Patient influence on general practice service improvement decision making: a participatory research mixed-methods intervention study.

BACKGROUND: Health policy promotes patient participation in decision making about service organisation. In English general practice this happens through contractually required patient participation groups (PPGs). However, there are problems with the enactment of PPGs that have not been systematically addressed. AIM: To observe how a co-designed theory-informed intervention can increase representational legitimacy and facilitate power sharing to support PPGs to influence decision making about general practice service improvement. DESIGN AND SETTING: Participatory action research to implement the intervention in two general practices in the North of England was undertaken. The intervention combined two different participatory practices: partnership working involving externally facilitated meetings with PPG members and staff; and consultation with the wider patient population using a bespoke discrete choice experiment (DCE). METHOD: To illustrate decision making in PPGs, qualitative data are presented from participant observation notes and photographed visual data generated through participatory methods. The DCE results are summarised to illustrate how wider population priorities contributed to overall decision making. Observational data were thematically analysed using normalisation process theory with support from a multi-stakeholder co-research group. RESULTS: In both general practices, patients influenced decision making during PPG meetings and through the DCE, resulting in bespoke patient-centred action plans for service improvement. Power asymmetries were addressed through participatory methods, clarification of PPG roles in decision making, and addressing representational legitimacy through wider survey consultation. CONCLUSION: Combining participatory practices and facilitated participatory methods enabled patients to influence decision making about general practice service improvement. The policy of mandatory PPGs needs updating to recognise the need to resource participation in a meaningful way.

The patient experience of skill mix changes in primary care: an in-depth study of patient 'work' when accessing primary care.

BACKGROUND: This paper presents insights into patient experiences of changes in workforce composition due to increasing deployment in general practice of practitioners from a number of different professional disciplines (skill mix). We explore these experiences via the concept of 'patient illness work'; how a patient's capacity for action is linked to the work arising from healthcare. METHODS: We conducted four focus group interviews with Patient Participation Group members across participating English general practitioner practices. Thematic analysis and a theoretical lens of illness work were used to explore patients' attempts to understand and navigate new structures, roles and ways to access healthcare. RESULTS: Participants' lack of knowledge about incoming practitioners constrained their agency in accessing primary care. They reported both increased and burdensome illness work as they were given responsibility for navigating and understanding new systems of access while simultaneously understanding new practitioner roles. CONCLUSIONS: While skill mix changes were not resisted by patients, they were keen to improve their agency in capacity to access, by being better informed about newer practitioners to accept and trust them. Some patients require support to navigate change, especially where new systems demand specific capacities such as technological skills and adaptation to unfamiliar practitioners.

Participatory codesign of patient involvement in a Learning Health System: How can data-driven care be patient-driven care?

BACKGROUND: A Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating 'virtuous cycles' between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being 'data donors' rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS. DESIGN: Ten participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs. RESULTS: The contributors proposed three exemplar roles for patients in patient-driven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. 'Epistemic injustice' was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice). DISCUSSION: Patient involvement in an LHS should be 'with and by' patients, not 'about or for'. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a 'virtuous alliance' to achieve change. PATIENT OR PUBLIC CONTRIBUTION: Public contributors were active partners throughout, and co-authored the paper.

More than a method: trusting relationships, productive tensions, and two-way learning as mechanisms of authentic co-production.

BACKGROUND: Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (researchers) and knowledge users (health care stakeholders). Patients and service users are a neglected user group, and there is a need for transparent reporting and critical review of methods used to co-produce knowledge with patients. This study aimed to explore the potential of participatory codesign methods as a mechanism of supporting knowledge sharing, and to evaluate this from the perspective of both researchers and patients. METHODS: A knowledge mobilisation research project using participatory codesign workshops to explore patient involvement in using health data to improve services. To evaluate involvement in the project, multiple qualitative data sources were collected throughout, including a survey informed by the Generic Learning Outcomes framework, an evaluation focus group, and field notes. Analysis was a collective dialogic reflection on project processes and impacts, including comparing and contrasting the key issues from the researcher and contributor perspectives. RESULTS: Authentic involvement was seen as the result of "space to talk" and "space to change". "Space to talk" refers to creating space for shared dialogue, including space for tension and disagreement, and recognising contributor and researcher expertise as equally valuable to the discussion. 'Space to change' refers to space to adapt in response to contributor feedback. These were partly facilitated by the use of codesign methods which emphasise visual and iterative working, but contributors emphasised that relational openness was more crucial, and that this needed to apply to the study overall (specifically, how contributors were reimbursed as a demonstration of how their input was valued) to build trust, not just to processes within the workshops. CONCLUSIONS: Specific methods used within involvement are only one component of effective involvement practice. The relationship between researcher and contributors, and particularly researcher willingness to change their approach in response to feedback, were considered most important by contributors. Productive tension was emphasised as a key mechanism in leading to genuinely hybrid outputs that combined contributor insight and experience with academic knowledge and understanding.

We conducted a study exploring how patients could be involved in improving services using health data. This paper reports on the evaluation of that study. We collected different kinds of feedback throughout, including a survey of impacts on contributors, a focus group to reflect on what worked well and what could be done better, and also sharing thoughts throughout the study itself. We analysed this feedback together, to make sure that both contributor and researcher perspectives were considered equally.We found that the successful co-production that happened during the study was the result of having 'space to talk' and 'space to change'. Space to talk that meant we all shared our views and recognised each other as experts bringing equally important knowledge. Space to change meant that we acted on the knowledge shared, to change both the study and to change how we worked together.We found that these themes occurred at multiple levels. They were partly achieved by the specific participatory codesign methods that were used, but equally or perhaps more important was the trusting relationship between the researcher and contributors, including openness to explore tensions. The wider systems that supported involvement, in this case the financial reimbursement for contributor time, were also as important to this as the things that happened within the study itself.We recommend that future work creates 'space to talk' and 'space to change', and reports openly on how both contributors and researchers are affected by this.

Incidence, nature and causes of avoidable significant harm in primary care in England: retrospective case note review.

OBJECTIVE: To estimate the incidence of avoidable significant harm in primary care in England; describe and classify the associated patient safety incidents and generate suggestions to mitigate risks of ameliorable factors contributing to the incidents. DESIGN: Retrospective case note review. Patients with significant health problems were identified and clinical judgements were made on avoidability and severity of harm. Factors contributing to avoidable harm were identified and recorded. SETTING: Primary care. PARTICIPANTS: Thirteen general practitioners (GPs) undertook a retrospective case note review of a sample of 14 407 primary care patients registered with 12 randomly selected general practices from three regions in England (total list size: 92 255 patients). MAIN OUTCOME MEASURES: The incidence of significant harm considered at least 'probably avoidable' and the nature of the safety incidents. RESULTS: The rate of significant harm considered at least probably avoidable was 35.6 (95% CI 23.3 to 48.0) per 100 000 patient-years (57.9, 95% CI 42.2 to 73.7, per 100 000 based on a sensitivity analysis). Overall, 74 cases of avoidable harm were detected, involving 72 patients. Three types of incident accounted for more than 90% of the problems: problems with diagnosis accounted for 45/74 (60.8%) primary incidents, followed by medication-related problems (n=19, 25.7%) and delayed referrals (n=8, 10.8%). In 59 (79.7%) cases, the significant harm could have been identified sooner (n=48) or prevented (n=11) if the GP had taken actions aligned with evidence-based guidelines. CONCLUSION: There is likely to be a substantial burden of avoidable significant harm attributable to primary care in England with diagnostic error accounting for most harms. Based on the contributory factors we found, improvements could be made through more effective implementation of existing information technology, enhanced team coordination and communication, and greater personal and informational continuity of care.

Trials need participants but not their feedback? A scoping review of published papers on the measurement of participant experience of taking part in clinical trials.

BACKGROUND: Participant recruitment and retention are long-standing problems in clinical trials. Although there are a large number of factors impacting on recruitment and retention, some of the problems may reflect the fact that trial design and delivery is not sufficiently 'patient-centred' (i.e., sensitive to patient needs and preferences). Most trials collect process and outcome measures, but it is unclear whether patient experience of trial participation itself is routinely measured. We conducted a structured scoping review of studies reporting standardised assessment of patient experience of participation in a trial. METHODS: A structured search of Medline, PsycINFO, Embase and CINAHL (Cumulative Index to Nursing and Allied Health Literature) and hand searching of included studies were conducted in 2016. Additional sources included policy documents, relevant websites and experts. We extracted data on trial context (type, date and location) and measure type (number of items and mode of administration), patient experience domains measured, and the results reported. We conducted a narrative synthesis. RESULTS: We identified 22 journal articles reporting on 21 different structured measures of participant experience in trials. None of the studies used a formal definition of patient experience. Overall, patients reported relatively high levels of global satisfaction with the trial process as well as positive outcomes (such as the likelihood of future participation or recommendation of the trial to others). CONCLUSIONS: Current published evidence is sparse. Standardised assessment of patient experience of trial participation may provide opportunities for researchers to enhance trial design and delivery. This could complement other methods of enhancing the patient-centredness of trials and might improve recruitment, retention, and long-term patient engagement with trials.

Frequency and nature of potentially harmful preventable problems in primary care from the patient's perspective with clinician review: a population-level survey in Great Britain.

OBJECTIVES: To estimate the frequency of patient-perceived potentially harmful problems occurring in primary care. To describe the type of problem, patient predictors of perceiving a problem, the primary care service involved, how the problem was discussed and patient suggestions as to how the problem might have been prevented. To describe clinician/public opinions regarding the likelihood that the patient-described scenario is potentially harmful. DESIGN: Population-level survey. SETTING: Great Britain. PARTICIPANTS: A nationally representative sample of 3975 members of the public aged ≥15 years interviewed during April 2016. MAIN OUTCOME MEASURES: Counts of patient-perceived potentially harmful problems in the last 12 months, descriptions of patient-described scenarios and review by clinicians/members of the public. RESULTS: 3975 of 3996 participants in a nationally representative survey completed the relevant questions (99.5%). 300 (7.6%; 95% CI 6.7% to 8.4%) of respondents reported experiencing a potentially harmful preventable problem in primary care during the past 12 months and 145 (48%) discussed their concerns within primary care. This did not vary with age, gender or type of service used. A substantial minority (30%) of the patient-perceived problems occurred outside general practice, particularly the dental surgery, walk in clinic, out of hours care and pharmacy. Patients perceiving a potentially harmful preventable problem were eight times more likely to have 'no confidence and trust in primary care' compared with 'yes, definitely' (OR 7.9; 95% CI 5.9 to 10.7) but those who discussed their perceived-problem appeared to maintain higher trust and confidence. Generally, clinicians ranked the patient-described scenarios as unlikely to be potentially harmful. CONCLUSIONS: This study highlights the importance of actively soliciting patient's views about preventable harm in primary care as patients frequently perceive potentially harmful preventable problems and make useful suggestions for their prevention. Such engagement may also help to improve confidence and trust in primary care.

Development and piloting of a survey to estimate the frequency and nature of potentially harmful preventable problems in primary care from a UK patient's perspective.

OBJECTIVES: To design and pilot a survey to be used at the population level to estimate the frequency of patient-perceived potentially harmful preventable problems occurring in UK primary care. To explore the nature of the problems, patient-suggested strategies for prevention and opinions of clinicians and the public regarding the potential for harm. DESIGN: A survey was codesigned by three members of the public and one researcher and piloted through public and patient involvement and engagement networks. SETTING: Self-selected sample of the UK population. PARTICIPANTS: 977 members of the public accessed the online survey during October and November 2015. PRIMARY OUTCOME MEASURES: Respondent feedback about the ease of completion of the survey, quality of responses in terms of review by clinicians and members of the public, preliminary estimates of the frequency and nature of patient-perceived potentially harmful problems occurring in the last 12 months. RESULTS: 638 (65%) members of the public completed the survey and few respondents reported any difficulty in understanding or completing the survey. 132 (21%) respondents reported experiencing a potentially harmful preventable problem during the past 12 months and 108 (82%) of these respondents provided a description that was adequate for at least one clinician to form an opinion about the potentially harmful problem. Respondents were older than the UK generally, more likely to work or volunteer in the healthcare sector and tended to use primary care more frequently but their confidence and trust in their own general practitioner (GP) was similar to that of the UK population as measured by the annual English GP patient survey. CONCLUSIONS: The survey was acceptable to patients and mostly provided data of sufficient quality for review by clinicians and members of the public. It is now ready to use at a population level to estimate the frequency and nature of potentially harmful preventable problems in primary care from a patient's perspective.

Understanding the epidemiology of avoidable significant harm in primary care: protocol for a retrospective cross-sectional study.

INTRODUCTION: Most patient safety research has focused on specialist-care settings where there is an appreciation of the frequency and causes of medical errors, and the resulting burden of adverse events. There have, however, been few large-scale robust studies that have investigated the extent and severity of avoidable harm in primary care. To address this, we will conduct a 12-month retrospective cross-sectional study involving case note review of primary care patients. METHODS AND ANALYSIS: We will conduct electronic searches of general practice (GP) clinical computer systems to identify patients with avoidable significant harm. Up to 16 general practices from 3 areas of England (East Midlands, London and the North West) will be recruited based on practice size, to obtain a sample of around 100 000 patients. Our investigations will include an 'enhanced sample' of patients with the highest risk of avoidable significant harm. We will estimate the incidence of avoidable significant harm and express this as 'per 100 000 patients per year'. Univariate and multivariate analysis will be conducted to identify the factors associated with avoidable significant harm. ETHICS/DISSEMINATION: The decision regarding participation by general practices in the study is entirely voluntary; the consent to participate may be withdrawn at any time. We will not seek individual patient consent for the retrospective case note review, but if patients respond to publicity about the project and say they do not wish their records to be included, we will follow these instructions. We will produce a report for the Department of Health's Policy Research Programme and several high-quality peer-reviewed publications in scientific journals. The study has been granted a favourable opinion by the East Midlands Nottingham 2 Research Ethics Committee (reference 15/EM/0411) and Confidentiality Advisory Group approval for access to medical records without consent under section 251 of the NHS Act 2006 (reference 15/CAG/0182).