This article presents the results of an exploratory literature review on the potential development and implementation of so-called therapeutic portals, web-based systems that facilitate the exchange of health information between researchers, clinicians, patients and the public. These portals differ from patient portals in several important ways. First, the role of researchers in communicating new findings directly to clinicians and the public could be greatly strengthened. This approach could help promote the growth of precision medicine in response to complex diseases. The main objective of this study was to assess the key legal, ethical and policy issues related to the development and use of web portals that facilitate the exchange of information between researchers, clinicians, patients and the public. Our results suggest that therapeutic portals are a potentially promising but largely underexplored area of research. Of the 22 studies reviewed, 8 (36%) considered therapeutic portals to be defined. The portals we reviewed took a variety of forms and covered a range of medical topics. The lack of abundant literature on portals that specifically integrate clinical, research, and public uses indicates that such systems have not been implemented on a large scale. We found that the development of therapeutic portals would raise a number of important legal, ethical, and social issues, including privacy and confidentiality, patient health literacy, equity, education, and decision-making.
Each of these considerations should be given particular attention by implementing robust policy frameworks to manage the functions of the new portals, especially those that are not yet widely deployed. Further research is crucial to better understand the views of clinicians, researchers, patients and members of the public on the contours of possible therapeutic portals. While web portals linking the many vital players in health research are promising in principle, any new system must take into account the various legal, ethical and social challenges involved. This review shows that web portals are currently used for a variety of functions and in a variety of clinical and research environments. For example, Ling Cai et al [18] described the Lung Cancer Explorer, a database developed by researchers at the University of Texas Southwestern Medical Center. The resource contains genomic expression and clinical data on lung cancer and is open to the public. Although the information on the Lung Cancer Explorer portal is sophisticated technical data, it is freely accessible and can be used by an audience trying to learn more about the genomic dimensions of lung cancer. As the processing of raw genetic data by third parties becomes more common [37], the public can increasingly use portals in the form of Lung Cancer Explorer. The research of Leanne Bowler et al. [22] examined a completely different type of portal, but one that combines clinical and health information and engages the public.
This article describes 6 web portals that provide information on adolescent health and finds that much of the information available is of questionable quality. Two of the studies described portals for genomic data exchange, two described portals for cancer and two for diabetes. Other topics included mental health, adolescent health, and the intersection of health and environment. We found that therapeutic portalsweb-based tools that facilitate the sharing of research findings with clinicians, researchers and patients are an emerging trend in healthcare, although they have not yet received much attention in the literature. When examining the range of legal and ethical issues that may arise from text and data mining practices in academic research, one is struck by the relative lack of literature addressing these issues, as well as the apparent absence of a community- or discipline-generated ethical framework or initiative. It is suggested that while technical expertise in this area is developing rapidly and its potential economic and commercial importance is increasingly recognized, academic researchers in data and text mining would be remiss if they did not seize the opportunity, as other research communities have done, to ensure that the legal and ethical research paradigm in which their institutions seek to evolve adequately reflects the contexts and risks that actually apply to their work. Such misconduct may result in the revocation of articles. Transparent disclosure is important when articles are submitted to journals to explain whether the manuscript or related material has been published or submitted elsewhere so that the publisher can decide how to handle the submission or request further clarification. Further information on acceptable secondary publication can be found in the „Recommendations for the conduct, reporting, editing and publication of scientific work in medical journals“. This study aims to identify such potential for innovative application: the introduction of web portals to quickly share health research results with clinicians, scientists and patients.
In the age of precision medicine and learning health systems, translating research findings into targeted therapies depends on the availability of big data and new research results. Web portals can help promote the availability of new research results by collaborating with traditional scientific publications and conference proceedings. Web portals offer the opportunity for important research results to be effectively shared not only with scientists and clinicians, but also with patients and the public. The objective of this study is to investigate how web portals can be used to facilitate such sharing. We would like to describe in advance how web portals can be used to advance research objectives and identify legal and ethical barriers that could challenge these functions. We distinguish between web portals as a general category, i.e. web resources that aggregate health information for a specific purpose, and therapeutic portals, that is, web portals designed to aggregate health research results and make them available to a wide range of researchers. clinicians and the public.
Therapeutic portals can be compared to an important type of web portal, the patient portal. It 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 to capture nuances that are not fully reflected in discussions about the use of web portals for the management and sharing of health research results. In the age of precision medicine and learning health systems, where interactions between clinicians, researchers and the public are unique and urgent, we believe that the language of therapeutic portals is better suited to the potential use of portal technology in these contexts. While the distinction between these types of web portals is subtle, it has potentially important implications for the delivery of care and for the legal and ethical obligations of clinicians in health systems, which are increasingly modulated by the Internet. Our interest in studying the feasibility of therapeutic portals is motivated by an ongoing multidisciplinary molecular genetics research project aimed at better characterizing and categorizing the incidence of acute myeloid leukemia (AML) [11]. The Leucegene project is a biobank-based study using next-generation sequencing, chemotherapy drugs and precision medicine approaches to identify prognostic markers and therapeutic targets for AML [12]. Research in this area, which brings together the efforts of researchers, clinicians applying new prognostic testing systems, and patients who ultimately benefit from AML treatments derived from advanced precision medicine therapies, provides fertile ground for exploring the use of Internet-mediated tools for the broad exchange of advances in AML treatment and research. While the use of such systems promises to maximize the potential exploitation of new knowledge by making it available to the widest possible audience, it also raises difficult practical and ethical challenges. Plagiarism is the use of published and unpublished ideas or the intellectual property of others without attribution or permission and the presentation as new and original and not derived from an existing source.
[13] Tools such as the similarity test[14] are available to help researchers identify similarities between manuscripts and such checks should be performed prior to submission. [15] Chapter 8 deals with intellectual property issues from the publisher`s perspective. Author publishing agreements, publisher intellectual property policies, and Creative Commons licenses are covered. The chapter focuses on how best to strike a balance between copyright protection and creating flexible re-use rights for readers.