The topic of participatory health technologies experienced a slightly increasing trend across the publication years, with most papers being published in the past 2 years of the review period (Figure 2). The papers originated from the United States (15/34, 44%), Norway (7/34, 21%), and China (2/34, 6%), and a single (1/34, 3%) paper each from the following countries: Canada, Denmark, Sweden, the United Kingdom, the Netherlands, Germany, Austria, Switzerland, Spain, and South Korea. They were published in 21 journals, most commonly the Journal of Medical Internet Research (5/34, 15%), JMIR mHealth and uHealth (5/34, 15%), Telemedicine and eHealth (3/34, 9%), and the International Journal of Medical Informatics (3/34, 9%).

The studies were conducted in primary care (18/32, 56%), secondary care (18/32, 56%), and tertiary care (7/32, 22%; Table 2). Approximately one-third (10/32, 31%) of the studies were set across levels of care, and some (3/32, 9%) additionally involved home care, social services, or school health services. Most studies addressed diabetes (8/32, 24%), followed by cardiovascular disease (6/32, 19%). The participatory health technologies were deployed almost exclusively as web applications or websites for health care professionals, whereas mobile deployment was common for patient users (14/32, 44%). In some studies, participatory health technologies were integrated into electronic health record systems or personal health records [32-38]. In addition to interactions between patients and health care professionals, participatory health technologies supported collaboration with allied professionals [33,34,36,39] or technical staff [40,41]. Caregivers were identified as users in some studies in which the patients were children [37,42-45], cognitively impaired [46], or in palliative care [47]. We identified 3% (1/32) of studies in which patients who did not meet these criteria had the option to invite their families and friends to be users of participatory health technology [48].

Of the 32 studies, 13 (41%) were effect studies of participatory health technology use in clinical practice, 8 (25%) were feasibility studies, 7 (22%) explored user experiences, and 4 (13%) reported on the design and implementation of participatory health technologies (Table 3). The study designs included randomized clinical trials (11/32, 34%), quantitative evaluations (8/32, 25%), qualitative evaluations (7/32, 22%), and mixed methods evaluations (6/32, 19%). Of the 32 studies, the sample size was as high as 50 in 11 (34%) studies, 50 to 200 in 14 (44%) studies, and >200 in 7 (22%) studies. The studies evaluated the effects of participatory health technologies on clinical outcomes, including health, well-being, quality of life (17/32, 53%), user experiences (12/32, 38%), and self-management (7/32, 22%). Approximately one-third (12/32, 38%) of studies evaluated effects on partnerships by describing the content, experiences, and nature of collaboration [39,48,51,56]; the distribution of tasks and responsibilities [42]; patient-professional relationships [51,54]; engagements of patients and family caregivers [41,45,46]; and the perceived quality of collaborations [45,46]. Other effects that were evaluated included access to care and waiting times [49], continuity of care [47], and health care costs [34,52]. Most studies reported positive outcomes (22/32, 69%), although they were minor or temporary in some cases [35,62]. A few studies reported mixed results (5/32, 15%) or no change (3/32, 9%).

We identified six main participatory health technology features for enabling partnerships between patients and health care professionals: (1) communication, (2) self-monitoring, (3) tailored self-care support, (4) self-care education, (5) care planning, and (6) community forum (Table 4). Most studies described a combination of these features, often involving the first 3 (Figure 3 [32-65]). In the following sections, we describe the 6 features and their influences on patient-professional partnerships that were discussed in the studies.

Support for patient-professional communication was a central participatory health technology feature described in 84% (27/32) of studies. Most commonly, communication was facilitated through asynchronous text-based information exchanges between users; however, some studies also implemented audio- or video-based communication. In some studies, team-based communication between multiple users (including patients, caregivers, care team members, and allied health professionals) was also supported, enabling patients and caregivers to communicate with multiple care team members and care team members to interact with each other [46,47,49]. This communication feature contributed to rapport building [40] and improved patient-professional relationships among young and adult patients [44,54,60]. In a study of teenagers living with asthma, health care professionals reported that written communication could lead to more honest and elaborate responses among patients who may be less talkative in face-to-face encounters [54]. Meanwhile, a study that evaluated e-consultations for diabetes self-management support found that asynchronous communication could make patient-nurse relationships more fragile because of the risk of misunderstandings, suggesting that the best option may be a combination of written and face-to-face interactions [51]. Most studies did not describe any constraints in content, time, or word limits for message exchanges. Although one of the studies reported that health care professionals did not experience answering messages as too time consuming [63], other studies reported that tighter communication and follow-up of patients led to greater workloads for health care professionals between consultations [44] and could blur the boundaries between their private and work lives [56]. Various engagements with participatory health technologies among health care professionals and patients led to frustration when expectations were not met, for example, when messages were not answered [42,56].

Self-monitoring was also a central feature found in nearly all studies (27/32, 84%). It comprised the use of self-measurement devices to register and report health data, such as blood pressures [33,34,36,61,64], blood glucose levels [35,53,57,64,65], or physical activity [36,52]; self-assessments of symptoms or problems; self-reported health statuses or activities; self-reported medication adherence or side effects; and diaries for personal notes. When health parameters were not measured using external devices, self-monitoring was mostly facilitated through structured data input based on predefined forms. Several benefits regarding patient-provider partnerships were identified: increased patient motivation [50,59], higher perceptions of being recognized and respected by health care professionals [48], and more efficient consultations because of less time being spent on collecting and explaining data [44]. By providing contextual information and their own interpretations of self-monitored data, patients could participate as diagnostic agents in clinical assessments [39].

The features for providing tailored self-care support were identified in 78% (25/32) of studies. This entailed support for setting and monitoring the progression toward personalized goals, medication management (eg, personal medication lists and managing refills), individual feedback, tailored recommendations, and alerts and reminders. Health care professionals provided individual feedback to patients on the basis of clinical variables or reported self-assessments and reflections [35,50,51,55,64]. In addition to feedback, tailored recommendations were often provided regarding therapy adjustments, symptom management, self-management activities, self-monitoring, and topics to discuss with clinicians. Recommendations were either automatically generated based on patients’ reported data [37,43-45,52,62,63] or individually tailored by health care professionals [34,35,49,57]. The provision of feedback contributed to the development of good relationships and made patients feel understood and addressed, although feedback could also be experienced as challenging for patients [50]. Motivational messages could be both appreciated and experienced as annoying [44]. Alerts were provided to draw attention to patients and health care professionals, generally based on predefined threshold values for clinical parameters [32,36,45,60,64]. In some cases, alerts were also used to inform health care professionals about patients’ activities or engagement with participatory health technologies [42,52]. Reminders were used to support medication adherence [41], prompt patients to upload self-monitoring data [37,57,58,64], or remind them of clinical examinations or appointments [38].

Features for providing self-care education were described in almost two-thirds of the studies (20/32, 62%). Educational material was integrated into the participatory health technologies or provided through links to external sources and often covered both disease-specific information and lifestyle topics, such as nutrition, health and wellness, or smoking cessation [41,43,44,60]. Where educational material was embedded in participatory health technology, contents could be adapted specifically to the target group. For example, in a study of patients with diabetes [53], educational material was adapted to be culturally appropriate to the target group of native communities. Self-care education was sometimes delivered through video clips [35,37,54,61] or could include a toolbox of resources, such as recommended activities, good-to-know texts, and workbooks [56]. Several studies reported improvements in self-management knowledge and self-efficacy [32,43,44,60].

Approximately one-third (11/32, 34%) of the studies described features for participatory health technology–supported care planning. This involved access to planned activities or personal health plans and support for scheduling appointments or planning care visits. In preparation for care visits, patients had opportunities to identify goals, questions, or problems to discuss with their clinicians and provide information about their disease activity by filling in structured data forms [45,58,60]. A study of pediatric patients [45] found that visits and collaborations improved through this preparation. Another study identified shifts in roles and sometimes power transitions from health care professionals to patients and caregivers as they took more responsibility for care planning [42].

Web-based community forums for peer-to-peer interactions with other patients were provided in some studies (7/32, 22%). This functionality appeared in studies published in 2013 or later and only in participatory health technologies that had several other features as well. In most cases (5/7, 71%), the community forums enabled patients to write questions and comments anonymously to protect their integrity. In 43% (3/7) of studies, community forums were monitored by health care professionals who could contribute with answers to posted questions. In a community mental care setting, it was reported that peer support initially established through an anonymous community forum could develop into friendships when combined with café gatherings where service users could meet in real life [56]. Several studies found that patients would visit the web-based community forums to read others’ posts more often than to post something themselves [41,56,62].

Overall, our findings are in line with previous studies indicating that the use of eHealth interventions can positively influence patient-professional communication and relationships [20] and also challenge these because of undefined or changed roles [66]. As a previous review has shown [20], the positive influences of participatory health technologies on patient-professional relationships depend on participating actors who meet the expectations and rules of minimal engagement. This was clearly seen in some studies in mental care [42,56], where variation in patient or professional engagement with participatory health technologies could lead to either enhanced or challenged relationships. One of these studies highlighted that health care professionals may need to communicate their personal boundaries to patients; for example, they would only check messages on certain weekdays [56]. However, these kinds of social interaction norms have rarely been made explicit in studies where asynchronous interactions were not structured or constrained, which could lead to a blurring of the boundaries that define the contents, extents, and times of interactions [67,68]. The ethical implications of digital patient-professional communication can be complex and require organizational guidelines to promote good practices in the use of digital communication [67]. Role uncertainty may affect both staff and patients [69], suggesting that the introduction of participatory health technology features that enable unlimited asynchronous interactions or task shifting (eg, the patient takes on tasks traditionally performed by health care professionals) should also involve mutual agreements on the distribution of tasks, roles, and responsibilities between patients and professionals.

In addition to communication support, the most common participatory health technology features we identified were self-monitoring and tailored self-care support, which is comparable with the results of a recent scoping review focusing on the features of web portals for telerehabilitation [70]. These 3 features were often combined, and they have the potential to profoundly influence the nature of collaborative work among patients, caregivers, and health care professionals. Through self-monitoring and self-care, patients take over tasks that were previously performed by health care staff (eg, measuring of vital parameters) or not performed at all (eg, continuous collection of health parameters between consultations). As described in one of the papers in our review [44], patients’ self-monitoring also influenced the work of health care professionals in several ways. Consultations could become more efficient as data were collected in real time and made available to both patients and health care professionals before consultations. In contrast, health care professionals had to spend more time between visits responding to questions or providing feedback to their patients (ie, communication and tailored self-care support). This indicates that health care professionals’ workloads may increase in some areas but decrease in others, with implications for how their work is organized. Workloads, workflow disruptions, and alignment with clinical processes are among the most common barriers to the adoption of eHealth services [66]. Another study found that when patients’ transmission of data replaced physical meetings, the patients could become passively disengaged, resulting in poorer collaborations [39]. Enabling patients to provide contextual information in addition to automated self-measurements contributed to reintroducing them as collaborative partners in diagnostic interpretation; however, the authors questioned whether this could really be labeled as collaboration or merely the transmission of more data. This study clearly problematized the potential issues when self-monitoring merely replaced previous collaborative work. When self-measured data are not interpreted in collaboration with the patient, the partnership may be harmed rather than improved.

Features for care planning provided another example in which the nature of collaborative work could change. For example, care planning enabled patients to influence the agenda for care visits by communicating their personal goals and the questions they wanted to address. One of the studies described a power transition, as patients took more responsibility for their care plans [42]. Altogether, these findings emphasize that the potential implications of participatory health technologies on the nature of collaborative work need to be carefully considered when introducing eHealth services that influence the work of patients and health care professionals in chronic care management.

With the rise of web-based technologies, referred to as Web 2.0, and similarly, Medicine 2.0, the terms intermediation, disintermediation, and apomediation were introduced [71,72]. Intermediation refers to the selection and delivery of “relevant” health information by an intermediary (eg, health care professionals or a web portal vetted by experts). For example, self-care education and self-care support features that were quite common in this review may be understood as methods of intermediation. By providing patients with relevant self-care information, health care professionals can shift away from the paternalistic model of physician-patient relationships to an interpretive model, where they take on roles as counselors or advisers in individuals’ self-care [73]. The provision of self-care education was associated with increased knowledge and self-efficacy, which are resources that individuals can draw on to build their capacities for self-management [74]. It has been suggested that the more knowledgeable and self-efficacious patients become, the less they want to rely on experts (ie, disintermediation), preferring guidance from peers who “stand by” rather than “in between” patients and the knowledge they seek (ie, apomediation) [71]. An example of apomediation is web-based social health networks, which have been integrated as components in the eHealth-enhanced CCM [75]. Although web-based communities marked the beginning of participatory health informatics [16], the integration of social networking features in participatory health technologies intended for patient-professional interactions emerged as a new trend in this study. Our results illustrate that the 3 different types of participatory health technologies that have been previously distinguished (ie, Web 2.0, self-care support, and tools supporting health care provision) are being increasingly combined in multimodal services. This suggests that participatory health technologies may indeed enable a shift toward a more collaborative and networked approach to participatory medicine beyond the patient-professional dyad. We have identified several features to support partnerships in chronic care management; however, the processes of how patient knowledge is shaped and integrated in shared decision-making are still poorly characterized [76]. Future research may reveal how knowledge from web-based health communities, patients, caregivers, and health care professionals can be effectively combined to support patients in their individual self-care and drive quality improvement and collective organizational learning.