Introduction of a web portal for an Individual Health Management and observational health data sciences

Melchart, Dieter; Eustachi, Axel; Gronwald, Stephan; Wühr, Erich; Wifling, Kristina; Bachmeier, Beatrice E.

doi:10.2147/prom.s157410

Cited by 4 publications

(8 citation statements)

References 42 publications

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“…Issues of privacy and confidentiality are likely to be important considerations wherever sensitive health data are processed or shared [ 17 ], including the case of therapeutic portals. With this in view, Melchart et al [ 31 ] stress the important role project governance and strong privacy protection principles can play in advancing health research. The overall treatment of privacy and confidentiality issues in the reviewed sources helps to underscore the consensus in the literature that personal information must be carefully safeguarded, especially when such information interacts with internet-enabled tools.…”

Section: Discussionmentioning

confidence: 99%

Legal and Ethical Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: Scoping Literature Review

Lang¹,

Lemieux²,

Sauvageau³

et al. 2021

J Med Internet Res

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Background This study aims to identify a novel potential use for web portals in health care and health research: their adoption for the purposes of rapidly sharing 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. Objective This study aims to assess the potential use of web portals, which facilitate the sharing of health research findings among researchers, clinicians, patients, and the public. It also summarizes the potential legal, ethical, and policy implications associated with such tools for public use and in the management of patient care for complex diseases. Methods This study broadly adopts the methods for scoping literature reviews outlined by Arskey and O’Malley in 2005. Raised by the integration of web portals into patient care for complex diseases, we systematically searched 3 databases, PubMed, Scopus, and WestLaw Next, for sources describing web portals for sharing health research findings among clinicians, researchers, and patients and their associated legal, ethical, and policy challenges. Of the 719 candidate source citations, 22 were retained for the review. Results We found varied and inconsistent treatment of web portals for sharing health research findings among clinicians, researchers, and patients. Although the literature supports the view that portals of this kind are potentially highly promising, they remain novel and are not yet widely adopted. We also found a wide range of discussions on the legal, ethical, and policy issues related to the use of web portals to share research data. Conclusions We identified 5 important legal and ethical challenges: privacy and confidentiality, patient health literacy, equity, training, and decision-making. We contend that each of these has meaningful implications for the increased integration of web portals into clinical care.

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Section: Discussionmentioning

confidence: 99%

Legal and Ethical Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: Scoping Literature Review

Lang¹,

Lemieux²,

Sauvageau³

et al. 2021

J Med Internet Res

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“…The data analysis of this outcome study was based on an ongoing comprehensive documentation system called VITERIO [15]. Briefly, VITERIO is a web-based health portal useful in clinical practice for assessing response to interventions.…”

Section: Methodsmentioning

confidence: 99%

“…In detail, a unique feature of our treatment approach is the use of a comprehensive, web-based health-maintenance program [15,26]. Even prior to admission, patients receive access to this program and are encouraged to take advantage of its many features and components.…”

Section: Methodsmentioning

confidence: 99%

“…Social-demographic data, such as year of birth, sex, ICD-10-diagnoses, and the ICD-10-Symptom-Rating (ISR), were collected through the web-based tool VITERIO [15]. ISR data were collected at admission, discharge, and 6 months after discharge (follow-up).…”

Section: Methodsmentioning

confidence: 99%

“…Due to the individual symptoms and signs of psychosomatic patients, tools to evaluate and measure distress, well-being, and symptom load are highly valuable in psychosomatic medicine. The method of patient-reported outcomes (PROs), which includes any report directly from patients about how they feel in relation to a therapy, is well established as a psychosomatic tool [15,16]. The (International Statistical Classification of Diseases) ICD-10 Symptom Rating (ISR), is an economic self-assessment instrument regarding both resources and time and can be employed to record psychological symptoms and to standardize ICD-10 diagnosis [17].…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Multimodal Treatment of Patients with Mental Symptom Load: A Pre–Post Comparison

Melchart

Fischer

Dai

et al. 2019

JCM

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The Traditional Chinese Medicine (TCM) Hospital in Bad Kötzting, Germany, is treating chronically ill patients, covering a broad range of indications. The aim of this study was to prove the efficacy of a multimodal intervention combining mainstream medicine with TCM treatments on the severity of psychopathological symptoms. Out of 966 patients with chronic psychosomatic disease treated 2017 at the TCM Hospital, we selected 759 patients according to specific criteria and analyzed the outcomes after multimodal intervention. The patients completed a validated questionnaire (International Statistical Classification of Diseases (ICD) Symptom-Rating-(ISR)) at admission, discharge, and follow-up. The most frequent ICD-10 diagnoses were “diseases of the musculoskeletal system and connective tissue” (28.5%), “mental and behavioral disorders” (23.7%), and “diseases of the nervous system” (13.8%). Regarding ISR symptom load, “depressive syndrome” and “anxiety syndrome” were the leading burdens showing remissions of about 40%–60% with moderate (0.588) to strong (1.115) effect sizes (Cohen’s d) after treatment. ISR total scores at discharge and follow-up were remarkably lower after intervention (0.64 and 0.75, respectively) compared to 1.02 at admission with moderate to strong effect sizes (0.512–0.815). These findings indicate a clinically relevant relief from mental symptom load after intervention with lasting clinical effects for at least six months.

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Legal and Ethical Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: Scoping Literature Review (Preprint)

Lang¹,

Lemieux²,

Sauvageau³

et al. 2020

Preprint

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BACKGROUND Medical care and health research are jointly undergoing significant changes brought about by the Internet [1,2,3]. New online tools, apps, and programs are helping to facilitate unprecedented levels of data sharing and collaboration, potentially enabling more precisely targeted treatment and rapid research translation [4,5,6]. Patient portals have been a significant part of this emerging online health ecosystem, providing patients a mechanism for accessing electronic health records, managing appointments and prescriptions, even communicating directly with care providers [7]. Much has been written about the technical and ethical challenges associated with the development and integration of patient portals into the clinic [8,9]. But portal technology might also be used to connect health researchers to clinicians, patients, and the public. Online systems could be a useful platform for broadly and rapidly disseminating research results while also promoting patient empowerment. OBJECTIVE The aim of this study is to assess the potential use of online portals that facilitate the sharing of health research findings among researchers, clinicians, patients, and the public. It will also summarize the potential legal, ethical, and policy implications associated with such tools for public use and in the management of patient care for complex disease. METHODS We systematically consulted three databases, PubMed, Scopus, and WestLaw Next for sources describing online portals for sharing health research findings among clinicians, researchers, and patients and their associated legal, ethical, and policy challenges. raised by the integration of online tools into patient care for complex disease. Of 719 source citations, we retained 22 for review. RESULTS We found a varied and inconsistent treatment of online portals for sharing health research findings among clinicians, researchers, and patients. While the literature supports the view that portals of this kind are potentially highly promising, they remain novel and are not yet being widely adopted. We also found a wide-ranging discussion on the legal, ethical, and policy issues related to the use of online tools for sharing research data. We identified five important policy challenges: privacy & confidentiality, health literacy & patient empowerment, equity, training, and decision making. Each of these, we contend, have meaningful implications for the increased integration of online tools into clinical care. CONCLUSIONS As online tools 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. Therapeutic portals as they are presented in this paper may become a more widespread feature of precision and translational medicine. Our findings suggest that online portals are already being used to disseminate research results among clinicians, patients, and the public. But 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 online systems are used as a platform for disseminating research to as wide an audience as possible. CLINICALTRIAL n/a

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Introduction of a web portal for an Individual Health Management and observational health data sciences

Cited by 4 publications

References 42 publications

Legal and Ethical Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: Scoping Literature Review

Legal and Ethical Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: Scoping Literature Review

Multimodal Treatment of Patients with Mental Symptom Load: A Pre–Post Comparison

Legal and Ethical Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: Scoping Literature Review (Preprint)

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