You Publish – We Perish

Stop the Madness

Sometimes I wonder whether the purpose of some cancer research is to beef up biosketches of investigators while contributing to the growth of the medical publishing industry.

Other times I am sure of it.

As a seasoned advocate reviewer for three different breast cancer funding organizations, I’m asked to review the overall impact I believe an application may have on achieving the goal of the particular funding program.  I assess this representing the breast cancer community in total, not my particular medical situation. 

As I read each proposal, I seek answers to questions like these: “So what if this is study funded?  What eventual difference might the research findings make in the lives of patients?”  Sometimes the answers are difficult to find in basic science proposals, but it’s not impossible. 

Each applicant writes what they believe the impact of their study will be if funded and if their hypothesis is correct.  The idea is to make a difference by moving the science ahead in order to one day reduce incidence, improve quality or quantity of live, and/or prevent deaths.  Each program announcement is very clear about the objectives of this section of the application. 

One investigator, who I will call Dr. Nyt (Naïve Yet Truthful), enthusiastically stated in his Impact Statement that if funded, his research would generate two, maybe three manuscripts which would impact his career prospects, and would also put him in a position to get additional funding so he could publish additional studies.

That was the essence of his idea about the overall impact of his work.  That he would publish more articles and further his career.

There is a lot of truth to Dr. Nyt’s comments. 

It’s what many may think, but never write.

If you don’t publish, you don’t keep your job, no less move up.  You don’t Pass Go.  Ever.

Another part of peer review for some funding programs for less experienced scientists, is to review the potential of each applicant to become an independent breast cancer researcher.  During peer review discussion, much energy is put toward questions like these:

For someone at that level, does the fact that they only have four published articles give them a lower rating? 

What if the applicant was first author on all four publications? 

What if the applicant has never been first author, but has been co-author of ten published articles? 

What if the ten articles were published in “low quality” journals?

What if the applicant has only published two articles and is working to get approval on five more? Does that mean they aren’t very productive? 

Little is said about the quality of the contributions the articles may have to scientific progress and how these published articles may eventually influence clinical practice.

The reward system favoring publishing over impact is fraught with long term issues, issues that may have decelerated progress. Focusing on publishable studies may have delayed the groundwork needed to develop new therapies that could extend lives, improve the quality of lives or reduce deaths from breast cancer. The extreme emphasis on publishing may also have discouraged many promising investigators from pursuing a career in the field.

Scientists know this.  In academic settings they play the game because they have to.  It’s the old “publish or perish” — you’re only as good as your last published article, only if it’s accepted by a high-quality journal.  And publishing in any journal is better than not publishing at all.

Over the past six weeks, eight fabulous breast cancer advocates – my friends – have died of metastatic breast cancer.

How many new journals have gone to print over those six weeks?

How many articles have been published? 

How many of those are the career-sustaining articles that will likely go nowhere, except for citations in the next round of articles? 

How many of them end with “in order to know for sure, we need more studies?” 

I fully realize I’m an outsider making observations based on what I see and what I learn about.  In school, I didn’t excel in biology and couldn’t stand following the scientific method.  I’m no expert.

Alone, I have very little power to change anything.  That frustrates me.  People are dying.

Many advocates believe that if we just spent a lot more money on research, we would be closer to ending the death spiral in metastatic breast cancer.  Maybe we could. I’m certainly not against more funding.

But I’m not convinced that by only increasing funding for breast cancer research, we will achieve better outcomes for patients.

There’s more to it than that.

Until we fully examine and change the reward systems for scientists, it will be more difficult to achieve the progress we all want in order to stop our friends and family from dying. 

Let’s stop the madness.

An Open Letter to Breast Cancer Researchers: Are You Building Stairways to Nowhere?

Are You Building Stairways to Nowhere?

Are You Building Stairways to Nowhere?

Dear Scientific Researcher,

What you do is extremely important and provides hope to those like me living with metastatic breast cancer.  The projects you choose, and the collaborations and advances you make, can be vital to ending the set of diseases known as breast cancer, thereby saving thousands of lives in the future.

I have met many of you on various review panels and have sat in the room with you, discussing the strengths and weaknesses of proposed breast cancer studies.  You bring in scientific viewpoints; I bring in the views of the community, particularly the views of the patient advocate.  Sometimes you get wrapped up in the elegance of a specific study and shift uneasily in your seats when I ask:  “So how does this study help us save lives or prevent the disease from happening in the first place?”

I realize how difficult it is to obtain funding for your labs and that some of you have had to dismiss some talented members of your teams due to lack of funding.  I have raised over $50,000 for breast cancer research and have lobbied dozens of times on Capitol Hill to secure your research dollars.   I feel your pain.

I have attended far too many funerals cloaked in pink ribbons.  Inspiring women, creative women, and yes, demanding women and men have suffered and died at the hands of this disease.  Each day, those who call themselves survivors, live with dark clouds over their heads housing thunderbolts of lingering fears that recurrence and death is in the forecast.

When I read funding proposals, it makes me aware how little you really know about curing breast cancer in humans.  You don’t know how many breast cancers start, how to accurately detect breast cancers, why mutations happen, why the immune system ignores these aberrant cells, how cancer cells can survive throughout the body and colonize in new locations, or how some cancer cells resist treatment.  Sure, you know some, but not enough.

We have spent billions of dollars on breast cancer research, from both the public and private sectors.  You have written thousands of peer-reviewed journal articles on the subject.  You have attended and presented at hundreds of breast cancer symposia, costing millions of dollars and thousands of hours.

Securing study funding, publishing papers and presenting findings seems to have become an end unto itself for some of you.  Finding real cures for real people appears to have been lost in the shuffle.

You study signaling pathways that end up worthless as targets for treatments due to the body’s ability to create redundant systems.  You study different dose levels of the same thirty-year-old chemotherapy treatments on lab mice and proudly boast that the new combination extends life a few months.  You repeat unsuccessful research studies because prior scientists failed to produce their findings.  You plunge into nanoparticle technology to find the right shape to fit into cell receptors in order to develop a toxic payload into cancer cells, and discover the keys can’t find the locks.  You study the neighborhood around cancer and try to figure out if that’s what fosters new cancer formation.  You spend years discovering new cellular mechanisms, write about them, and then look for your next project.

All of this:  Yet people keep dying.  At least one has died from breast cancer as you read this letter.

But are you building stairways to nowhere?

What happens after you publish your findings?  When you finish a project what happens next?  How are your results applied to get us any closer to actual treatments or prevention?  How do you hold yourselves accountable to clinicians, patients and the general public?  How can you make it less about “publish or perish” and more about saving lives?  How can you make sure you ask the right questions before starting any new project instead of building a stairway leading to nowhere?

Are you satisfied with your own progress?  How would you feel if someone undergoing treatment looks over your shoulder as you work?  Would you personally go to your friends and family, asking them to donate to the work you are doing right now?  If your own loved-one was diagnosed with breast cancer, what steps would you take to make sure they would not perish from the disease?

These are important things to think about.  I know you work hard.  I work hard at staying alive.  Both jobs are difficult.

What I’m asking you to do is to consider your role in the fight to end breast cancer.  Are you winning or losing?  What can you personally do to ask the right research questions that are not redundant or merely interesting, but are important to finally putting an end to breast cancer?  How can you make sure that your research makes a real difference and foster translation into the clinic?

I’m fighting the battle every day.  Please do what you can to fight with me.  Put an end to building stairways to nowhere.

Sincerely,

Sandra Spivey

Starting out

Since my retirement as a human resource professional in 2008, my life has been filled with cats and cancer. I have been lucky enough to be asked to mentor several people I’ve worked with in the past on career advice and sticky people issues. That has helped keep my mind active.

My grown daughter, Allison, and her tuxedo cat, Bickley, moved back home soon after I retired. Allison and I soon started volunteering at the local animal shelter, cleaning cat cages and playing with cats every Saturday morning.  We adopted cat #2, Tiny Baby Sweetheart Honey Cupcake Sugar Princess Yummy Gumdrop, who proved to be everything but Tiny. Soon after that, we decided to adopt our son’s three-legged cat, Buddy (who my husband Bill now calls Zoom-Zoom due to her adept running skills).  So our lives are filled with floating fur and hair balls. 

In 1995, I was diagnosed with breast cancer and expected to complete treatment and be done with it, as happened to my mom in 1980. My cancer had other ideas and infested my bones in 1998 at age 45. I read where 10% of those with the same disease lived past 3 years. I decided to sign up for that group and am happy to say that my membership application was accepted. 

I’ve had several cancer adventures, from 3 weeks in the hospital for a bone marrow transplant to sitting next to cancer researchers determining the strengths and weaknesses of various breast cancer research proposals.  

So my life is now filled with cats and cancer. The cats provide therapeutic value in dealing with cancer. It’s the perfect mix for a retiree like me.