Plain English summaryResearchers who conduct studies in health and social care are encouraged to involve the public as early as possible in the process of designing their studies. Before their studies are allowed to start researchers must seek approval from a Research Ethics Committee, which will assess whether the study is going to be safe and ethical for patients or healthy volunteers to take part in. The process of ethical review does not consider how researchers work with patients and the public early on to design their studies. Furthermore, there is no requirement for researchers to seek ethical approval for public involvement. However, in our work advising researchers about public involvement we have found that the ways in which researchers involve the public in the design of their studies are sometimes unintentionally unethical, and this is the focus of our paper. We have observed ten areas where ethical issues may arise because of the actions researchers may or may not take and which might consequently have a negative impact. Therefore, we have used these observations to develop a “framework” to help researchers and the public work together at the early design stage in ways that are ethical. Our intention for the framework is to help researchers be mindful of these ten areas and how easily ethical issues can arise. The framework suggests some ways to overcome the potential issues in each of the ten areas. The ten areas are: 1) Allocating sufficient time for public involvement; 2) Avoiding tokenism; 3) Registering research design stage public involvement work with NHS Research & Development Trust Office at earliest opportunity; 4) Communicating clearly from the outset; 5) Entitling public contributors to stop their involvement for any unstated reasons; 6) Operating fairness of opportunity; 7) Differentiating qualitative research methods and public involvement activities; 8) Working sensitively; 9) Being conscious of confidentiality and 10) Valuing, acknowledging and rewarding public involvement.We looked to see whether any other similar approaches to helping researchers address potential ethical issues when working with the public on designing studies have been published and to our knowledge none exist. Our framework is presented as a draft and believe that it would now benefit from input from researchers and the public to gauge how useful it is and whether there are any other possible situations that it might need to cover.AbstractThe current paper highlights real life examples of how ethical issues can arise during public involvement activities at the research design stage. We refer to “the research design stage” as the time between the generation of the research ideas and when formal permissions to start the work including ethical approval are granted. We argue that although most researchers work ethically at this early stage, some may still benefit from being informed about ethically conscious approaches to involving the public.The paper highlights 10 ethical issues that we have observed with involving...
Background Increasingly, research grant awarding bodies are regarding involvement at all stages of research, including prior to funding, as good practice. However, it is unclear how researchers should pay for this. Therefore, a pre-funding bursary scheme was designed. Up to £500 could be requested for involvement to develop a grant application for which user involvement is a key requisite for the funding body concerned. As the bursary scheme had run for 2 years, an evaluation was conducted to ascertain whether the scheme was effective for incorporating early involvement and in developing the grant proposal.
Aims During this presentation we will share learning from a Wellcome Trust Engagement Fellowship. We will present examples of artsbased public involvement activities, including a sculpture project with young people and a play about dementia. We aim to raise awareness of what public involvement can gain from the arts; stimulate discussion about the pros and cons of different approaches; and discuss how to encourage more creativity within public involvement. Why is it important and to whom? Public involvement has been criticised for a lack of diversity and inclusivity. By diversifying the involvement activities which we offer, we may attract a wider variety of people. Arts based activities also have the potential to facilitate discussion in an accessible, safe and fun way. This session may be of particular interest to people who are planning or facilitating public involvement activities (members of the public and researchers). What difference has, or could, this project make? Throughout the project, both researchers and members of the public have found arts activities stimulating and useful. However people have encountered some practical challenges when running these projects. Specifically, people do not feel they have the necessary skills to plan and facilitate arts activities. I will discuss how we might address that skills gap and invite the audience to suggest what support is needed. What will people take away from session? An understanding of what arts/health collaborations can offer public involvement Access to resources and contacts to support future projects Acknowledgments This work is funded by the Wellcome Trust
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