JMIR Publications

ABSTRACT

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. Clinical Trial: n/a