Improving access to oncology publications for advocates and people with cancer

Abstract

Journal articles provide reliable and current information about cancer research.• This can offer hope to people with cancer and help them make decisions about their care.• Here, the authors suggest ways in which different groups may help people with cancer to find, view, and understand articles.• For example, journals should make articles free to view if they describe research that could change patient care.• Also, clear titles and easy-to-follow summaries or videos may help people to find relevant articles and understand the main findings.• It is important to explore ways to best share research with all those whose lives it may affect.

Patients at the Heart of the Scientific Dialogue: An Industry Perspective

“…Access to PLS with peer-reviewed articles and conference presentations helps overcome the risk of receiving complex or overwhelming information from healthcare providers through other sources; or incomplete, outdated, or inaccurate information from web-sources. It will also address the right of patients to receive accurate information and fulfill their desire to be part of the decisionmaking process for their treatment pathway [13,14]. In fact, the recent 4th edition of the Good Publication Practice (GPP 2022) Guidelines, which are commonly used by the industry to set publication policy, recommends PLS for any clinical trial and other biomedical publications [15].…”

“…Open access (i.e., free readership) of journal articles remains key for patients to be able to read scientific publications. Over the past decade, there have been several initiatives to increase the uptake of open access by publishers, government and/or research sponsors, and the pharmaceutical industry [13,[15][16][17][18][19][20][21][22][23][24][25]. On one hand, several calls and support initiatives have been made by major funding agencies to publish research results in open access journals [13,[26][27][28][29][30].…”

“…Over the past decade, there have been several initiatives to increase the uptake of open access by publishers, government and/or research sponsors, and the pharmaceutical industry [13,[15][16][17][18][19][20][21][22][23][24][25]. On one hand, several calls and support initiatives have been made by major funding agencies to publish research results in open access journals [13,[26][27][28][29][30]. On the other hand, open access fees remain largely unaffordable for unfunded research and the ''obligatory'' open access option in many emerging journals is being met with skepticism of commercial bias and reduced academic quality [13,19,31].…”

“…On one hand, several calls and support initiatives have been made by major funding agencies to publish research results in open access journals [13,[26][27][28][29][30]. On the other hand, open access fees remain largely unaffordable for unfunded research and the ''obligatory'' open access option in many emerging journals is being met with skepticism of commercial bias and reduced academic quality [13,19,31]. In collaboration with industry sponsors, it is essential for professional societies and journal publishers to offer free open access publishing as widely as possible, at least for articles reporting clinical trials likely to impact clinical practice; or to make access to such articles free of charge for nonprofit patient organizations [13,15].…”

“…On the other hand, open access fees remain largely unaffordable for unfunded research and the ''obligatory'' open access option in many emerging journals is being met with skepticism of commercial bias and reduced academic quality [13,19,31]. In collaboration with industry sponsors, it is essential for professional societies and journal publishers to offer free open access publishing as widely as possible, at least for articles reporting clinical trials likely to impact clinical practice; or to make access to such articles free of charge for nonprofit patient organizations [13,15]. Only a few of the first quartile impact factor journals in oncology are fully open access, and these are where most key clinical trials of novel therapies are usually published [13].…”