Trauma survivors’ views on having clinical notes accessed for research: a focus group study

Contact: Angela Sweeney Email:  Department: Health Services and Population Research Department, Institute of Psychiatry, Psychology and Neuroscience Institution: King’s College London Project timeline: January to March 2023 Project duration: 13 weeks Closing date: November 24th Expertise required: Lived experience of the topic (complex trauma, that is, trauma that was prolonged and repeated) would be an advantage but is not essential. Please note that you would not at any point be asked about your experiences of trauma. Experience of thematic analysis would also be an advantage but again is not essential. Project description: We have an opportunity for a LISS-DTP student intern to join our friendly team and take a key role in a small research study and subsequent academic paper. We are a multidisciplinary team, including trauma survivor researchers based at King’s College London, City University of London and Lambeth HEART. Together, we are conducting a large study of trauma survivors’ care pathways (the Pathways study). Our Lived Experience Advisory Group for Pathways shared concerns with us about our plans to conduct research using clinical records. After discussion, we decided to conduct preliminary research exploring the ethics of research with clinical records from trauma survivors’ perspectives. To do this, we will hold two focus groups with people who have experienced complex trauma (trauma that is repeated and prolonged). The focus groups will consider trauma survivors’ views of having their NHS clinical records accessed for research, and will discuss the best way of doing this sort of research using clinical records in the future. We anticipate holding nuanced discussions of issues such as consent, safety, anonymisation, communication, lived experience involvement and control, intersectionalities, and recommendations. The focus groups will be analysed using a largely inductive thematic analysis. To keep the analysis manageable, it will be highly focused on issues that relate to navigating the ethics of research with clinical records and generating recommendations for the field. We then plan to hold repeat focus groups, with the same participants, to present back what we learnt in the first groups and to check the validity of our interpretations and recommendations. Findings will be written up and published in an academic journal, and we will write a separate, accessible report for our participants. We will consider producing an engaging infographic, blog, or similar to support wider dissemination. Description of the work involved: Ethics has been secured and recruitment is underway. The student’s role will be to attend the focus groups, with the option of co-facilitating if that is preferred (if not, the core team are very happy to facilitate). The student will then take a lead role in the thematic analysis, working closely with the core team. This means regularly discussing the emerging findings with the core team, and considering points of consensus and divergence to enrich the final analysis. In the final stages, the student will be supported to co-write a participant report and academic publication with the core team. The timescales are flexible, but we anticipate the following: January: focus groups 1 and 2, thematic analysis. February: repeat focus groups 1 and 2, final analysis. March: write up (with the core team). Student Benefits: We think that this is a fascinating and rich area of research, and will make for an achievable project for the student with the following anticipated benefits: – Working with an experienced, small core team who will provide support and guidance. This includes the opportunity to practice data analysis in a supportive environment. – Opportunity to gain experience of working with groups (supervisors, focus group participants, lived experience advisory group) to further develop and ground qualitative analyses. – A co-authored academic publication – Contributing to ethical approaches to research with clinical records – Opportunity to engage in wider activities (e.g. writing group, arts group etc), as preferred by the student