Barriers to patient participation in a self-management and education website Renal PatientView: A questionnaire-based study of inactive users

OBJECTIVES The Renal PatientView (RPV) website is an information and education tool aimed at increasing patient involvement in their care. We have conducted this study to elucidate why some users remain inactive on RPV despite initially signing up for the service. METHODS Patients at a teaching hospital in United Kingdom, who originally signed up for RPV but are no longer active (no logins during previous 6 months), were sent paper questionnaires. Responses were collected for up to 6 months. RESULTS Of the 190 questionnaires, 69 (39%) were returned partially or fully completed. Majority of respondents could access computer (94%) and internet (91%) from home. Reasons for inactivity among survey respondents included: loss of login credentials (45%), perception that it did not add anything to existing care (37%), being too busy (13%) and anxiety of viewing results from home (10%). Thirty-seven respondents provided free-text comments. Thematic analysis of these reinforced above findings and also indicated that despite infrequent use, some patients valued RPV availability. Patients made very little reference to using sections of the website other than test results. CONCLUSIONS Patients find RPV a valuable resource. It is, however, mainly seen as a portal to check blood test results; other sections of the website aimed at promoting self-management remain underutilized. Several local and central level changes, such as a robust system of user accounts handling, improved promotion, and emphasis on further development of self-management sections of RPV may help improve participation.