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.

The 2004 United Kingdom white paper 'Better information, better choices, better health' sets out an ambitious strategy for the provision of health information. 1 Everyone should have improved access to high quality information, health professionals should communicate more effectively with patients, and there should be a nationally coordinated process to produce and deliver information. There has been some progress towards these goals (e.g. NHS Direct now provides consumer health information by telephone, internet and digital television), but many patients and consumers still do not have access to the information they need or want, in a format they can understand. 2 A lack of appropriate health information can have serious or even fatal consequences. 3 As the target date for implementing the strategy is 2008, we discuss health information provision and what can be done to improve health communication. Why do we need health literate patients?Despite substantial investment by the NHS in quality improvement programmes, national service frameworks and the new general practitioner contract, the management of many long-term diseases remains suboptimal. One factor that limits the promotion of clinical effectiveness is low health literacy among patients (Box 1). This is a major obstacle to providing high quality care, as long-term diseases require self-management skills and the ability to negotiate complex treatments and health services.A health literate individual has sufficient knowledge and skills to handle the information demands of the health system, communicate with health professionals, make appropriate use of health services, and contribute to optimizing the management of their own disorders. 4 Patients with good health literacy skills can also act as advisers and mentors for other patients with long-term diseases and thus help spread best practice and improve disease management. Access to informationHealth literate patients require access to appropriate information to participate effectively in their health care. Health literacy is not only about access to information, but it is an important component. Engagement with health information is a prerequisite for shared decision-making and exercising choice, and limited consultation times force increasing reliance on information outside the clinical encounter.In recent years, considerable progress has been made in increasing public access to high quality health information (Box 2), particularly through public websites. The creation of such websites has transformed access to health information for patients who are able to use them. Patients are no longer confined to the information they receive in a patient information leaflet ('PIL') packaged with a medication, or leaflets picked up from their general practice or a hospital clinic. Access to information, however, is not sufficient by itself. Many people need help to find, understand and act on health information, especially written information. Even in developed countries, substantial proportions of the population hav...

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. Electronic supplementary material The online version of this article (10.1186/s13063-019-3444-y) contains supplementary material, which is available to authorized users.