BackgroundEvidence-based medicine (EBM) is maturing from its early focus on epidemiology to embrace a wider range of disciplines and methodologies. At the heart of EBM is the patient, whose informed choices have long been recognised as paramount. However, good evidence-based care is more than choices.DiscussionWe discuss six potential ‘biases’ in EBM that may inadvertently devalue the patient and carer agenda: limited patient input to research design, low status given to experience in the hierarchy of evidence, a tendency to conflate patient-centred consulting with use of decision tools; insufficient attention to power imbalances that suppress the patient’s voice, over-emphasis on the clinical consultation, and focus on people who seek and obtain care (rather than the hidden denominator of those that do not seek or cannot access care).SummaryTo reduce these ‘biases’, EBM should embrace patient involvement in research, make more systematic use of individual (‘personally significant’) evidence, take a more interdisciplinary and humanistic view of consultations, address unequal power dynamics in healthcare encounters, support patient communities, and address the inverse care law.

ObjectiveTo explore the impact of patient education on the lives of people with diabetes, including the effect on interactions with doctors and other healthcare professionals.DesignQualitative user-led study using longitudinal interviews and 146 h of participant observation. Data were analysed using a narrative approach.Participants21 patients with type 1 diabetes, those either about to attend a patient education course or those who had completed the course in the previous 10 years.SettingEstablished patient education centres in three UK teaching hospitals teaching the Dose Adjustment for Normal Eating (DAFNE) course.ResultsBoth postcourse and several years later, most participants spoke of the experience of taking part in education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes. However, interactions within the health system following patient education could be fraught. Participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered. When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients' ability to continue effective self-management.ConclusionsPatients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully. There is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise.

ObjectivesWhile documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information.Design and settingA before and after comparison of PPI reported in research papers published in The BMJ before and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers.ResultsBetween 1 June 2013 and 31 May 2014, The BMJ published 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy, The BMJ published 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors.ConclusionsInfrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction of The BMJ’s policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process.

BackgroundPolicy‐makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital.ObjectiveTo explore power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship.MethodsNarrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically.FindingsSymbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time.Discussion and conclusionsResearch into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power.

Diabet. Med. 29, 257–259 (2012)AimsTo study the reasons for attendance behaviour from the patient viewpoint at a young adult diabetes outpatient clinic.MethodsAttendance rates for 231 clinic appointments over 19 months for 102 patients were calculated. Semi-structured interviews were conducted with a purposive sample of 17 of the 102. The interviews encouraged participants to describe routines, thoughts and feelings around clinic appointments. Observations were made of the clinic system. Themes arising from patients’ emotional and practical issues around attendance were generated from the data.Results‘Did not attend’ rates for the clinic over the study period were 15.7%. However, bureaucratic problems created many ‘missed’ appointments; most instances of ‘did not attend’ investigated were attributable to communication failures. Participants did not divide neatly into ‘attenders’/’non-attenders’; many had complex mixed attendance records. Most weighed the value of attendance against immediate obstacles such as incompatible work/clinic hours. Reminders were seen as important, particularly for this age group. Respondents identified fear of being judged for ‘poor control’ as a major factor in attendance decisions, suggesting that having a high HbA1c level may lead to non-attendance, rather than vice versa.ConclusionsHealth professionals’ supportive, non-judgemental attitude is important to patients considering clinic attendance. In this study, improved communication, reminders and flexible hours might reduce ‘did not attend’ rates.