link workers have become core parts of primary care teams. Despite growing literature on the implementation of social prescribing, to date there has been no synthesis that develops a theoretical understanding of the factors that shape link workers’ experiences of their role. Methods: We undertook a meta-ethnographic evidence synthesis of qualitative literature to develop a novel conceptual framework that explains how link workers experience their roles. We identified studies using a systematic search of key databases, Google alerts, and through scanning reference lists of included studies. We followed the eMERGe guidance when conducting and reporting this meta-ethnography. Results: Our synthesis included 21 studies and developed a “line of argument” or overarching conceptual framework which highlighted inherent and interacting tensions present at each of the levels that social prescribing operates. These tensions may arise from a mismatch between the policy logic of social prescribing and the material and structural reality, shaped by social, political, and economic forces, into which it is being implemented. Conclusions: The tensions highlighted in our review shape link workers’ experiences of their role. They may call into question the sustainability of social prescribing and the link worker role as currently implemented, as well as their ability to deliver desired outcomes such as reducing health inequities or healthcare service utilisation. Greater consideration should be given to how the link worker role is defined, deployed, and trained. Furthermore, thought should be given to ensuring that the infrastructure into which social prescribing is being implemented is sufficient to meet needs. Should social prescribing seek to improve outcomes for those experiencing social and economic disadvantage, it may be necessary for social prescribing models to allow for more intensive and longer-term modes of support

Exploring the perceived usefulness and ease of use of a personalized web-based resource (care companion) to support informal caring : qualitative descriptive study

Informal carers play an increasingly vital role in supporting the older population and the sustainability of health care systems. Care Companion is a theory-based and coproduced Web-based intervention to help support informal carers' resilience. It aims to provide personalized access to information and resources that are responsive to individuals' caring needs and responsibilities and thereby reduce the burdens associated with caregiving roles. Following the development of a prototype, it was necessary to undertake user acceptability testing to assess its suitability for wider implementation. This study aimed to undertake user acceptance testing to investigate the perceived usefulness and ease of use of Care Companion. The key objectives were to (1) explore how potential and actual users perceived its usefulness, (2) explore the barriers and facilitators to its uptake and use and (3) gather suggestions to inform plans for an area-wide implementation. We conducted user acceptance testing underpinned by principles of rapid appraisal using a qualitative descriptive approach. Focus groups, observations, and semistructured interviews were used in two phases of data collection. Participants were adult carers who were recruited through local support groups. Within the first phase, think-aloud interviews and observations were undertaken while the carers familiarized themselves with and navigated through the platform. In the second phase, focus group discussions were undertaken. Interested participants were then invited to trial Care Companion for up to 4 weeks and were followed up through semistructured telephone interviews exploring their experiences of using the platform. Thematic analysis was applied to the data, and a coding framework was developed iteratively with each phase of the study, informing subsequent phases of data collection and analysis. Overall, Care Companion was perceived to be a useful tool to support caregiving activities. The key themes were related to its appearance and ease of use, the profile setup and log-in process, concerns related to the safety and confidentiality of personal information, potential barriers to use and uptake and suggestions for overcoming them, and suggestions for improving Care Companion. More specifically, these related to the need for personalized resources aimed specifically at the carers (instead of care recipients), the benefits of incorporating a Web-based journal, the importance of providing transparency about security and data usage, minimizing barriers to initial registration, offering demonstrations to support uptake by people with low technological literacy, and the need to develop a culturally sensitive approach. The findings identified ways of improving the ease of use and usefulness of Care Companion and demonstrated the importance of undertaking detailed user acceptance testing when developing an intervention for a diverse population, such as informal carers of older people. These findings have informed the further refinement of Care Companion and the strategy for its full implementation. [Abstract copyright: ©Amadea Turk, Emma Fairclough, Gillian Grason Smith, Benjamin Lond, Veronica Nanton, Jeremy Dale. Originally published in JMIR Aging (http://aging.jmir.org), 20.08.2019.

Exploring UK doctors’ attitudes towards online patient feedback : thematic analysis of survey data

Introduction: Patients are increasingly using online platforms to give feedback about their health-care experiences. Online feedback has been proposed as a way to drive transformative change in the health service through informing choice and improving quality. Attitudes held by health-care professionals influence the uptake of new technologies. Understanding these attitudes is essential in exploring the potential of online patient feedback as a standard feedback mechanism. This study explores the content of free-text comments left by doctors responding to a survey with the aim of understanding their attitudes towards online feedback. Methods: A cross-sectional online questionnaire was completed by 1001 UK primary and secondary-care doctors. Doctors were given the opportunity to leave a free-text comment about online patient feedback. Doctors’ attitudes towards online patient feedback were identified and explored using thematic analysis. Descriptive statistics and chi-square tests were used to examine demographic differences between those doctors who left a comment and those who did not. Results: Thematic analysis identified five key interrelated themes: anonymity, confidentiality, representativeness, moderation/regulation of online feedback and platform type. The characteristics of those leaving a comment very closely matched those of the entire survey sample. Conclusion: Across the comments, the most prominent finding was a general scepticism and caution towards online feedback, with most of the key themes relating to the perceived limitations and challenges. Further work exploring ways of addressing and verifying online comments without breaching confidentiality could provide valuable information to health systems seeking to drive improvement through patient online feedback

Broadening diversity through creative involvement to identify research priorities

Background Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We tried using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods We contacted existing groups and organisations to reach people not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with a mental and physical health condition, c) of South Asian heritage. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss these pieces of art and the processes involved in their generation. Results From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) information needs and anxiety/guilt around accessing care for people with physical and mental health conditions, c) supporting discussion of women’s health issues in South Asian communities. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork helped them to feel that their voice had been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and producing a study. Conclusions We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future PPI, building on what we have learnt from the project described in this paper

Correction: Optimising a person-centred approach to stopping medicines in older people with multimorbidity and polypharmacy using the DExTruS framework: a realist review (BMC Medicine, (2022), 20, 1, (297), 10.1186/s12916-022-02475-1)

The original article [1] contained an error in the spelling of co-author, Michelle Maden’s name which has since been corrected

The consequences of micro-discretions and boundaries in the social prescribing link worker role in England: a realist evaluation

Background: Social prescribing addresses non-medical factors affecting health and well-being. Link workers arekey to its delivery by connecting people to relevant support, often in the voluntary, community and social enterprisesector. Funding from the National Health Service means that link workers are becoming a common part of primarycare in England.Objective: To explore and understand the implementation of link workers in primary care in England.Design: A realist evaluation addressed the question – When implementing link workers in primary care to sustainoutcomes – what works, for whom, why and in what circumstances?Setting: Link workers and staff associated with seven primary care sites across England.Methods: Researchers spent 3 weeks with each link worker, going to meetings with them, watching them interactwith patients, with healthcare staff and with voluntary, community and social enterprise organisations. In addition,interviews were conducted with 61 patients and 93 professionals (voluntary, community and social enterpriserepresentatives and healthcare staff, including link workers). Follow-up interviews were conducted with 41 patientsand with link workers 9–12 months later. Data were coded and developed into statements to identify how contextaround the link worker triggers mechanisms that lead to intended and unintended outcomes.Results: We found that link workers exercise micro-discretions in their role – actions and advice-giving based onpersonal judgement of a situation, which may not always reflect explicit guidance or protocols. Our analysis highlightedthat micro-discretions engender positive connections (with patients, healthcare staff, the voluntary, community andsocial enterprise sector) and promote buy-in to the link worker role in primary care. Micro-discretions supporteddelivery of person-centred care and enhanced job satisfaction. Data also highlighted that lack of boundaries couldplace link workers at risk of overstepping their remit.Limitations: Our research focused on link workers attached to primary care; findings may not be applicable tothose working in other settings. Data were collected around seven link worker cases, who were selected purposivelyfor variation in terms of geographical spread and how/by whom link workers were employed. However, these linkworkers were predominately white females.Conclusions: Enabling link workers to exercise micro-discretions allows for responsiveness to individual patientneeds but can result in uncertainty and to link workers feeling overstretched

“She’s been a rock”: the function and importance of ‘holding’ by social prescribing link workers in primary care in England: findings from a realist evaluation.

Social prescribing link workers are new roles in English primary care. One of their intended functions is to address the increasing number of patients with conditions influenced by the wider, social determinants of health. Their main purpose is to connect people to community resources to meet their non-medical needs. However, our research reveals that link workers provide not only connections, but also what we have described as ‘holding’ for patients who have complex needs, who lack informal networks of support or who are waiting to access services. We explore the concept of holding, its meaning and significance in this context and its consequences.As part of a realist evaluation, we observed seven link workers in GP practices in England during focussed ethnographies over a three-week period. We took field notes and interviewed 61 patients and 93 healthcare professionals. Nine to twelve months later we carried out follow-up interviews with 41 patients, seven link workers and a link worker manager. We identified four functions of holding: supporting patients waiting for services, sustaining patients as they prepare for change, reducing the emotional burden of primary healthcare professionals, and bearing witness to patients’ distress. Holding appears to be a vital, but often overlooked aspect of social prescribing. Patients benefit from having a reliable and consistent person to support their emotional needs. However, similar to the impact of holding on other primary care professionals, there are unintended consequences: some link workers exceed their capacity, become over-burdened, experience burnout, and leave their job. Recognizing the importance of holding and understanding its role in link workers' primary care responsibilities are critical. If holding work is accepted as a role for link workers, providing training and support for them should be prioritized to ensure successful implementation and positive outcomes for patients, link workers and primary healthcare

Report: Deprescribing medicines in older people living with multimorbidity and polypharmacy: the TAILOR evidence synthesis

Background: Tackling problematic polypharmacy requires tailoring the use of medicines to individual needs and circumstances. This may involve stopping medicines (deprescribing) but patients and clinicians report uncertainty on how best to do this. The TAILOR medication synthesis sought to help understand how best to support deprescribing in older people living with multimorbidity and polypharmacy. Objectives: We identified two research questions: (1) what evidence exists to support the safe, effective and acceptable stopping of medication in this patient group, and (2) how, for whom and in what contexts can safe and effective tailoring of clinical decisions related to medication use work to produce desired outcomes? We thus described three objectives: (1) to undertake a robust scoping review of the literature on stopping medicines in this group to describe what is being done, where and for what effect; (2) to undertake a realist synthesis review to construct a programme theory that describes ‘best practice’ and helps explain the heterogeneity of deprescribing approaches; and (3) to translate findings into resources to support tailored prescribing in clinical practice. Data sources: Experienced information specialists conducted comprehensive searches in MEDLINE, Cumulative Index to Nursing and Allied Health Literature,Web of Science, EMBASE, The Cochrane Library (Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials), Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports, Google (Google Inc., Mountain View, CA, USA) and Google Scholar (targeted searches). Review methods: The scoping review followed the five steps described by the Joanna Briggs Institute methodology for conducting a scoping review.The realist review followed the methodological and publication standards for realist reviews described by the Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) group. Patient and public involvement partners ensured that our analysis retained a patient-centred focus. Results: Our scoping review identified 9528 abstracts: 8847 were removed at screening and 662 were removed at full-text review. This left 20 studies (published between 2009 and 2020) that examined the effectiveness, safety and acceptability of deprescribing in adults (aged ≥ 50 years) with polypharmacy (five or more prescribed medications) and multimorbidity (two or more conditions). Our analysis revealed that deprescribing under research conditions mapped well to expert guidance on the steps needed for good clinical practice. Our findings offer evidence-informed support to clinicians regarding the safety, clinician acceptability and potential effectiveness of clinical decision-making that demonstrates a structured approach to deprescribing decisions. Our realist review identified 2602 studies with 119 included in the final analysis. The analysis outlined 34 context–mechanism–outcome configurations describing the knowledge work of tailored prescribing under eight headings related to organisational, health-care professional and patient factors, and interventions to improve deprescribing. We conclude that robust tailored deprescribing requires attention to providing an enabling infrastructure, access to data, tailored explanations and trust. Limitations: Strict application of our definition of multimorbidity during the scoping review may have had an impact on the relevance of the review to clinical practice. The realist review was limited by the data (evidence) available. Conclusions: Our combined reviews recognise deprescribing as a complex intervention and provide support for the safety of structured approaches to deprescribing, but also highlight the need to integrate patient-centred and contextual factors into best practice models

Deprescribing medicines in older people living with multimorbidity and polypharmacy: the TAILOR evidence synthesis

Background Tackling problematic polypharmacy requires tailoring the use of medicines to individual needs and circumstances. This may involve stopping medicines (deprescribing) but patients and clinicians report uncertainty on how best to do this. The TAILOR medication synthesis sought to help understand how best to support deprescribing in older people living with multimorbidity and polypharmacy. Objectives We identified two research questions: (1) what evidence exists to support the safe, effective and acceptable stopping of medication in this patient group, and (2) how, for whom and in what contexts can safe and effective tailoring of clinical decisions related to medication use work to produce desired outcomes? We thus described three objectives: (1) to undertake a robust scoping review of the literature on stopping medicines in this group to describe what is being done, where and for what effect; (2) to undertake a realist synthesis review to construct a programme theory that describes ‘best practice’ and helps explain the heterogeneity of deprescribing approaches; and (3) to translate findings into resources to support tailored prescribing in clinical practice. Data sources Experienced information specialists conducted comprehensive searches in MEDLINE, Cumulative Index to Nursing and Allied Health Literature, Web of Science, EMBASE, The Cochrane Library (Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials), Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports, Google (Google Inc., Mountain View, CA, USA) and Google Scholar (targeted searches). Review methods The scoping review followed the five steps described by the Joanna Briggs Institute methodology for conducting a scoping review. The realist review followed the methodological and publication standards for realist reviews described by the Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) group. Patient and public involvement partners ensured that our analysis retained a patient-centred focus. Results Our scoping review identified 9528 abstracts: 8847 were removed at screening and 662 were removed at full-text review. This left 20 studies (published between 2009 and 2020) that examined the effectiveness, safety and acceptability of deprescribing in adults (aged ≥ 50 years) with polypharmacy (five or more prescribed medications) and multimorbidity (two or more conditions). Our analysis revealed that deprescribing under research conditions mapped well to expert guidance on the steps needed for good clinical practice. Our findings offer evidence-informed support to clinicians regarding the safety, clinician acceptability and potential effectiveness of clinical decision-making that demonstrates a structured approach to deprescribing decisions. Our realist review identified 2602 studies with 119 included in the final analysis. The analysis outlined 34 context–mechanism–outcome configurations describing the knowledge work of tailored prescribing under eight headings related to organisational, health-care professional and patient factors, and interventions to improve deprescribing. We conclude that robust tailored deprescribing requires attention to providing an enabling infrastructure, access to data, tailored explanations and trust. Limitations Strict application of our definition of multimorbidity during the scoping review may have had an impact on the relevance of the review to clinical practice. The realist review was limited by the data (evidence) available. Conclusions Our combined reviews recognise deprescribing as a complex intervention and provide support for the safety of structured approaches to deprescribing, but also highlight the need to integrate patient-centred and contextual factors into best practice models. Future work The TAILOR study has informed new funded research tackling deprescribing in sleep management, and professional education. Further research is being developed to implement tailored prescribing into routine primary care practice. Study registration This study is registered as PROSPERO CRD42018107544 and PROSPERO CRD42018104176. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 26, No. 32. See the NIHR Journals Library website for further project information