Experience from pilot units supported the value of the system, with strongly positive informal feedback from patients and no substantial problems encountered by staff.
We chose to pilot viewing of unscreened (unapproved, live) results because of concerns about the practicality of putting an extra task on hard pressed clinicians and the inevitable delays that this would introduce in presenting the results to patients. Concerns about this turned out to be unfounded. Patients are anxious to know results and it seems they would rather have bad news sooner than wait for clinicians to deliver it. Anecdotally, they were not convinced that bad news was made less bad by being delivered by a member of staff. A clinician commented ‘if a patient contacts the unit about a dangerous potassium value before we have contacted them, that is a good thing’. In the light of this experience, we continued the practice of releasing live data as the project extended.
Patients and patient evaluation
499 patients who had registered to use Renal PatientView (63% of recipients) and 84 who had not registered (43%) returned completed questionnaires. Of user responses, 93% were from patients, 6% carers, 1% parents. Registrants were younger (median 50y versus 57y), but the age-range of patients enrolled was from young children to over 90
years (no paediatric units were included in the evaluation survey). The sex ratio was not significantly different from that of non-registrants. Some differences between registrants and non- registrants hint at the factors that drive patients to seek information about their health: registrants were more likely to have transplants or functioning (likely deteriorating) kidneys, and less likely to be on dialysis; moreover, users were more likely to have had their kidney problem for longer periods, especially longer than 6
years (Table and Figure ). It is likely that the internet-based approach was more accessible to more educated as well as younger patient groups as the age of leaving full-time education was older in registrants than in non- registrants in the patient survey (median 17-18y versus ≤16y).
Characteristics of patients participating in the evaluation survey
Proportions of registrants (users) and non-registrants by age, treatment modality and duration of renal follow up (%) in the evaluation survey.
At the time of the survey respondents reported using the site for a mean of 7.2
months. 88% had accessed it more than twice and 32% over 10 times. 5% had not accessed it at all. The dominant reason given by non-users for not being registered was lack of knowledge of the system (58%), followed by not being able to access the Internet.
Users found the site easy to access and use, and reported the information available to be valuable or very valuable, and that the contents gave them better understanding and empowerment. The results section was the most frequently accessed area. 24% acknowledged ‘I read things that worry me’.
Security was not a matter of concern to the majority of users, but 26% reported being slightly and 7% ‘very concerned’ before enrolling. The level of concern was reduced after using the system, 12% reported being slightly and 1% very concerned. 18% of patients reported that they had changed their passwords after the first forced change.
The extra information most desired by patients was clinical correspondence, which was not available in most of the test units at the time of the survey. There were multiple requests for additional test types, and to see the results of tests sent from other healthcare locations. Written comments reinforced the numerical feedback (Additional file 1
By the end of June 2011, 17,473 registrations were recorded from 47 of the UK’s 75 main renal units (63%). Numbers of patients enrolled in each unit varied from tens to 1,340. Looking at units that had RPV installed for more than 18–24
months there was no clear relationship between length of time that the system had been installed and the registration rate.
Analysis of actual usage data confirms patients’ reports that the system is valued and used. During a typical month (figures are for June 2011) there were an average of 859 visits per day. 9391 registrants, over half of the total, logged in in a single month. Each of these visited the site a mean of 2.8 times during the month. Average visit length was 4.54 minutes and a mean of 9 pages were viewed.
99 staff members from at least 31 centres (centre not given by 22 respondents) responded to an email requesting feedback. It was not possible to record the response rate as recipients were invited to forward the survey to staff who were aware of the system. Responders included doctors (51%), nurses (27%), and renal IT professionals (11%), secretarial and administrative staff (11%).
Strikingly, staff ratings of the system were as positive as those from patients. 82% felt that it had altered patient care for the better, 0% for the worse. 74% felt that it had improved patients’ confidence in their care. 95% felt that it had no effect on the length of consultations.
In general use of the system, the most frequent reason for contacting system administrators was a forgotten login, followed by contacts to amend demographic information or errors in data shown. These have including correcting contact numbers for patients on the Transplant list, information about drugs prescribed, and observations on clinically important matters such as potassium levels, dialysis adequacy. There were some reports that minor fluctuations in creatinine or eGFR had led to unnecessary concern. There were no reports of generally increased patient anxiety and most units reported reductions in telephone inquiries, but the numbers of telephone calls or other enquiries were not measured formally.