Sharing the consumer’s path to Cochrane authorship

The story behind two breast cancer advocates becoming Cochrane authors of a widely used review. 

In this reflective piece, Nora Carbine and Liz Lostumbo emphasize the significance of training, camaraderie, sheer persistence, and guidance from leaders in developing their Cochrane review. They delve into their experiences before getting involved in Cochrane and reveal the reasons behind tackling the complex review topic of risk-reducing mastectomy for breast cancer prevention.

Starting with the National Breast Cancer Coalition Project LEAD training session

On October 24, 1995, the National Breast Cancer Coalition, a US organization, held the second-ever session of Project LEAD in Washington, DC. LEAD stands for Leadership, Education, Advocacy and Development.

LEAD is a program developed to train consumers in the science and leadership skills needed to become active, informed breast cancer advocates and to be qualified to have a seat at the table in everything from Institutional Review Boards to helping researchers develop and carry out clinical trials. Nora Carbine and Liz Lostumbo (hereafter referred to as “we”) were attendees at this rigorous program that took place over five days in classes taught by faculty that included eminent scientists. Francis Collins MD, former Director of the US National Institutes of Health, was one of these lecturers.

Moving into Journal Club

One of the founders of LEAD and teachers at this session was Kay Dickerson MD, an epidemiologist at the University of Maryland and an active member of the Cochrane Collaboration. After “graduation”, Dr. Dickerson encouraged a group of the students from the Baltimore/Washington area (including Carbine and Lostumbo) to form a Journal Club. Originally about 10 members, it met once a month in Dr. Dickerson’s office and discussed a single breast cancer research article. At first chosen and circulated by Dr. Dickerson, individual members began to find articles themselves and present to the group. We learned how to discern if the methods of research were rigorous, if the statistics warranted the conclusions, and whether the article was perhaps misleading, such as some newspaper articles can be summarizing scientific research. We went over difficult concepts such as relative risk vs. absolute risk and whether something was statistically significant. We continued the Journal Club for about two years. Eventually, Dr. Dickerson made a proposal to the group – would we be interested in conducting a Cochrane Systematic Review on the efficacy of prophylactic mastectomy?

Beginning a Cochrane systematic review

About seven of us, all breast cancer survivors, thought we were up to the challenge of conducting a review, but one that would be a little different than most reviews. We were interested in making this information available to patients and their doctors as well as showing which treatment might be the most effective. Consumers were our target audience. We wanted the review to help consumers be able to make an informed decision about prophylactic mastectomy knowing the pros and cons of the procedure and to be able to discuss their decision with providers based on that knowledge.

The true challenge was the subject suggested - the effectiveness of prophylactic mastectomy in preventing breast cancer. It was such a big question that tackling it was daunting, but perhaps naively, we thought we, educated breast cancer survivors who were employed full time, (none of us were working in the medical field), could make it happen. After much work and guidance from Dr. Dickerson and Davina Ghersi at Cochrane, we submitted our Protocol to The Cochrane Collaboration, and it was accepted and published on August 30, 2000.

Diving into the review process

With the help of a librarian at the National Library of Medicine, we conducted a literature search that was, it became clear, much too broad, as the search generated a massive number of abstracts to review and subsequently a massive number of articles to print out and review. Each article was read by two members of the review team. Then the whole group would gather at each other’s houses with abundant munchies after work or on a Saturday morning and go through article after article, debating which ones to include in the review and which to exclude. Our discussions were long and detailed as we waded through all our collected information. We had a plethora of surgical articles that we realized we should never have printed out to read. We also realized that we would not find any randomized clinical trials to cite. At a time before widespread use of personal home computers, we also had printed forms to fill out to determine if an article should be accepted or not. We referred often to our mentor Dr. Dickerson of the New England Cochrane Center, and Davina Ghersi and Libby Weir from the Cochrane Breast Cancer Group for their comments and suggestions.

Completing and publishing the Cochrane review

Over time, membership in the group dwindled. One of the original members and driving force, Annette Drummond, became seriously ill with a recurrence of breast cancer, and very close to the end of writing the review, another member bowed out due to conceptual differences. By the date of publication of the final version, only three original members remained as authors. Nonetheless, the first version of the Review was published on August 31, 2004, four years after the Protocol was published.

Returning to update the review

Soon it came time to update the review; we needed the help of staff at Cochrane (Sharon Parker, Melina Willson and Slavica Berber) since we did not have any departmental staff or graduate students to support us locally. We added an experienced reviewer (Jeanette Ezzo) to the group. There were many visits to the National Library of Medicine for updated searches. Three of us took a class sponsored by Cochrane in Baltimore, MD, US, on how to properly use RevMan so that we could conduct the review more efficiently. The second version of our review published on October 7, 2010.

Challenges to completing a third version of the review

With actress Angelina Jolie going public in 2013 about having bilateral prophylactic mastectomies, and DNA testing becoming more available, the procedure was being heavily covered in the popular press. We were concerned, as we began another review update, that women facing the decision about whether to have a prophylactic mastectomy would not have access to current medical evidence about the procedure, just anecdotes in the popular press. With more “information” becoming available on the internet, we were particularly concerned about the lack of discussion concerning quality of life for patients after mastectomy.

With the help of Cochrane, we added Henry Ko, living in Australia, to our author group. Skype made it possible to communicate “face-to-face” despite the 14-hour time difference. With more professional experience than the rest of the group, he became a real asset, while at the same time being very respectful of our ideas. We also updated our wording, changing “prophylactic mastectomy” to “risk-reducing mastectomy”. Kristina Lindsey at the US Cochrane Center helped us update the previous review in RevMan5.

There were strict boundaries for the amount of discussion allowed, which was not what we really wanted. We were supposed to be presenting summaries of high-value studies from which to draw conclusions, but it was clear that some of the studies cited were not well conducted or drew conclusions that were not valid drawn from the information presented. We decided that once the present review was completed and published in 2018, it was time to hand over the reins of updating the review to authors who could break the review into parts that asked more concise questions and produce more high-value conclusions.

And now…

For us, the whole process of being the only group of consumers to take on the responsibility of preparing the review and updating it was one of great satisfaction and pride. We believe our work has helped a myriad of women facing this decision, presenting the information they needed to be well informed to make their choice. We applaud Cochrane for giving us the opportunity and thank all of those named and unnamed who supported us in our endeavor.