Informants in the current study did not express any concern regarding the establishment of a shared patient portal for the region’s health services. They focused most on the value they perceived it would have for patient care. There was, however, variation in opinions about which features that should be made available. This was related to arguments about the possibility of increasing the workload for healthcare providers, causing anxiety and worries as well as inequality among patients, and ensuring that the solution would be interesting enough to adopt. Some argued for making all features available regardless of such concerns, but their views did not prevail in, for instance, the first recommendation on release of test results and provider notes. The leadership of the project sent this recommendation back to the workgroup for further processing because it was not in line with the project’s overarching goal. The patient representatives did not participate in the workgroup from the beginning and the timing of patient involvement in the process was therefore questioned.
No challenges with a shared patient portal?
Potentially, there could have been a disagreement among the informants on whether a shared patient portal would meet the needs of the different services. However, this was not the case. Even when asked directly, informants did not see any particular challenges to establishing a shared patient portal. Rather, it was argued for the value of a patient portal in general regardless of the number of or variations in services using it. The informants’ perception was thus in line with arguments that eHealth tools and patient portals have the potential to help improve care coordination, integrated care and management processes across services [19, 20].
Although establishing a shared patient portal was not perceived as problematic, discussions on the concrete content and features were at times experienced as challenging. This was most evident when some informants talked about what they considered a conflict between the agreed-upon intentions of a patient portal, for example, increasing patient empowerment, and arguments for limiting the features available due to concerns of possible negative consequences for both providers and patients. This was, in particular, related to discussions on which test results and provider notes should be available for patients and when. As it turned out, the leadership in the project turned down the workgroup’s first recommendation because it did not align with the project’s overarching goals on creating a patient-centred solution. As such, the management is in line with the OpenNotes initiative where transparency of information such as provider notes has been described as vital to enabling shared decision making and patient involvement [27].
Does a patient portal lead to more work for the healthcare providers?
Several informants talked about their views on and the discussions in the meetings about the possibility of more work for the healthcare providers if certain features, for example, access for patients to see provider notes and comment on them, were activated. Whether patient portal use increases healthcare providers’ workload has been discussed and investigated by others as well [7]. Some studies have found the workload to increase for some [28], whereas other studies have found patient portal use to decrease workload [6]. A recent study on the clinicians’ experiences of sharing notes with their patients found that some subgroups of clinicians were less enthusiastic than others, but even among these, most of them endorsed the idea of sharing notes and believed it could be helpful for engaging patients more actively in their care [29]. Thus, there does not seem to be a single simple answer whether implementation of a patient portal will affect workloads. This is in line with the variation among the informants in the current study. Some argued that it would increase workload, but others did not, arguing that the number of requests would not increase but rather be moved onto a new platform where they could be handled more efficiently. As there is an association between provider’s engagement and patient portal adoption [9], the expressed concerns about increased workload can nevertheless be usefully addressed to increase the likelihood of a successful patient portal implementation.
Can a patient portal have negative consequences for the patients?
The introduction of patient portals has been linked to patients’ empowerment, activation and involvement [30,31,32] and to contributing to a more active role for patients in decision-making, self-management of health conditions and coordination of health care [5,6,7]. Thus, patient portals can support patient-centred care [33]. Although such benefits were recognised in the study at hand, the informants were concerned whether the patient portal could lead to negative consequences both for the individual patient and for groups of patients.
For instance, some of the informants wanted to limit when and which information was made available to ensure that the information did not cause anxiety and worries among individual patients. Other studies have found both that patient portals can reduce patients’ anxiety within chronic care management [7] as well as create anxiety among admitted patients [8]. A recent Dutch study on real-time access to EHR information via a patient portal found some, yet few, examples of unwanted consequences with confused and anxious patients related to release of test results and clinical reports [34]. Similarly, a study on patients’ experiences of reading their clinicians’ notes reported that, overall, patients understood and found the notes useful, regardless of whether they were written by a general practitioner or a specialist [35]. This, and findings from other studies [13, 14, 36], supports the views of the informants in this study who were in favour of patient access to notes and test results, arguing that patients themselves know what is best for them and therefore should be the ones to decide whether and when they will access their EHR information. However, because the study was done in an early phase of the project, it is possible that, with time, the views on sharing information will change.
Another concern was about whether the patient portal would increase inequality, for example, that the patient portal would be most useful for the digitally competent and resourceful patients, especially if too many features were available so that it became complex to use. There are indications that persons with limited health literacy are less likely to use patient portals [37]. A recent review on the role of patient portals found that it can increase a digital divide between patients and emphasised the importance of addressing health equity when implementing and adopting patient portals [38]. However, none of these studies reported on a connection between equity and number of features but focussed more on the user-friendliness of the solutions.
Patient representatives from the beginning
Including all involved stakeholders and partners in eHealth projects is highly recommended [39,40,41] because it can ensure that the designed solution corresponds to the needs expressed by its future users [9, 11]. Nevertheless, projects involving eHealth can be challenging due to issues such as introduction of new forms of cooperation and participation of a high number of stakeholders [3, 41]. In the current study, the informants talked about the value of patient representation to ensure that the end users arguments and perspectives were included in the discussions. This is in line with the literature on the usefulness and necessity of including patient representatives in health service development [42]. Nevertheless, the informants said that patient representatives were included after the work had begun and that this was related to the overall organisation of patient involvement in the project. Still, some informants found this difficult to understand, as their view was that patient representatives were especially important when setting up the patient portal as they advocated a perspective other did not necessarily have. However, for the later phases of the configuration the patient representatives were included on the same level as representatives from the healthcare services.
Strengths and limitations
Strengths of the study are the novelty in exploration of experiences with the process of setting up a shared patient portal for primary and specialist health services, that informants had various previous experiences on the topic and that the interviews were conducted over time, which means that experiences from different perspectives and stages were covered. However, there are some noteworthy limitations. A main, but intended limitation, was that this study covered a limited part of the work with the patient portal and did not include the testing and building phase of the configuration or the actual use of the portal. The data collection was done in, and thus mirrors, an early phase of the configuration process. It is possible that at a later phase, the findings would have been different. Still, the data collection provided data to answer the study’s aim. The sampling strategy could have led to a biased sample as the informants were initially identified by the Helseplattformen’s management. Nevertheless, the sample showed variations as planned.
