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

2020 ◽  
Author(s):  
Michael Lang ◽  
Sébastien Lemieux ◽  
Josée Hébert ◽  
Guy Sauvageau ◽  
Ma'n H. Zawati
Keyword(s):  
Patient Care ◽  
Health Research ◽  
Complex Disease ◽  
Patient Empowerment ◽  
Patient Portals ◽  
Research Results ◽  
Online Systems ◽  
The Public ◽  
Online Tools ◽  
Research Findings

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

scholarly journals Invited commentary on … Rethinking funding priorities in mental health research

2016 ◽  
Vol 208 (6) ◽  
pp. 510-511 ◽  
Author(s):  
Kamaldeep Bhui
Keyword(s):  
Mental Health ◽  
Decision Making ◽  
Health Research ◽  
Service Provision ◽  
Research Priorities ◽  
Mental Health Research ◽  
Policy Makers ◽  
The Public ◽  
Research Findings ◽  
Economic Perspectives

SummaryThis commentary takes up the notion proposed by Lewis-Fernández and colleagues that we need more balance in research priorities. Specifically, our reliance on neurobiology may be misplaced and likely to be unrewarding unless we ensure that: (a) research with better return for patients and the public is also pursued; (b) research findings are put into practice; and (c) we retain a focus on proportionate investment in service provision. Patient, public and economic perspectives should drive the decision making for better investment, and behaviour change might be better targeted at commissioners and policy makers rather than patients and providers.

scholarly journals Policy in Combating Terrorism Crimes

2019 ◽  
Vol 6 (4) ◽  
pp. 307
Author(s):  
Iwan Sardi ◽  
Amiruddin Amiruddin ◽  
Lalu Parman
Keyword(s):  
Terrorist Organizations ◽  
Research Results ◽  
The Public ◽  
Common Enemy ◽  
Research Findings ◽  
Legislative Policy ◽  
Property Losses ◽  
Legal Policies ◽  
National Preparedness

Terrorism crimes will occur at any time where the target is unpredictable. Its actions cause fear to the public at large, take many lives, and cause property losses. It also has a very broad impact on the life of the nation and state. The research objective is to determine the legislative and applicative policies in combating terrorism crimes. This study uses secondary legal material in the form of official legal materials, books, research results in the form of reports, and opinions from legal experts. Research findings include: 1) legislative policy in combating terrorism crimes is to provide more responsive legal policies to the development of terrorism crimes that ensnare not only perpetrators who commit crimes directly but also investigate parties that collect, provide, or lend funds directly or indirectly with a view to using all or part of it to commit terrorism crimes, terrorist organizations, or terrorists, and 2) the applicative policies in combating terrorism crimes include 3 aspects, namely national preparedness, counter radicalization and deradicalization. This prevention aspect is strengthened by involving all stakeholders and all components of the nation to engage universally in combating terrorism. As a common enemy, cooperation is required to combat terrorism.

scholarly journals Confidence in Local, National, and International Scientists on Climate Change

2020 ◽  
Vol 13 (1) ◽  
pp. 272
Author(s):  
Aaron C. Sparks ◽  
Heather Hodges ◽  
Sarah Oliver ◽  
Eric R. A. N. Smith
Keyword(s):  
Climate Change ◽  
Public Policy ◽  
News Media ◽  
Internet Survey ◽  
Party Affiliation ◽  
The Public ◽  
Research Findings ◽  
Scientific Report ◽  
Media Reports ◽  
Change Beliefs

In many public policy areas, such as climate change, news media reports about scientific research play an important role. In presenting their research, scientists are providing guidance to the public regarding public policy choices. How do people decide which scientists and scientific claims to believe? This is a question we address by drawing on the psychology of persuasion. We propose the hypothesis that people are more likely to believe local scientists than national or international scientists. We test this hypothesis with an experiment embedded in a national Internet survey. Our experiment yielded null findings, showing that people do not discount or ignore research findings on climate change if they come from Europe instead of Washington-based scientists or a leading university in a respondent’s home state. This reinforces evidence that climate change beliefs are relatively stable, based on party affiliation, and not malleable based on the source of the scientific report.

Advocacy for health research means advocacy for patient care

1997 ◽  
Vol 45 (1) ◽  
pp. 44
Author(s):  
Mary Woolley
Keyword(s):  
Patient Care ◽  
Health Research

RESEARCH RESULTS FOR QUALITY SCHOOLING: BRIDGING THE GAP BETWEEN RESEARCH AND PRACTICE

2016 ◽  
pp. 206-214
Author(s):  
Sona Ahuja
Keyword(s):  
School Education ◽  
School Teachers ◽  
School Practices ◽  
Research And Practice ◽  
Research Results ◽  
Academic Practices ◽  
Research Findings ◽  
Major Factors ◽  
Quality In Education

The quest for quality in education has been an avowed goal worldwide. The improvement of quality in school education depends largely on the research conducted in this field. The present study was conducted to know the extent of awareness of school teachers regarding researches conducted in school education and the problems faced by them in using the research results. The findings indicate that the teachers do not use research findings because they are not fully aware about the researches conducted, some of them do not understand the terminology used, while others find it difficult to access as these are printed in scattered form at different places. This study highlights some of the major factors accounting for the gaps that exist between the research and school practices and presents some strategic implementations to bridge this gap. The focus of the study is on getting research-based academic and non-academic practices into the hands of professionals for quality schooling.

scholarly journals Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data

Laws ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. 6 ◽  
Author(s):  
Mark J. Taylor ◽  
Tess Whitton
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Health Research ◽  
Health Data ◽  
Personal Health ◽  
Positive Contribution ◽  
Data Governance ◽  
The Public ◽  
Individual Control ◽  
Data Protection Law

The United Kingdom’s Data Protection Act 2018 introduces a new public interest test applicable to the research processing of personal health data. The need for interpretation and application of this new safeguard creates a further opportunity to craft a health data governance landscape deserving of public trust and confidence. At the minimum, to constitute a positive contribution, the new test must be capable of distinguishing between instances of health research that are in the public interest, from those that are not, in a meaningful, predictable and reproducible manner. In this article, we derive from the literature on theories of public interest a concept of public interest capable of supporting such a test. Its application can defend the position under data protection law that allows a legal route through to processing personal health data for research purposes that does not require individual consent. However, its adoption would also entail that the public interest test in the 2018 Act could only be met if all practicable steps are taken to maximise preservation of individual control over the use of personal health data for research purposes. This would require that consent is sought where practicable and objection respected in almost all circumstances. Importantly, we suggest that an advantage of relying upon this concept of the public interest, to ground the test introduced by the 2018 Act, is that it may work to promote the social legitimacy of data protection legislation and the research processing that it authorises without individual consent (and occasionally in the face of explicit objection).

scholarly journals Challenging Pedagogy: Emotional Disruptions, Young Girls, Parents and Schools

2013 ◽  
Vol 18 (2) ◽  
pp. 214-222 ◽  
Author(s):  
Rosalyn George ◽  
John Clay
Keyword(s):  
Initial Study ◽  
Research Project ◽  
Engaged Pedagogy ◽  
The Public ◽  
Young Girls ◽  
Friendship Groups ◽  
Everyday Practices ◽  
Norms And Values ◽  
Research Findings ◽  
The Uk

This paper follows on from a research project which explored the inclusionary and exclusionary dynamics of young girls’ friendship groups. This initial study received considerable media attention in the UK, Europe and Australia and consequently came to the attention of a wider audience beyond the academy who were thus given an opportunity to engage with the research findings. Having previously explored and analysed the emotionally disabling everyday practices experienced by the girls in the initial research project, the voices of these other adults offered a possibility to explore, examine and analyse the experiences of their daughters and themselves and as a result offered insights that challenge the day to day practices in the classroom. The focus of this paper therefore, is to explore the emotionally raw moments as articulated through the stories told by these adults and to examine what meaning and sense is conveyed about the prevailing norms and values of the school underpinning their pedagogy and practice. We contextualise emotions within a theoretical framework of Sara Ahmed and bell hooks that views emotions in terms of power and culture. The data analysed include contributions from the public to a radio phone-in as well as email responses. The analysis makes explicit the dynamics of power in girls’ friendship groups revealing action/inaction by parents and their accounts about teachers which either disrupt or reinforce dominant practices that pertain. We advocate hooks’ concept of engaged pedagogy to challenge current practices underpinned by neo-liberal assumptions.

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