PatientView has been presented at many meetings in talks or posters and there have been several substantive publications. Most research was initially around views on the system. It is now clear that a very large proportion of patients can use it and value it highly – and also that clinicians increasingly rate it highly too. Increasingly work has studied factors affecting uptake, why uptake has been so high, and latterly it has been possible to explore more detailed analyses of which patients use the system, and how and why.
Current and future research is increasingly around whether PatientView can improve care, through objectively better clinical outcomes and/or quality improvement and streamlining of working practices.
In parallel with this formal academic research we are constantly listening to patient and staff feedback about the system, what is good, what could be better, what they’d like to see; and making changes in response to this.
Full publications from the project
Phelps RG, J Taylor, K Simpson, J Samuel, AN Turner. 2014. Patients continuing use of an online health record: a quantitative evaluation of 14,000 years of patient acccess data. J Med Internet Res 16:e241
Bartlett C, K Simpson, AN Turner. 2012. Patient access to complex chronic disease records on the Internet. BMC Medical Informatics and Decision Making (Open Access) biomedcentral.com/1472-6947/12/87
Selected presentations and reports
Rao A, D Pitcher, RG Phelps. 2014. Patients that utilise a patient facing on line health record have better health outcomes (presentation, abstract) renalreg.org/wp-content/uploads/2014/12/ASN-RPV-V1e.pdf (frequent or early users have better phosphate control, and are more likely to choose home dialysis, live transplantation)
Our Recruitment Toolkit uses results of multiple analyses to suggest ways to interest and engage patients.
Staff are encouraged to submit academic work resulting from their association with PatientView for peer review and presentation or publication. This can bring professional and academic recognition. Decisions on authorship adhere to the recommendations of the International Committee of Medical Journal Editors.
Patient anonymity is protected in any publications and in all other materials around the project, except where explicit consent has been obtained.