Medical care and health research are jointly undergoing significant changes brought about by the internet [1-3]. New web portals, apps, and programs are helping to facilitate unprecedented levels of data sharing and collaboration, potentially enabling more precise targeted treatment and rapid research translation [4-6]. Web portals have been a significant part of this emerging web-based health ecosystem, providing patients with a mechanism for accessing electronic health records, managing appointments and prescriptions, and communicating directly with care providers [7]. Much has been written about the technical and ethical challenges associated with the development and integration of web portals into clinical settings [8,9]. However, portal technology might also be used to connect health researchers to clinicians, patients, and the public. Web portals, for example, could be a useful platform for broad and rapid dissemination of research results. Although the most prevalent and widely discussed types of web portals are those used to manage patient interactions with the health care system (so-called patient portals), other potential uses are being increasingly identified.

This study aims to identify one such novel potential use: the adoption of web portals to rapidly share health research findings with clinicians, scientists, and patients. In the era of precision medicine and learning health systems, the translation of research findings into targeted therapies depends on the availability of big data and emerging research results. Web portals may work to promote the availability of novel research, working in tandem with traditional scientific publications and conference proceedings. Web portals raise the possibility that important research findings will be shared efficiently not only with scientists and clinicians but also with patients and members of the public. This study aims to examine how web portals can be used to facilitate such sharing. We seek to preliminarily outline how web portals can be used to advance research sharing objectives and to identify legal and ethical barriers that might challenge these functions. We will distinguish between web portals as a general category, by which we mean web resources that aggregate health information for a specific purpose, and therapeutic portals, by which we mean web portals designed to aggregate health research findings and make them available to a diverse array of researchers, clinicians, and the general public. Therapeutic portals may be contrasted with one prominent type of web portal, the patient portal. This is a system typically used to share individual patient data, facilitate clinical interaction, and record specific health outcomes [10]. For the purposes of this study, we propose the concept of a therapeutic portal in an attempt to capture nuances that are not fully expressed in discussions on the use of web portals for managing and sharing health research findings. In the era of precision medicine and learning health systems, as interactions between clinicians, researchers, and the public take on a unique and pressing character, we are of the view that the language of therapeutic portals better fits the potential emerging use of portal technology in these contexts. Although the distinction between these kinds of web portals is subtle, it has potentially important implications for the provision of care and for the legal and ethical obligations of clinicians in health care systems increasingly modulated by the internet.

Our interest in studying the feasibility of therapeutic portals is motivated by an ongoing multidisciplinary molecular genetics research project to better characterize and categorize the incidences of acute myeloid leukemia (AML) [11]. The Leucegene project is a biobank-based study adopting next-generation sequencing, chemotherapeutics, and precision-medicine approaches for identifying prognostic markers and therapeutic targets for AML [12]. Research in this area, which brings together the efforts of researchers, clinicians who apply novel prognostic testing regimes, and patients who ultimately benefit from AML treatments derived from novel precision-medicine therapies, is fertile ground for exploring the use of internet-mediated tools for widely sharing advancements in the treatment and study of AML. Although using such systems promises to maximize the potential exploitation of new knowledge by making it accessible to as wide an audience as possible, it also raises difficult practical and ethical difficulties.

In this regard, this review aims to explore the potential use of web portals that work to share research results in the context of complex diseases with the research community, clinicians, and patients. In particular, we set out to understand whether such tools are presently in use, how they may be implemented, and how we might account for the pressing policy challenges they raise. This study will help contextualize and support the development of web portals intended to promote information sharing in health care systems by increasingly applying precision-medicine approaches to combat complex diseases. This review examines the potentially expanding scope and utility of web portals and highlights the policy challenges associated with this expansion. This will be achieved by outlining the results of a scoping literature review attempting to ascertain the extent to which web portals have been considered to facilitate communication between researchers and clinicians. Therapeutic portals are internet-enabled tools for sharing information between health researchers conducting basic science research and clinicians implementing best health practices. Tools of this kind expand on the increasing reach of patient portals by broadening their scope of application and inflating their role in patient care. Although there is a sense in which the use of web portals for sharing health research and disease data among clinicians and investigators is a logical extension of the form and function of existing tools that bring together patients and care providers, little direct consideration of such platforms appears to be present in the literature. This review poses 2 questions: (1) Are therapeutic portals being developed and used in health systems? (2) What legal and ethical issues might be raised by the use of therapeutic portals for sharing health research and disease data with researchers, clinicians, and the general public? This study will address these questions in 3 sections. First, we outline the methods used to preliminarily survey the literature in consideration of the questions above. Second, we summarize our results and describe how they apply to the development and use of therapeutic portals. Third, we discuss our findings with a broader literature on web portals and health research dissemination. We also note the limitations of our research and suggest that more work on this topic is needed.

We selected 22 sources for the final review. Of the 719 sources initially obtained, 25 (3%) were eliminated as duplicates and 2 (0.2%) were unavailable in English. This left 96.2% (692/719) of papers for which we conducted a title and abstract review. Of these, we found that a high number primarily outlined work on the adoption of patient portals. Following exclusion criteria 3 above, those sources that did not include discussion about the potential communication of research findings, in addition to patient data such as testing results and treatment plans, were generally determined to fall outside the ambit of this review. We eliminated 93% (671/719) of sources that were determined not to meet the inclusion criteria described above. Operating on a relatively narrow conception of therapeutic portals, we did not expect to find a large number of sources that would meet the inclusion criteria outlined above. Nevertheless, we determined that the 3% (22/719) included sources provide an overview of this emerging field and suggest that the adoption of web portals for sharing research findings will become increasingly prominent in the coming years. This limited overview of the early literature in this space may work to ground subsequent discussions. Figure 1 outlines the steps taken to conduct this review.

The sources retained for the final review were relatively varied in their theoretical and methodological orientations. Several studies, for example, described patient portals enhanced by the inclusion of health data that would not be included in patient charts. One such approach is exhibited in a work by Nordqvist et al [15], who outlined the attitudes of health professionals on a patient portal supplemented with disease-specific information intended to promote adolescent diabetes care. Other articles documented the creation of a novel web portal for safely sharing participant-level data with researchers [16,17] or an open web portal designed to facilitate the sharing of gene association data for lung cancer [18]. Other records included in our final sample mentioned issues surrounding research data sharing somewhat less directly [19]. Following the abstract and title review, we determined that these sources warranted inclusion in the final analysis. Where the precise contours of a proposed or existing portal were not clearly delineated, we erred on the side of the inclusion. This led to the analysis of a number of articles that do not directly contemplate what we have described as therapeutic portals, but that do contemplate use cases to facilitate access to health research findings. We believe that these sources fall under inclusion criteria 2, describing a potential use case for web portals that share research findings or non–patient-specific data among researchers, clinicians, and the public. We explore these themes in greater detail in the Discussion section.

We charted our overarching results in Table 1, which summarizes findings derived from sources reviewed at this final stage and conveys our determination on whether these sources describe tools that could reasonably be considered therapeutic portals. Of the 22 references, we established that 8 (36%) contemplated a web resource to facilitate some form of communication among researchers, patients or the public, and clinicians. The manner in which these resources describe therapeutic portals varies considerably.

Table 2 outlines the general thematic orientations of each of the 8 papers that we determined to have directly contemplated therapeutic portals. Beyond thematic diversity, we also found that reviewed sources considered a wide array of potential policy issues raised by the adoption of web portals in health care, both in the case of therapeutic portals and that of similarly disposed web portals. In particular, we found that 5 legal, ethical, and social issues were raised in the 22 resources we reviewed: (1) privacy and confidentiality, (2) patient health literacy, (3) equity, (4) training, and (5) decision-making. Overall, we determined that out of the 22 resources, 9 (41%) discussed privacy and confidentiality issues, 9 (41%) discussed patients’ health literacy, 4 (18%) discussed equity, 9 (41%) discussed training, and 10 (45%) discussed decision-making. Table 3 outlines the distribution of these dominant policy issues among the reviewed sources.

This review attempts to collect preliminary data concerning proposals to implement therapeutic portals. This research encountered 3 important limitations that should be addressed in future work. First, the search terms employed in this review may not have been maximally targeted to the phenomenon under consideration. The reason for this is that the precise area of research with which we were interested remains relatively gestational and the terminology surrounding web portals that incorporate health research and patient perspectives has not yet been settled. It may also be that a number of therapeutic portals under development have not been described in published articles. This being the case, we hope that it will become increasingly commonplace for scholars and researchers to publish their experiences and perspectives on web portal design and implementation. Second, we did not specifically seek to include gray literature sources in this review. It is highly likely that some sources on therapeutic portals have been communicated outside of traditional academic settings. As our review focused on articles published in peer-reviewed periodicals, we did not assess any potentially pertinent gray literature sources. Future research on this topic should be expanded to include consideration of published works outside of traditional academic settings. Third, this review was limited by language and jurisdiction. Each of the 22 sources we reviewed was published in English and obtained from the English search databases. Moreover, most sources were written by scholars working in North America. These factors likely limited the scope of our search. Future research should explicitly engage with research published in languages other than English and by scholars in a more diverse set of jurisdictions. Despite these limitations, we believe that this study provides a useful overview of the landscape for therapeutic portals, including their specific potential objectives and legal, ethical, and policy challenges they are likely to face.

This paper communicates the findings of a scoping literature review on the potential development and implementation of what we have called therapeutic portals, web systems that facilitate the sharing of health information among researchers, clinicians, patients, and the public. Such portals differ from patient portals in several important respects. First, the role of researchers directly communicating novel findings with clinicians and the public could be significantly enhanced. This approach could help promote the growth of precision medicine as a response to complex diseases. The main aim of this study was to assess the primary legal, ethical, and policy issues associated with the development and use of web portals that facilitate information sharing between researchers, clinicians, patients, and the general public. Our findings indicate that therapeutic portals are a potentially promising but largely underexplored area of study. Of the 22 studies reviewed, 8 (36%) contemplated therapeutic portals were defined. The portals we reviewed took a variety of forms and covered a range of medical issues. The absence of extensive literature on portals that specifically integrate uses from clinical, research, and public settings indicate that such systems have not been implemented on a large scale. We found that developing therapeutic portals would raise a number of important legal, ethical, and social issues, including those surrounding privacy and confidentiality, patient health literacy, equity, training, and decision-making. Each of these considerations should be given careful attention through the implementation of robust policy frameworks for managing the functions of novel portals, especially those that are of a form that has not yet been widely adopted. Further research is critical to better understand the perspectives of clinicians, researchers, patients, and members of the public on the contours of possible therapeutic portals. Although web portals that interface the numerous vital constituents in health research are, in principle, highly promising, any novel system must account for the various legal, ethical, and social challenges that they will present.

It is noteworthy that, although several of the papers included in the final review are several years post publication, those that more recently entered the literature express concern for the same kinds of issues and potential concerns. This indicates that the policy considerations identified here have not yet been fully addressed in policy development over the last decade. This underscores the responsibility for developers of the next generation of web portals to rededicate themselves to the challenge of implementing web tools that account for the serious legal, ethical, and social issues identified in this study.

This review is situated within a broader discussion in the literature on patients and other portals for managing health data and sharing information with patients and the public. The rapidly expanding use of web systems has generally been held out as a success that has contributed to improved outcomes and greater patient empowerment [43,44]. Our results suggest that web portals and systems are a promising mechanism for improving patient engagement, facilitating rapid research translation, and ultimately improving outcomes. There is great promise for portals that explicitly promote the sharing of basic research findings and engage with patients and the broader public. Portals of this kind would need to engage across a varied set of stakeholders with varying needs and levels of expertise. Further policy and empirical research will be necessary to develop strategies that are responsive to the unique challenges that such systems would raise. As web portals become increasingly important mechanisms for sharing health research with clinicians, patients, and the public, it is vital that these developments are met with ethical and conceptual scrutiny. The therapeutic portals presented in this paper may become a more widespread feature of precision and translational medicine. Our findings suggest that web portals are already being used to disseminate research results among clinicians, patients, and the public. However, much of the ethical and conceptual debate is framed in terms of the patient portal, a concept that does not adequately reflect the potentially broader scope of therapeutic portals. It may be useful to clarify this distinction in future research and to underscore the unique ethical, legal, and policy challenges raised when web systems are used as a platform for disseminating research to as wide an audience as possible.