The RCP HIU presents findings of a study to better understand the needs of service users in relation to personal health records (PHRs) and the implications of these findings for providers, health and care professionals and commissioners.
The study contributes to a better understanding of the experiences, needs and aspirations of citizens in relation to PHRs and how these shape views and expectations for PHRs, and related actions.
Views were sought from people with various long-term conditions including diabetes, younger-onset dementia, depression, cancer, ulcerative colitis, renal failure and liver failure. Views were also sought from carers of people with autism, cerebral palsy, Down's syndrome, dementia and mental ill health.
In addition to this report, six user journeys have been developed in the form of audio recordings, journey matrices and narratives. These were developed by a multidisciplinary team using the Integrated Patient Storytelling (IPS) method, which applies oral storytelling techniques to anonymised qualitative data gathered from service user interviews and focus groups. These user journeys provide powerful insights into how people experience PHRs.