Barriers to adoption of a personal health record in an ophthalmic setting: lessons from implementation of a Glaucoma Patient Passport

PURPOSE: Self-care in chronic disease is increasingly important. In glaucoma services, there is an unmet need for a self-care tool such as a patient passport. This study aims to evaluate adoption of a new self-care tool, the Glaucoma Patient Passport (GPP) within a tertiary hospital glaucoma service. PATIENTS AND METHODS: The GPP was designed following consultation exercises between patients and clinicians at the first and second UK National Glaucoma Think Tanks. A patient questionnaire, comprising a mixed methods quantitative and qualitative research approach was used to explore the utility of GPP, patient attitude to GPP and barriers to adoption, 6 months after GPP receipt. RESULTS: GPP feedback was received from 62 patients. On-going utilization of the GPP after receipt was high, at 84%, with patients most commonly using the GPP at home, to “look for information.” Seventy-three percent reported improved knowledge of glaucoma care since using the GPP, with two-thirds (63%) reporting that the GPP had improved their glaucoma care. Three main themes were identified in exploring barriers to GPP adoption; clinician involvement in GPP use, GPP size, and GPP use in visual impairment. CONCLUSION: Implementation and adoption of the world’s first GPP were a success. GPP utility was high and patient attitudes were predominantly positive, with improved self-care. However, several areas were identified for future GPP improvement. The GPP has the potential to improve patient self-care in glaucoma, bridging the care gap created by the increased workload in glaucoma services.