IntroductionOptimal care of patients who are at risk of acute deterioration requires compassionate and competent communication and shared decision making (Department of Health 2008). ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) is a new national process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices (ReSPECT Steering Group 2017).The ReSPECT Educational Material Project Operations Group at UCLPartners is creating an innovative web-app to support health and care staff of all disciplines, in all settings, in the ReSPECT process.AimsUnderstand user learning needs and utilise their experience and knowledge to inform the content of the web-app.MethodsWe conducted interviews and focus groups with 31 health and care staff from a range of settings, in the NHS, third and private sectors, including a NHS trust that has implemented ReSPECT. We explored the pedagogy of online learning and the reality of engaging in such conversations.Results• Users need to see representations of themselves to learn from and connect with the material.• Apprenticeship learning models that encourage reflection are the most effective for the difficult conversations.• Length and credibility of information are key factors in engaging with learning materials.• Online learning is often rushed through to get to the evaluation part.ConclusionThese insights are guiding the development of the web-app. We will use iterative-design to test the content and improve usability. The educational impact of the web-app and impact on patient outcomes will be evaluated in future studies.References. Department of Health, 2008.End of Life Care Strategy – promoting high quality care for all adults at the end of life,. ReSPECT Steering Group, 2017. ReSPECT (Recommended Summary Plan for Emergency Care and Treatment). Available at: http://www.respectprocess.org.uk.
COVID-19 and its aftermath highlight the importance of patient self-care and involvement in monitoring and improving their health. Resources to guide this are essential. Our objective was to create a web-based patient education tool, to facilitate patient education and empowerment for people with epilepsy, multiple sclerosis and Parkinson’s disease, available without cost to patients, carers and clinicians. This project was conducted within community and secondary neurology services. Patients and their carers were involved in designing, reviewing and revising the tool, as equal partners with clinicians and digital engineers. A web-based design template was developed with graphics and links to enable patients to create personalised plans. Participants are patients, carers, clinicians (neurology consultants and specialist nurses), neurological charities, the London Neuroscience Clinical Network, NHS England and Shift.ms (a service design team with experience in creating digital services for individuals living with neurological conditions). Shift.ms conducted in-depth interviews. Clinicians used evidence from personal and PubMed databases. Shift.ms analysed and co-ordinated the responses, and designed the pilot tool. Confidence College provides a delivery model for patient education relating to multiple sclerosis, epilepsy and Parkinson’s disease. It requires follow-up evaluation regarding uptake. This web-based accessible patient empowerment tool has no limit on recurrent use, low maintenance costs and no additional costs in up-scaling the number of users. It is ideally suited for use during and after the COVID-19 pandemic.
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