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Financial Conflicts of Interest Among Authors of Urology Clinical Practice Guidelines (Papers: Austin Carlisle, et al | September 2018)0

Posted by Admin in on October 1, 2018

Recent studies have highlighted the presence of disclosed and undisclosed financial conflicts of interest among authors of clinical practice guidelines.

We sought to determine to what extent urology guideline authors receive and report industry payments in accordance with the Physician Payment Sunshine Act.

Design, setting, and participants
We selected the 13 urology guidelines that were published by the American Urological Association (AUA) after disclosure was mandated by the Physician Payment Sunshine Act. Payments received by guideline authors were searched independently by two investigators using the Open Payments database.

Outcome measures and statistical analysis
Our primary outcome measure was the number of authors receiving payments from industry, stratified by amount thresholds. Our secondary outcome measure was the number of authors with accurate conflict of interest disclosure statements.

Results and limitations
We identified a total of 54 author disclosures. Thirty-two authors (59.3%) received at least one payment from industry. Twenty (37.0%) received >$10 000 and six (11.1%) received >$50 000. Median total payments were $578 (interquartile range $0–19 228). Twenty (37.0%) disclosure statements were inaccurate. Via Dollars for Docs, we identified $74 195.13 paid for drugs and devices directly related to guideline recommendations. We were limited in our ability to determine when authors began working on guideline panels, as this information was not provided, and by the lack of specificity in Dollars for Docs.

Many of the AUA guideline authors received payments from industry, some in excess of $50 000. A significant portion of disclosure statements were inaccurate, indicating a need for more stringent enforcement of the AUA disclosure policy.

Patient summary
Pharmaceutical company payments to doctors have been shown to influence how doctors treat patients. If these doctors are charged with making clinical recommendations to other doctors, in the form of clinical practice guidelines, the issue of industry payments becomes more severe. We found that many urologists on guideline panels receive money from industry and that a significant portion did not disclose all payments received.

Carlisle, A., et al. (2018). “Financial Conflicts of Interest Among Authors of Urology Clinical Practice Guidelines.” European Urology 74(3): 348-354.
Publisher (Open Access):

Privacy in User Research: Can You? – Scholarly Kitchen (Lisa Janicke Hinchliffe | September 2018)0

Posted by Admin in on September 23, 2018

We may live in the age of privacy nihilism but recognizing one’s reality does not have to mean agreeing to do your own work by its terms. This post is for those publishers, academic and research librarians, and others who conduct research on user behavior in library information systems, who — whether for personal and/or professional ethical reasons or policies — want to do so in ways that prioritize privacy.

Situating Myself and Academic Librarianship

This paper will most obviously be of interest to librarien researchers who are reflecting on the ethics of the use of user data. But its discussion will be of interest to anyone interested in research ethics in quality assurance and service delivery where user data is collected. The piece’s discussion about the important differences between privacy, confidentiality and anonymity are likely to be helpful to anyone thinking about the ethical design, conduct and the reporting of human research.

A bit of my own background is probably useful to contextualize this discussion. My own attention to this topic of privacy and user data came into focus when I led the launch of the Value of Academic Libraries Initiative as President of the Association of College and Research Libraries (ACRL) in 2010-2011. Grounded in The Value of Academic Libraries: A Comprehensive Research Review and Report, my work that year and since then has been heavily focused on advocating for the profession to move to evidence-based claims for library value and for the collection and analysis of individual user data in order to do so. This work has been heavily criticized for its focus on collecting user data and, at times, for facilitating the neoliberal transformation of higher education.
Given that, I have also had to confront hard questions about how gathering and analyzing user data aligns with the values of my profession. Specifically, the value of privacy as expressed in the ALA Code of Ethics statement that: “We protect each library user’s right to privacy and confidentiality with respect to information sought or received and resources consulted, borrowed, acquired or transmitted.” These questions have not had easy or straightforward answers, particularly as the value of privacy can be in tension with another principle in the ALA Code of Ethics: “We provide the highest level of service to all library users.” I’m grateful to Andrew Asher who joined me in a series of public presentations exploring these issues (e.g., CNI Fall 2014).

Read the rest of this discussion piece

Australian Code for the Responsible Conduct of Research (2018)0

Posted by Admin in on September 23, 2018

The Australian Code is the Australian national reference for research integrity. The document was issued by the National Health and Medical Research Council, Australian Research Council and Universities Australia.

The Australian Code discusses eight core principles, 13 institutional responsibilities and 16 research responsibilities. At launch it was complemented by the Guide to Managing and Investigating Potential Breaches of the Code, 2018 (the Investigation Guide). Two more guides are expected by the end   of 2018, with the remaining guides expected early 2019.

The eight-page 2018 version is a significant change from the 2007 version (which was 39 pages). It represents a movement away from detailed strict standards on research integrity matters to general principles that must inform institutional policies, processes and resources.

‘Telling our story… Creating our own history’: caregivers’ reasons for participating in an Australian longitudinal study of Indigenous children (Papers: Katherine Ann Thurber, et al | 2018)0

Posted by Admin in on September 20, 2018

Improving the wellbeing of Indigenous populations is an international priority. Robust research conducted with Aboriginal and Torres Strait Islander peoples is key to developing programs and policies to improve health and wellbeing. This paper aims to quantify the extent of participation in a national longitudinal study of Aboriginal and Torres Strait Islander (Indigenous Australian) children, and to understand the reasons why caregivers participate in the study.

This mixed methods study uses data from Wave 6 of Footprints in Time, the Longitudinal Study of Indigenous Children. We conducted descriptive analysis of quantitative variables to characterise the sample and retention rates. We applied conventional content analysis to 160 caregivers’ open-ended responses to the question, ‘Why do you stay in the study?’, identifying themes and overarching meta-themes.

The study has maintained a high retention rate, with 70.4% (n = 1239/1671) of the baseline sample participating in the study’s 6th wave. We identified seven themes related to why participants stay in the study: telling our story, community benefit, satisfaction, tracking Study Child’s progress, study processes, receiving study gifts, and valuing what the study stands for. These related to two meta-themes: reciprocity, and trust and connection. Caregivers reported that participation was associated with benefits for their family and community as well as for the study. They identified specific features of the Footprints in Time study design that built and maintained trust and connection between participants and the study.

Our findings support the assertion that Aboriginal and Torres Strait Islander people want to be involved in research when it is done ‘the right way’. Footprints in Time has successfully recruited and retained the current-largest cohort of Aboriginal and Torres Strait Islander children in Australia through the use of participatory research methodologies, suggesting effective study implementation and processes. Participants indicated ongoing commitment to the study resulting from perceptions of reciprocity and development of trust in the study. Footprints in Time can serve as a successful model of Aboriginal and Torres Strait Islander health research, to promote good research practice and provides lessons for research with other Indigenous populations.

Indigenous population, Longitudinal studies, Research design, Trust, Ethics, Motivation

Thurber, K. A., et al. (2018). “‘Telling our story… Creating our own history’: caregivers’ reasons for participating in an Australian longitudinal study of Indigenous children.” International Journal for Equity in Health 17(1): 143.
Publisher (Open Access):