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

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

Optimising a person-centred approach to stopping medicines in older people with multimorbidity and polypharmacy using the DExTruS framework: a realist review

Background: Tackling problematic polypharmacy requires tailoring the use of medicines to individual circumstances and may involve the process of deprescribing. Deprescribing can cause anxiety and concern for clinicians and patients. Tailoring medication decisions often entails beyond protocol decision-making, a complex process involving emotional and cognitive work for healthcare professionals and patients. We undertook realist review to highlight and understand the interactions between different factors involved in deprescribing and to develop a final programme theory that identifies and explains components of good practice that support a person-centred approach to deprescribing in older patients with multimorbidity and polypharmacy. Methods: The realist approach involves identifying underlying causal mechanisms and exploring how, and under what conditions they work. We conducted a search of electronic databases which were supplemented by citation checking and consultation with stakeholders to identify other key documents. The review followed the key steps outlined by Pawson et al. and followed the RAMESES standards for realist syntheses. Results: We included 119 included documents from which data were extracted to produce context-mechanism-outcome configurations (CMOCs) and a final programme theory. Our programme theory recognises that deprescribing is a complex intervention influenced by a multitude of factors. The components of our final programme theory include the following: a supportive infrastructure that provides clear guidance around professional responsibilities and that enables multidisciplinary working and continuity of care, consistent access to high-quality relevant patient contextual data, the need to support the creation of a shared explanation and understanding of the meaning and purpose of medicines and a trial and learn approach that provides space for monitoring and continuity. These components may support the development of trust which may be key to managing the uncertainty and in turn optimise outcomes. These components are summarised in the novel DExTruS framework. Conclusion: Our findings recognise the complex interpretive practice and decision-making involved in medication management and identify key components needed to support best practice. Our findings have implications for how we design medication review consultations, professional training and for patient records/data management. Our review also highlights the role that trust plays both as a central element of tailored prescribing and a potential outcome of good practice in this area

Patient use of an online triage platform : a mixed-methods retrospective exploration in UK primary care

Background Recent years have seen the introduction of online triage allowing patients to describe their problem via an online form. Subsequently, a GP telephones the patient, conducting a telephone consultation or arranging a face-to-face consultation. Aim This study aimed to explore patterns-of-use and patients’ experiences of using an online triage system. Design and setting This retrospective study analysed routinely collected data (from all practices using the ‘askmyGP’ platform for the duration of the study period, 19 May 2017 to 31 July 2017), using both quantitative and qualitative approaches. Data originated from an online triaging platform used by patients in nine general practices across the UK. Method Data from 5447 patients were quantitatively analysed to describe characteristics of users, patterns-of-use, and reasons given by patients for using the platform. Free-text comments left by patients (n = 569) on their experience of use were qualitatively analysed. Results Highest levels of use were observed in females (65.5%, n = 3570) and those aged 25–34 years. Patterns of use were high between 0800 and 0959, and on Mondays and Tuesdays. Use outside of GP practice opening hours was low. Common reasons for using the platform were for medication-related enquiries, for administrative requests, and to report a specific symptom. Comments left by patients suggested advantages to using the platform, for example, convenience and the written format, but these did not extend to all users. Conclusion Patterns-of-use and patient types were in line with typical contacts to GP practices. Though the age of users was broad, highest levels of use were from younger patients. The perceived advantages to using online triage, such as convenience and ease of use, are often context dependent

Social prescribing in National Health Service primary care: what are the ethical considerations?

Policy Points Social prescribing is proposed as a way of improving patients’ health and well-being by attending to their non-clinical needs. This is done by connecting patients with community assets (typically voluntary or charitable organizations) that provide social and personal support. In the United Kingdom, social prescribing is used to improve patient well-being and reduce use of National Health Service resources. Although social prescribing schemes hold promise, evidence of their effects and effectiveness is sparse. As more information on social prescribing is gathered, it will be important to consider the associated ethical issues for patients, clinicians, link workers, and community assets

Online patient feedback as a measure of quality in primary care: a multimethod study using correlation and qualitative analysis

Objectives To ascertain the relationship between online patient feedback and the General Practice Patient Survey (GPPS) and the Friends and Family Test (FFT). To consider the potential benefit it may add by describing the content of public reviews found on NHS Choices for all general practices in one Clinical Commissioning Group in England.   Design Multimethod study using correlation and thematic analysis.   Setting 1396 public online reviews and ratings on NHS Choices for all General Practices (n=70) in Oxfordshire Clinical Commissioning Group in England.   Results Significant moderate correlations were found between the online patient feedback and the GPPS and the FFT. Three themes were developed through the qualitative analysis: (1) online feedback largely provides positive reinforcement for practice staff; (2) online feedback is used as a platform for suggesting service organisation and delivery improvements; (3) online feedback can be a source of insight into patients’ expectations of care. These themes illustrate the wide range of topics commented on by patients, including their medical care, relationships with various members of staff, practice facilities, amenities and services in primary care settings.   Conclusions This multimethod study demonstrates that online feedback found on NHS Choices is significantly correlated with established measures of quality in primary care. This suggests it has a potential use in understanding patient experience and satisfaction, and a potential use in quality improvement and patient safety. The qualitative analysis shows that this form of feedback contains helpful information about patients’ experiences of general practice that provide insight into issues of quality and patient safety relevant to primary care. Health providers should offer patients multiple ways of offering feedback, including online, and should have systems in place to respond to and act on this feedback