Background Patient participation is increasingly recognized as a key component in the redesign of health care processes and is advocated as a means to improve patient safety. We explored the usage of participatory engagement in patient-created and co-designed medical records for emergency admission to hospital. Methods Design: Prospective iterative development and feasibility testing of personal health records. Setting: An Acute Medical Unit in a University affiliated hospital. Participants: Patients admitted to hospital for medical emergencies. Interventions: We used a design-led development of personal health record prototypes and feasibility testing of records completed by patients during the process of emergency admission. ‘Express-check-in’ records contained items of social history, screening questions for sepsis and acute kidney injury, in addition to the patients’ ideas, concerns and expectations. Main outcomes measures: The outcome metrics focused on feasibility and a selection of quality-domains: Effectiveness of recording relevant history, time-efficiency of documentation process, patient centredness of resulting records, staff and patient feedback. The incidence of sepsis and acute kidney injury were used as surrogate measures for assessing the safety impact. Results The medical record prototypes were developed in an iterative fashion and tested with 100 patients in which 39 patients were 70 or older, and 25 patients were classified as clinically frail. 96% of the data items were completed by patients with no or minimal help from healthcare professionals. The completeness of these patient records was superior to that of the corresponding medical records in that they contained deeply held beliefs and fears, whereas concerns and expectations recorded by patients were only mirrored in a small proportion of the formal clinical records. The sepsis self-screening tool identified 68% of patients requiring treatment with antibiotics. The intervention was feasible independent of the level of formal education and effective in frail and elderly patients with support from family and staff. The prototyped records were well received and felt to be practical by patients and staff. The staff indicated that reading the patients’ documentation led to significant changes in their clinical management. Conclusions Medical record accessibility to patients during hospital care contributes to the co-management of personal health care and might add critical information over and above the records compiled by healthcare professionals.

Clinicians can enable patients to actively participate in their care but communication with patients is often poor and highly variable. The aim of this study was to explore patients’ understanding of their current illness while in hospital and using a codesign process to create prototype tools to facilitate better communication during ward rounds.A mixed-methods, multistep design with step 1: Application of a questionnaire addressing domains of care in the acute medical unit; step 2: Development of communication aids that were codesigned with active help of patients, students and a specialist in user centric design to address patient needs and step 3: Evaluation of tools with patients in four Plan–Do–Study–Act cycles.In the initial survey of 30 patients 12 (40%) patients did not know what their diagnosis was and 5 (17%) did not know the results of recent key tests. 20 (67%) patients felt that staff communication and coordination could be improved.An intervention was prototyped with four variations: (1) An A6 ward-round summary sheet completed by doctors during ward rounds. The system worked well but was highly person dependent. (2) An A4 patient-owned diary (‘How to Hospital’) that contained information about key processes in hospital and space to document conversations from rounds and prompts for questions. 10 patients read the diary and commented favourably but did not complete any pages. (3) ‘Diary-cards’: a basic set of information cards was given to patients on admission to hospital. (4) Patient specific ‘diary-cards’ were completed by clinicians—10 forms were piloted during rounds and improved subsequent day information retention of diagnosis to 80%.Our study identified interventions that were feasible but remained person-dependent. The patients’ ownership of information in relation to their care might facilitate retention and satisfaction but the optimal format for these interventions for enhancing communication remains unclear.