Plain English summaryAs much as 85 % of health research is believed to be wasted because it is not published or reported, the design is poor or does not consider what is already known in the topic area. Although a great deal of work has been done in the UK to reduce research waste, the role of patients and the public has not been discussed.This paper describes a survey, on the role of patients in reducing research waste, which was carried out as part of a larger piece of work on reducing waste in healthcare. The study found that patients were interested in reducing research waste. The key roles they play in research, for example being co-applicants for funding, members of project teams, co-researchers, means they have some shared responsibility for making sure the quality of research is high. This includes finding out what is already known about a topic and getting the study design right before seeking funding, publishing and reporting the results when the study is finished. Recognising where waste happens is part of good management of a research study.AbstractBackground Eighty five per cent of health research expenditure is potentially wasted due to failure to publish research, unclear reporting of research that is published, and the failure of new research studies to systematically review previous research in the same topic area, poor study design and conduct. A great deal of progress has been made to address this issue but the role of patients and the public has not been considered.Main A small survey was undertaken, as part of a larger programme of work on reducing health and care waste, to understand the role of patients in reducing research waste. The study showed that patients are interested in this issue particularly in relation to the prioritisation of research and patient and public involvement.Conclusions Patients undertake key roles in the research process including co-applicancy, project management, or as co-researchers. This brings responsibility for ensuring high quality research and value for money. Responsibility for recognition of the potential for wasteful practices is part of the conduct and operation of research studies.

Purpose – A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines. Design/methodology/approach – PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners’ experience within another project. Findings – The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation. Originality/value – The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.

Purpose – The purpose of this paper is to present some results of a qualitative study exploring people's memories of the pathways to the first episode of self-wounding. Specifically it will focus on the issue of “suicidality”. Design/methodology/approach – In total, 11 participants, aged between 19 and 50, were described. They were asked to describe their first episode of self-wounding. The interviews were conducted using a semi-structured topic guide. An initial thematic and a subsequent narrative analysis were used to explore the participants’ stories. Findings – The narratives of self-wounding show that the first episode occurs in a complex landscape of interactions between events and emotions. Even when participants were aware of suicidal feelings before self-wounding, the suicidal intention was abandoned as the self-wounding was shown to be an effective method for dealing with distress. For most of the participants the self-wounding was not associated with suicidality but with a strong need to gain or regain control of an emotionally charged and chaotic environment. Practical implications – Focusing on the first episode of self-harm holds the key to a better appreciation of the underlying meanings of self-wounding as a complex and dynamic experience. It can provide health care practitioners with a new direction to understanding people's individual motivations rather than focusing relying on behaviour generalised assumptions. Originality/value – This study provides a rare insight into the first episode of self-harm as a unique event. It is also a rare example of publicly funded service-user research with a focus on issues which are meaningful to them.

Access to this document was granted through an Emerald subscription provided by emerald-srm:368933 [] For AuthorsIf you would like to write for this, or any other Emerald publication, then please use our Emerald for Authors service information about how to choose which publication to write for and submission guidelines are available for all. Please visit www.emeraldinsight.com/authors for more information. About Emerald www.emeraldinsight.comEmerald is a global publisher linking research and practice to the benefit of society. The company manages a portfolio of more than 290 journals and over 2,350 books and book series volumes, as well as providing an extensive range of online products and additional customer resources and services.Emerald is both COUNTER 4 and TRANSFER compliant. The organization is a partner of the Committee on Publication Ethics (COPE) and also works with Portico and the LOCKSS initiative for digital archive preservation.Anne-Laure Donskoy is Independent Survivor Researcher at Bristol, UK. AbstractPurpose -The purpose of this paper is to present a focused viewpoint of coercion in psychiatry from the perspective of a survivor and activist. Design/methodology/approach -This paper takes elements from and builds on three recent conference and seminar presentations presented in France and the UK in 2014: International Congress on Clinical Ethics Consultation 2014, Paris: Comité Européen Droit Ethique et Psychiatrie, June 2014, Perpignan and Royal College of Psychiatrists' Annual Congress, London 2014.Findings -Coercion in psychiatry runs counter to the highest human rights standards, rules out genuine care and profoundly undermines trust. Research limitations/implications -Additional research from a user and survivor experience would offer a different and more grounded perspective of how coercion is actually exerted and experienced through, for instance, a narrative approach. Originality/value -The paper is proposed from the viewpoint of a survivor of psychiatry and human rights activist. It is a contribution towards a more user/survivor oriented discourse in this area.Psychiatry and coercion are like conjoined twins sharing a single heart: they cannot be separated without killing at least one (Schaler, 2004).

Purpose Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions. Design/methodology/approach Experiences of engagement as co-applicants in research funding applications, of involvement as research study team members, and as co-researchers were gathered from a range of service user and carer experts. Consultation and a workshop gathered further evidence from a range of stakeholders across the research management community. Findings Service users and carers, who contribute to the research protocol and process, feel a strong sense of responsibility to ensure the high quality of a research study. However, they may be new to their roles, status and key responsibilities when acting as project team members, co-researchers or co-applicants engaging in funding applications. The responsibility of sponsors, grant holding organisations, funders and other members of the research community is to communicate with and support service users and carers in those roles. More needs to be done to understand the contractual, a legal and governance issues and responsibilities that are specific to service user and carer co-applicants, project team members and co-researchers, from both an organisational and individual service user and carer perspective. Practical implications The implications of the findings are to raise awareness of the practical, legal and ethical issues arising from this type of involvement and the potential risks arising from lack of cohesion or understanding. The review also highlights the concerns and barriers service users and carers may find in becoming involved. Originality/value The findings highlight a range of issues for research regulators, sponsors and investigators to consider to ensure service users and carers can fulfil their responsibilities and be supported in doing so.