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Animal Ethics Biosafety Human Research Ethics Research Integrity

Patient involvement in medical publications – Pharma Times (Michael Pellegrino | January 2021)

Posted by Dr Gary Allen in Human Research Ethics, Research Integrity on February 16, 2021
Keywords: Beneficence, Good practice, Human research ethics, Institutional responsibilities, Journal, Medical research, Protection for participants, Research integrity, Research results

The Linked Original Item was Posted On January 28, 2021

A diverse group of consumers with a smiling woman looking at us

ICON’s Michael Pellegrino outlines research looking at patient involvement in journal review processes

It shouldn’t need to be said, but patients/consumers can make a valuable contribution to medical research and research outputs. This has been increasingly recognised by peak funding bodies and professional associations. This Pharma piece reflects on the role of patients in the review of papers. No-one is better placed for insights into benefits and risks that such participation can bring. From personal experience, it is key that such participants are adequately supported and recognised for their expertise.

A colleague and I independently co-developed a research interest that sought to evaluate patients’ involvement in a particular aspect of medical publications. At that time, there were widespread calls for increased patient involvement across the spectrum of medical communications, drug development and regulatory settings; discussions of ‘patient-centric approaches’ were commonplace – and that’s not to say unwarranted.

Initiatives such as the FDA’s Patient-Focused Drug Development (PFDD) series were underway and pharma companies were beginning to issue patient engagement statements and protocols. In the field of medical publications, the British Medical Journal had put out a call for medical journal editors to actively engage patients in their journal review processes. This was a novel if not daring proposition. We wanted to explore if and how these calls for increased patient involvement had penetrated the field, specifically, journal review processes. We reported at the 2019 meeting of the International Society of Medical Publication Professionals (ISMPP) that most editors across diverse therapy areas did not include patients in peer-reviewed journals’ review processes.

Read the rest of this discussion piece

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A poor call and two missed opportunities, but otherwise not a bad proposed revision to NS s5

How Academic Science Gave Its Soul to the Publishing Industry – Issues in Science and Technology (Mark Neff | January 2020)

Expression of Interest: Consumer Inclusive Research – Consumer Reference Group

We respect you… we just don’t need to hear from you anymore: Should the consumer and their community participate in research as partners instead of just being subjects?

Conducting research with (not on) consumers in health – exploring ethical considerations

Consumer Co-design for End of Life Care Discharge Project

Statement on Consumer and Community Participation in Health and Medical Research (the Statement on Participation) – NHMRC

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