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Editorial

Our Responsibility to Our Research Participants

Anne Katz
ONF 2017, 44(3), 273-274 DOI: 10.1188/17.ONF.273-274

As the readers of this journal know all too well, conducting a study takes a lot of time, energy, commitment, and, most of all, work. I do not have to list the myriad steps that need to be taken, often with delays in between, to take a study from good idea to analysis. There are often sweat and tears, if not blood, and, at the end of the process, there may be exhaustion. Then the piles of paper and data-rich files languish on a desk or computer, never to see the light of day. Or, perhaps, a manuscript is written and submitted and then rejected or needs extensive revision. And it languishes again. Many of us have been in this position and remember what that rejection felt like and how hard it was to revise and submit again, or not.


As editor of this prestigious journal, I am frequently asked to talk to nurses and graduate students about publishing. Beyond exhorting them to always follow the instructions for authors, query the editor, and edit, edit, edit, I also tell them that if they are doing research, they must do their very best to publish their findings. I gave the same advice to my graduate students, even though I had theoretically more control over them than a room full of strangers. And the reason for this advice is not about their curriculum vitae; although, of course, that is a significant impetus, too.


As the readers of this journal know all too well, conducting a study takes a lot of time, energy, commitment, and, most of all, work. I do not have to list the myriad steps that need to be taken, often with delays in between, to take a study from good idea to analysis. There are often sweat and tears, if not blood, and, at the end of the process, there may be exhaustion. Then the piles of paper and data-rich files languish on a desk or computer, never to see the light of day. Or, perhaps, a manuscript is written and submitted and then rejected or needs extensive revision. And it languishes again. Many of us have been in this position and remember what that rejection felt like and how hard it was to revise and submit again, or not.


What concerns me about this and similar scenarios is what this means to the participants in those studies. As much energy as it takes for a researcher, graduate student, or research assistant to gather the data, it takes even more energy for participants—real, live people—to answer our questions, think about our probes, or complete the many pages of surveys and questionnaires that are, at times, intrusive and, often, boring. If the results of the study are not published, their efforts were in vain.


It takes a great deal of commitment to participate in a study, particularly when you may be feeling ill or exhausted. These individuals often have to let a complete stranger into their home that may not be as clean and tidy as they would like. They may have to answer questions in a hospital bed when all they want to do is rest. The questions we ask may result in upsetting memories of learning of the cancer diagnosis or talking about death. And, of course, some studies require physically invasive procedures that cause pain, no matter how briefly. If the findings of the study are not published, the generosity of the participants will have been offered for nothing. And that is a shame.


I would like to see this commitment to publish as a formal addition to the consent form that we ask participants in our studies to sign. Although, from our perspective, the expectation of publication may be inferred and we refer to the measures we take to preserve anonymity of participants in future articles, making this more formal may serve as a reminder to researchers about our responsibility to participants: above all, do not waste the time and energy of your participants.


Although studies with nonsignificant findings are often not published, I think their dissemination may have merit. If the study was sufficiently powered, the population was heterogeneous enough, and the instruments were appropriate for the research question, then not finding significant differences can inform other researchers that interventions A and/or B may not be worthy of their time and energy in another study. Without the publication of nonsignificant findings, how will we know that intervention A does not make a difference? Of course, many unique factors in patient populations cause us to investigate again and again, but my study may include women aged 18–34 years, and your study may include women aged as old as 40 years. Is this reason enough to do another study with essentially the same population and the same research question? But, given the number of similar studies that I see reported in submitted manuscripts, I have to wonder about whether we should be publishing more of these. I was told long ago by my doctoral supervisor that every manuscript has a home somewhere. I had submitted a manuscript to a journal that shall remain unnamed, and it was rejected. I was very disappointed. But, I took her advice, revised the work, and submitted it to a prestigious journal; it was accepted with just grammatical revisions. I have taken her words to heart and made one small change—every well-written manuscript has a home somewhere.

About the Author(s)

Katz is a clinical nurse specialist at the Manitoba Prostate Centre and a sexuality counselor for the Department of Psychosocial Oncology at CancerCare Manitoba, both in Winnipeg, Manitoba, Canada. Katz can be reached at ONFEditor@ons.org.