Participants were recruited to this study through stroke support charities and the SLSR [22]. In examining the role of the patient portal, we conducted 27 semistructured interviews with 21 stroke survivors and 6 informal carers. Images of the portal prototype were incorporated into the interviews to solicit participants’ views about the portal. Visual representation of the portal was considered the most effective mechanism for the initial perspectives on how they might choose to interact with the portal, with an interactive prototype of the portal subsequently made available for a usability study [14].

In the interview, participants were shown early iterations of the patient portal in the form of screenshots from the login screen (Figure 1), patient dashboard (Figure 2), and self-living ability assessment (Figure 3). The portal prototype displayed health information and data relating to a fictional user, Daniel, a 56-year-old man. During the interviews, we explained how the portal was intended to function, using images to illustrate its various features (eg, self-living ability, well-being assessment). We also discussed with participants that while there was no direct linkage between the SLSR and general practitioner or hospital records, they would, through the portal, have access to information collected routinely as part of the SLSR follow-up; for example, the following were incorporated into the portal through a section called Health Records: medication, Barthel Index (a measure of disability level), Frenchay Activities Index (a measure of activity level), and the 12-item Short-Form survey (SF-12), a measure of health-related quality of life.

At the start of the interview, it was made clear to participants that health care providers would not routinely have access to the data entered in the portal. However, this did emerge within the interviews when discussing education features and the expansion and/or improvement of the prototype portal in the future (see Multimedia Appendices 1 and 2 for a list of features envisioned for the portal). During the interview, participants were asked to reflect on the portal’s design, the relevance of the data being collected and displayed to them personally, and the perceived barriers to engagement. Engaging participants through photographic images fostered an environment that enabled a “holistic” and “multifaceted” understanding, creating meaningful discussion [26].

Reflexive thematic analysis was conducted to account for limitations within the study and to provide clarity on the construction of themes [27]. The research team identified themes about the role digital technologies, such as a portal, can have in assisting and/or enhancing stroke care and recovery. One author (SR-C) read transcripts and conducted initial coding using NVivo 14 (version 14; Lumivero). Initial coding saw the data split into themes; these were then shared with DW and MM to further refine the codes. Once these three authors had met and discussed them, the codes were then shared with a wider team for discussion both analytically and in terms of tangible changes that could be incorporated into the portal design. This enabled the authors to consider how digital technologies could impact physical and emotional recovery and how the portal functioned, alongside raising wider sociological questions about the role digital technologies can play in health management and care.

Ethical consent for this study was obtained through the Health Research Authority and Health and Care Research Wales (research ethics committee reference number 21/WS/0145).  Interviews took place online via Microsoft Teams to ensure that participants were recruited and could share representative stroke experiences in England and Wales. In-person interviews were offered to participants living within the London area or close to research team members. Written consent was obtained from participants before the interview. In accordance with feedback from the project’s Patient and Public Involvement group (PPI), interviews lasted on average between 30 and 40 minutes to avoid participants becoming overly fatigued. All interviews were recorded and transcribed.

During the discussion of the portal prototype, nearly all participants made clear their eagerness to establish an environment in which they felt empowered. To achieve this, stroke survivors and carers required knowledge of stroke, which would allow them to better manage their health in their everyday life. For many participants, the portal played an important role in communicating risk associated with stroke, such as healthy ranges for blood pressure, and when they need to do something:

Like many participants, Hannah reflected on the expectation that she should self-manage her stroke recovery following hospital discharge. Responsibility is placed on stroke survivors to know when and if to seek help, which can cause anxiety and worry. Identifying credible sources of information is a key part of managing this worry and supporting stroke recovery. Digital tools can encourage people to think positively about changes in their health, especially when they know they are receiving information from a reputable source. In several interviews, discussion of the portal prototype prompted stroke survivors and carers to acknowledge the changes that the stroke survivors’ bodies had undergone, and participants said that the portal could offer a foundation on which to manage and plan for long-term recovery:

The portal acted as an intermediary between stroke survivors and carers. Through nonintrusive and supportive of self-management practices, the portal could enable stroke survivors to manage their recovery at a pace more in line with their physical and mental preparedness. Participants indicated that portals should offer support and serve as an extension of health care service provision, thereby creating confidence in self-management of stroke through knowledge and guidance.

Participants described the challenges that individuals experience in navigating the health care system. When asked during the interview, many appeared unclear regarding the resources and opportunities for support available to them. In learning to adjust to their physical impairment, several participants noted that they had become detached from their prior fitness routines and, as such, were no longer fit and were disengaged from recovery. Therefore, they argued that the potential portal offered motivation to engage in recovery:

Participants noted the benefit of the portal in enabling people to stay informed in managing their health and therefore to gain control over their condition. Many were keen to stress how a portal could assist them and those around them in this process. The portal could serve not just as a site of information but as a tool in facilitating self-management. Participants highlighted the potential of a portal to improve well-being by enabling stroke survivors to track progress and recovery more broadly using the self-living ability page (Figure 3):

Recovery is complex, yet the potential to monitor achievements through a portal would help ease several participants’ frustration and tension that arose through their inability to complete tasks they performed easily prior to their stroke. In addressing the invisible effects of stroke (eg, fatigue, emotional lability, depression, anxiety, and cognitive impairment) through monitoring and assessment of health changes, accessing the portal could provide a quick insight or overview of an individual’s health:

These insights raise important questions about the role that digital tools can play in assisting individual rehabilitation following stroke. In engaging with a portal, stroke survivors and carers might attempt to mitigate the negative impact of stroke on their lives, managing their vulnerability and the limitations of their condition.

The role that digital technology can play in the management of health proved daunting for some individuals grappling with the effects of stroke. Some participants felt that digital technology needs to offer resources to encourage engagement, counteracting the hesitancy:

The potential that the portal might add additional responsibilities and concerns was reflected upon by carers:

Emma’s observations of the portal images relating to the Barthel Index score, a 10-item measure of activities of daily living [28], shown graphically on the self-living ability page, served as a reminder that in creating the profile for “Daniel,” the team had depicted a positive recovery trajectory. This also raised the possibility of a potential ceiling effect in the outcome measures used and displayed, in that they may not be sensitive enough to capture gains that are small yet still meaningful to the patient. Moreover, the design of the portal did not assist those with cognitive impairment and therefore placed an expectation and additional burden on the carer to complete in cases of severe disability following a stroke (Figure 3). Many stroke survivors and carers needed a clearer explanation of how the use of digital health technology would prove beneficial. Physical documents were preferred in offering straightforward access to the stroke survivor’s health information and saving additional work in having to ensure information was regularly updated online, crucial when considering caring responsibilities.

Hesitancy was also expressed among younger participants regarding the age of users, with concerns about who the portal was being designed for and how it would help them connect with other young stroke survivors. The portal was not designed to enable social media–type features, but participants under the age of 67 felt that this would be an important element in making the portal successful in engaging and offering relevant and purposeful information for younger stroke survivors, providing a valuable service that other groups sometimes lacked:

Many stroke survivors stated that they had sought wider professional and peer support to assist in their recovery. For stroke survivors, portal technologies are a potential platform on which to build connections, enabling individuals to gain knowledge and share experiences of their condition:

For Caroline, “creating a community,” or a platform through. which she could seek educational resources, would allow her to answer questions in an environment in which she felt supported and understood. In establishing an environment in which stroke survivors could ask and respond to questions, Caroline felt that patient portals could potentially provide collective support by enabling the “creation of a positive” space in what can often feel like a negative environment poststroke.

While we did not raise the possibility of the portal offering connections to educational resources or peers, this suggestion arose when we asked if there was anything else that we might need to consider in the portal design:

A patient portal could potentially ensure that reliable information is available. Awareness of stroke consequences was mentioned as being essential in enabling informal carers, friends, and family to assist in recovery. Participants noted that the portal might aid in reducing feelings of loneliness and isolation experienced by stroke survivors. Digital technologies could act as an intermediary between individuals and their wider networks in communicating the realities of their condition:

Through inclusion and use of patient portals, stroke survivors and carers could create positive, safe, and caring environments in which health problems relating to stroke can be considered. More importantly, they can ensure that their health needs are communicated among family, friends, or individuals who care for them as they learn to adjust to and navigate life poststroke.

This study has both strengths and limitations. One strength is that participants were diverse in terms of time since stroke, ethnicity, and age. Another is that the study highlights the potential of digital interventions in enabling individuals to make informed decisions in relation to their health through access to information about their condition. Moreover, many participants noted the importance of such interventions in recovery, with the portal offering the potential to support stroke survivors and their wider network of support. While we attempted to engage stroke survivors experiencing aphasia, our engagement strategy was limited to interviews that were mostly held online, depending on geographical location, with many participants based in London or the south of England. Good technological ability or high levels of assistance from stroke survivors’ carers were also needed for participants to engage in online interviews. Moreover, we did not engage participants who were not fluent in the English language or who were experiencing severe, disabling complications because of their stroke. Participants might have benefited from the opportunity to directly interact with the portal, rather than being shown a series of photographs to illustrate its function. This decision was made because the portal required further development before undertaking usability and feasibility trials, which will be held at a later stage.

This study raised several questions about who the portal was for, the purpose it served, and who was excluded from using digital technologies. For stroke survivors and carers, the promise of empowerment through digital self-management must be balanced against recognition of the social complexity of chronic illness experiences. Effective portal design requires attention given not only to people’s medical needs but also to the relational contexts and time frame in which recovery occurs. Participants recognized the potential benefits that a patient portal might offer, but further research is needed to determine the effective use of portals over extended periods across various populations.