This is the first national project in the UK to offer Internet access to secondary care (hospital) records for a chronic disease, and unusual internationally in giving access to Renal records. Some of our experience in this more than usually results-intense specialty has been similar to other evaluations of patients’ access to records, in that user responses have been strongly positive. Almost all reported studies describe positive benefits for patients’ perceptions and/or empowerment, with no apparent significant negative outcomes[7, 8]. Most are observational studies but a cluster-randomized study in primary care concurred[7, 9].
Profile of users
The small difference in age between users and non-users, and lack of sex difference, are surprising. Health care information is widely sought on the Internet, particularly by patients with chronic diseases[10–12], but most surveys have identified a female preponderance, as also seen in attendances for medical consultation[13, 14].
As in other studies of specific portals as well as more general surveys of healthcare-related Internet use [15–17], our users were younger than non-users, but the difference was relatively small and the age range of users was wide. Internet use continues to rise rapidly in the UK (67% of adults and 61% of households in 2007, rising to 84% and 77% by 2012[18]), and in some units over half of those receiving renal replacement therapy have enrolled, suggesting that potential penetration of the system overall is much higher than achieved at present. This may also suggest that any current differences in usage by different demographics could reduce progressively.
An effect of social disadvantage or income, in which disadvantaged individuals are less likely to look up health information on the Internet, has been mentioned in some previous studies. Lobach et al.[19] found that less education and lower income did not necessarily mean less desire to access records, even where it affected uptake. The reduced educational experience of non-users in our user survey suggests that opportunity or educational achievement may influence uptake, and further investigation of the potential effect of social factors will be important.
Uptake and usage
Looking up health-related information about others on the Internet is common[11 12]. We did not quantitate how many enrolled patients relied on another family member for access to RPV, but a small survey in a single unit (Reading; McGlashan, personal communication) did ask that question. Of 67 patients, 28% allowed someone else to use RPV on their behalf, while 15% of users never used the system themselves and always relied on someone else logging in. Login sharing could be reducing the differences between ages and groups that we might otherwise have observed in RPV users.
Comparison of patient registration numbers with size of dialysis/transplant populations cared for by units suggests that in several units enrolment in this patient group is approaching or in excess of 50%. The relatively high uptake and usage of Renal PatientView may be a consequence of patients having significant long-term disease, or it could be something specific to renal disease. It will be interesting to investigate it further as it suggests that the barriers to using the Internet more widely in this way could be lower than previously feared, if the circumstances are right. ‘Circumstances’ are likely to include the perceived value of the information being shown (or the interactions offered), and the accessibility and usability of the system delivering it.
Uptake between renal units varied widely. The patient survey suggested that even in the enthusiastic early-adopter units that participated in the survey, the main reason patients gave for not enrolling with RPV was lack of awareness of the system. Initially we observed that many staff were cautious about encouraging uptake for fear that it might increase their work, or make their lives more difficult. The staff survey confirmed that this was not their experience, and we predicted that this would gradually lead to wider recommendation. However independent surveys of dialysis and transplant patients undertaken in Scotland in 2009 revealed continuing high levels of unawareness of Renal PatientView, even in units with high levels of patient enrolment. 33-62% of dialysis patients and 60-78% of transplant patients said that they were aware of the system in Scottish units in which it was available[20]. From anecdotal reports, we believe that a significant difference between high-enrolling and low-enrolling units is likely to be the frequency with which it is advocated by staff. Even when there are many posters and leaflets in circulation, patients do not always perceive that it is available to them or that it might be useful for them until it is specifically recommended.
Responses to records access
It is difficult to prove that patient access to records results in improved healthcare outcomes. As the introduction of such a system is generally accompanied by multiple other changes made by enthusiasts this is difficult to study in a well controlled manner. However it has been pointed out that such a demanding proof of effectiveness of online services is not generally felt necessary in other industries where clients/customers benefit from better access, such as banking and travel. There is however some evidence that patient concordance can be improved by access to records [21], and chronic renal disease is an area where adherence to therapy is likely to bring about improved outcomes. Our experience suggests that patient access improved the accuracy of electronic records as patient-directed corrections were common.
It is interesting that some patients enrolled in Renal PatientView despite significant prior concerns about security and confidentiality. Presumably they rated the value of access to their data highly enough to outweigh these concerns. There is evidence from a theoretical examination of how patients would feel about online records that concern reduces as disease burden rises[22]. Both lines of evidence suggest that patients assess their personal risk/benefit ratio.
We were initially concerned that some patients reported ‘I read things that worry me’, but on reflection this is less surprising. Chronic renal disease is a serious, lifelong condition that critically affects the lives of renal patients, and concern about this is likely to be important in explaining why patients want to use the system. If users were not concerned, or considering the possibility of bad news, would the system be so valuable to them?
Our experience with Renal PatientView suggests that it is frequently accessed, valued, has dominantly positive effects, and that such systems can be introduced at low additional cost while requiring minimal extra input from clinicians. It will be interesting to see how far its use can penetrate, and to further characterise what are the barriers to using it.
It would be relatively easy to extend this type of information provision to other specialties with existing electronically held patient data. In the long term, integration with information from primary care records and held by other specialties must be the aim.
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