Rakesh Patel leads a busy life – half of his working life is spent as a lecturer in medical eduction, and the other half as a renal physician. His interest in the teaching and learning of health professionals and patients brought him here. He said “For me, if what we do doesn’t help the performance of professionals in NHS, or doesn’t improve the patients’ knowledge of themselves and their disease, then it’s not worth doing”.
Rakesh and his group work with people who are interested in metrics, but they want to move beyond numbers. Simple satisfaction surveys can only tell you so much, so they want to examine the patient experience as a whole. They then want to target interventions to improve those metrics.
This group want to create a site that lets patients log on and share their experiences. The key thing is that patients will be in control and will log events that affect them, for instance their first operation. They want to keep the site as simple as possible, so that it’s as accessible as possible and that people can upload videos from their smartphones. The site will then be able to host a timeline of people’s experiences, and will document their own individual journeys.
Rakesh says “Patient education has been reduced to a piece of paper with facts and figures, which is often meaningless to patients. Why not use the essence of patient experience about themselves and their disease to educate others?”
These are the questions that Rakesh is asking in order to do just that:
Event – what has happened?
Symptoms – what symptoms do you have?
Share – what would you like to share with others?
Emotion – what does it evoke for you?
Nuances – what is the personal meaning for you?
Communicate – what do you want to communicate to others?
Experience – what was it like for you and your family?
People can identify with others’ experiences, and the group is hoping that this site can create powerful shared meaning and understanding. The site will aim to help people to make sense of events in their own lives through the experiences of others.
Like everybody I’ve spoken to so far, they don’t want their project to exist in isolation. The group are looking to work with NHS Choices and other patient advocacy groups.
It’s been great to see patients being active in this NHS Hack Day, both as participants and as judges. So it’s only fitting that a project that focuses on patient experience is in the mix for the final award.