Understanding the value of PatientView for enabling self-care practice in Chronic Kidney Disease

Background: Individual responsibility and self-care are seen as ways to overcome some of the challenges for long-term health care provision. Patients are being encouraged to take an active role in their health care. Access to health information via a web-based, patient-facing portal is an innovative way to engage in self-care. PatientView is one such portal, which was developed to allow patients with kidney disease access to parts of their health record. It was thought that the use of PatientView would improve self-care activity but there was little evidence to support this claim. Objective: To gain an understanding of how patients with kidney disease use PatientView in their self-care practice. Participants: Six users and four non-users of PatientView. Design: Qualitative, semi-structured interviews and participant observation. Approach: A practice-based approach was used to collect qualitative data to better understand how patients use PatientView in daily life to enable self-care. Participants were invited to “show the researcher” how they use PatientView and to describe how they translated the information into actions of self-care. Inductive analysis was used to identify themes. Results: The analysis identified four key themes, which were non-linear inter-related. Patients engage with PatientView because it supports ways of knowing that are of direct importance to self-care activity. Patients interact with PatientView and translate the information they gain from using it into actions that support self-care. A consequence of engaging with PatientView is that patients can involve their family more in their care and this helps to reduce the burden on health care professionals. Conclusion: Patient interactions with PatientView are inter-related, multi-dimensional and differ according to the individual's positioning within a continuum of care. Nonetheless, these interactions can be captured and doing so provides a basis for understanding of how patients create and sustain opportunities for care through information technology.