Thursday, August 11, 2016

Moonshots All Around -- Part II, Data Sharing

. . . continued from Moonshots Part I found in my post previous post.

The White House Office of the Press Secretary released on January 28, 2016 a memorandum outlining the White House Cancer Moonshot Task Force Initiative here. One of the goals, support greater access to new research, data, and computational capabilities, offers hope to those who wish for data sharing between scientists and laboratories to occur more easily. 

Currently, federal law see here says data from most large human trials funded by grants from the National Institutes of Health (NIH) must be reported. Most small NIH grant contracts do not require reporting except for those that involve certain rare diseases. In my investigation of data sharing, I found that for private facilities there are avenues to access data involving an application process. For projects funded with grants at the $500,000 level and above from the National Institutes of Health, guidelines have been in place for data sharing all the way back to 2003.

From the President’s first mention of the Cancer Moonshot Initiative “dozens of new initiatives” have been created. Jo Cavallo, July 25, 2016, explains here and mentions one in particular, The National Cancer Institute (NCI) Genomic Data Commons, which aims “to facilitate access to genomic and clinical data among researchers.” Seems like a good plan, but I wonder . . .

For many of you reading, a discussion about data sharing will most certainly be boring. But you should consider that this will affect every one of you, from the federal taxes (US) you pay to the diagnosis you or a loved one might one day hear.

In my perfect world, data sharing makes logical sense. Progress in science will occur, patients will benefit, and money will be spent efficiently because everyone would have an idea of what the next step is in a particular research area. But my world—our world--is no utopia.

The idea of sharing takes me back to college where, as I worked toward my degree in K-6 education, Cooperative Learning was the buzz. The idea that if you bring different people with differing ideas and knowledge to a group, those ideas can be expanded and improved with input from everyone ultimately producing a better project as a result. Easy, right? But, no.

With any group sharing situation, the ones who work the hardest are not always recognized. A+ work by someone could become B - work or worse for the group. I am not anti-team. I want everyone to work for the same goal—cures for cancers that can be cured and better treatments for a longer better quality life for those that can’t. Team work is how progress is made; however, individual accomplishments not recognized can have the potential to de-incentivize people within the team. Why else do we see most valuable player or employee awards and salary bonuses? Recognition of individuals obviously works.

I agree with David Shaywitz who said in a Forbes article here, “Unfortunately (as one participant observed yesterday), until you can look at each individual researcher, or clinician, or data scientist, and credibly answer their question, “What’s in it for me?” (to share my data), progress is likely to remain slow–a result painfully at odds with the urgency demanded by Biden and deserved by patients.”

I think most humans want to help others despite social media portraying pharmaceutical companies as bad because they only care about profits. But those entities are made up of people, and as I said, I think most care. Please consider why such an assumption that certain companies are greedy and a plight on society might not be true; consider what a researcher might face when it comes to data sharing as they work to see the advancement of science.

As I explained with my example of Cooperative Learning, individuals can become less important than the group. People have an innate desire to be recognized especially when their well-being is tied to it. Although there are some protections in place to prevent theft of scientific information, there are still situations where the hard work of an individual or group can end up in the hands of another individual or group through data sharing especially if it becomes more easily accessed. Some researchers may claim it as their own, though it is not, thus possibly receiving grant money to continue the research leaving the original team with not enough money to continue what they started. Their research stops, the lab receives no public (NIH-National Institutes of Health) funding potentially causing salaries to remain stagnant, promotions stopped, company morale plummets, and profit margins suffer. When profits cease research cannot advance, new equipment cannot be bought, and new employees cannot be hired. The researchers’ well-being and personal satisfaction is jeopardized--or worse their jobs are lost. If everyone faces this same fear, new discoveries will be impacted. 

When the pressure is on to secure grants for research, to get a drug to market, or to protect a company’s investment, what I will call “the fudging effect” could and probably does occur. That is: in the reported data, details may be left out or inaccurate information provided. It is wrong, but as you can see in the above argument, people have a lot at stake that they do not want to lose.  

For me--as someone who wants the newest research as soon as possible--it would make me happy to have access to all research even at its earliest. But, then I think, no, I am wrong about that. Data in many publications is sometimes difficult to comprehend since I am not trained to interpret that data in those documents and it is long, complicated and I might add—boring at times. Plus misinterpretations of medical research already exist. Easier access to data could potentially make this situation worse. Our society has plenty of medical untruths that cause people to believe in preventive measures of diseases, cures and treatments for those diseases that will absolutely not help them. This could become more food for pseudo-science peddlers. I say, let the researchers do their jobs, repeat their research as many times as needed to ensure results are reproducible and accurate signifying a real scientific advancement. Perhaps the attention needs to be directed toward how to overcome mistakes and biases in research, in peer reviews and publications instead of the need for more access.

With the excitement generated about data sharing, I am having dollar signs spinning in my head. Those dollars aren’t going to research either. Data sharing and the computer programs to track and submit data that will be needed, new administrative guidelines, and everyone converting to a new system that will grow from this project will cost a lot of money. Instead of research, money will be used by pharmaceutical companies and researcher laboratories to make sure they are complying with the new rules.  Scientific advancement will be slowed as our government reorganizes and establishes new departments when what may really be needed is some tweaking of what already exist. 

Steven Lewis on Feb 15, 2016 in the Yale News reported here that “Robert Alpern, dean of the Yale School of Medicine, said: "We hear all the time from people outside of science that science is slowed down by the lack of data sharing. Data is shared in science and at just the right time."

And then Carolyn Johnson in her article here in the Washington Post in March of 2016 said this about data sharing: "Despite the considerable lip service that data sharing gets, the researchers behind the JAMA study determined there are relatively few people actually taking advantage of the data."

Perhaps, data sharing is not as much of a problem as the Cancer Moonshot is implying.

Finding money to fund research for all cancers is the real issue.

Maybe, we should all drink a couple of jiggers of a new liquor concoction and call them Moonshots. At least then we will feel good for a little while. The Cancer Moonshot is giving me a headache.



  1. This is an interesting piece, with some articles I hadn't seen. Thanks for the different perspective on data sharing. I wish there were better answers about how to get more money funding the actual research.

    I hope your summer has gone well with a little weight off your mind about your health for the time being.

    Cathy S.

    1. Hi, Cathy, I sincerely appreciate you continuing to read my posts and the thoughtful comments that you leave.
      I, too, wish there was a way to get more money directed toward research. It would be nice, too, if additional money was not taken from taxpayers to do it. Even if the Moonshot Initiative proves to have some positive results, the limited amount of money available means that research for some cancers will not get enough or any funding leaving those advocates and patients feeling let down.
      My summer has been wonderful! I hope to write a post about it soon.
      If you have a blog, please direct me to it. I would love to read your thoughts on the subjects that interest you.
      Thanks again!

    2. Cathy, read this today, Not about data sharing specifically but I feel there is over-lap. The author gives insight into how complex the allocation of govt funds to scientific research is and how the govt directs research. I had no idea the role the Department of Defense has in scientific research including that of breast cancer research. A long read--nevertheless interesting.

    3. I look forward to your post about your summer!
      I don't have a blog. Not only did it never occur to me that anyone would be interested in what I have to say (other than professionally), but I am an intensely private person. For me, it would be analogous to taking all my clothes off and running down 5th Avenue in New York City. I am amazed that people are willing to do it - but I am happy they do, as I have learned much that has helped me deal with (or at least recognize) my own anxieties about cancer. Certainly reading other peoples' opinions helps in clarifying one's own.
      That article was fascinating and highly educating. I had long wondered how DOD got involved in cancer research funding. It was also fairly dispiriting. But I suppose that can be said about much of human activity.

    4. I’m glad you liked the article. I had no idea how extensive the DOD's involvement in scientific research is--quite eye-opening for me.
      I have been a closet want-to-be writer since I was young, but fear of criticism prevented me from writing a lot and when I did write I kept it private. (I have come a long way to even admit that.) Since I probably will never be a published author, this blog has given me the opportunity to write and for people to read what I write. Every time I post something, I am terribly nervous. I worry about how it might expose myself to ridicule so your analogy about taking your clothes off and running down a busy street is definitely a feeling I can relate to. Overtime it has become easier. Most people that take the time to read, do not know me personally giving me a great feeling of freedom. Eyes are on my writing not directly on me. I get to continue hiding behind my computer screen. Participating in a televised conversation though would probably cause me to pass out.
      If you ever decide to start a blog, you could remain anonymous like the Cancer Curmudgeon did for years until recently. Her name is Wendi, and she blogs at if you don’t currently read her blog.
      I hope to have a new post out soon. Was planning for tonight, but not looking too promising.

    5. I do read CC's blog, along with others on which I have seen you comment. I was interested when she finally shared her name...
      I enjoyed your summer trip post!