This report provides guidelines for a new way of presenting pathology information to patients so that the results format can provide, not just a laboratory output but also a valuable tool to be shared between patients and clinicians. The ultimate aim is to increase patient understanding and management of their disease, which would lead to better health and higher life expectation for the patients as well as reduced cost managing the disease.
This guideline is based on the idea that a pathology lab report can be more than just a medium to transfer data from the laboratory to the GP. It is thought of as a user interface between the laboratory and the patient, between data and understanding. A GP with the necessary interpersonal skills and time can form this interface verbally but it can never be taken home by the patient; the patient never owns the interface and often the knowledge and understanding.
Evidence of the success of the approach taken in this research can be summarised from our experience with the patient focus groups in testing the prototypes and guideline principles. The patients had a variety of views about what information should be included and how it should look, but there was overwhelming support for augmenting traditional pathology reports with prototypes that make the information ‘consumable’ by patients. Indeed in one focus group session of CALD diabetes patients, the participants were enthusiastically demanding to know when they would be receiving their next HbA1C results in the new prototype format. They said they really wanted it delivered in a matter of months. While the evidence collected showed considerable support from both patients and doctors, the visible patient enthusiasm provided proof of our concept over and above any scientific proofs.
Post-trial, GP enthusiasm for a single pictorial tool was clear if it can be supported by pathology companies and their software and does not add overhead to doctors. Doctors see the tool as potentially providing a valuable support in consultations with patients but agree that motivating patients to act is closely related to patient attitudes and values and that there is merit in exploring the idea of individual tailored reports for future work.