Healthcare policies promote technology use as a means to modernise healthcare and support seamless, person-centred care. However, despite information technology (IT) use being common practice in clinical settings, its use in patients’ homes is still developing. This study explored patients’ perspectives on the use of IT and electronic health records (EHR) in their home environment. Semi structured interviews were conducted with housebound patients who received regular care from the district nursing team, and thematic data analysis was undertaken. Participants reported variable knowledge and experiences with mobile working and EHR. Most were positive and identified clear benefits for clinicians. However, few participants reported benefits themselves. Contrary to popular belief, IT use is expected by older patients and, while barriers were identified, the overall opinion was positive. A digital divide was apparent, with some at risk of being disadvantaged by the increasing use of technology.
Background: Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods: This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results: This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions: For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.