Data Held Hostage

The Big Data marketing campaign distracts us from our greatest opportunities involving data. As we chase the latest Big Data technologies to increase volume, velocity, and variety (the 3 V’s), we will never resolve the fundamental roadblocks that have been plaguing us all along. I’ve written a great deal over the last few years about the fundamental skills of data sensemaking and communication that are needed to evolve from the Data Age in which we live to the Information Age of our dreams. It is essential that we develop these basic skills, but we must face many other concerns and resolve them as well before collecting more data faster and in greater variety will matter. I recently wrote about one of those concerns in a blog post titled Big Data Disaster about the problems created by credit bureaus that shroud their scoring methodologies in mystery and have largely ignored their responsibility to base credit ratings on accurate data. We have a right to know how these bureaus determine our credit worthiness and we should never be denied opportunities due to data errors that they haven’t seriously attempted to prevent or correct. Today, I want to raise another important concern about data: the suppression of data of interest to the public. I believe in data transparency. Information that concerns us-especially that which can make the difference between health and illness, life and death-should not be held hostage and hidden. This is an ethical issue concerning our use of data. Pharmaceutical companies routinely suppress the results of unfavorable clinical trials. They even make it difficult in many cases to know that those trials were ever conducted. This results not only in a great deal of wasted research to repeatedly find what was already discovered and hidden, but also in lost lives and false hope. This suppression of data should be criminal, but it isn’t. It is, however, deeply wrong.

While teaching my workshop recently in London, one of my students recommended that I read a new book titled Bad Pharma by Ben Goldacre. She did so, she said, because she saw Goldacre and me as similar in our willingness to speak out against wrong. I speak out mostly against data sensemaking technologies that fail to deliver useful functionality, but Goldacre, a medical doctor, is speaking out against a systemic problem in the pharmaceutical industry, which involves regulatory agencies, publications, and academic institutions as well. What he reveals, all based on well-documented facts, is chilling. It is an incredible example of science at its worst.

In the book’s introduction, Goldacre writes:

We like to imagine that medicine is based on evidence and the results of fair tests. In reality, those tests are often profoundly flawed. We like to imagine that doctors are familiar with the research literature, when in reality much of their education is funded by industry. We like to imagine that regulators let only effective drugs onto the market, when in reality their approve hopeless drugs, with data on side effects casually withheld from doctors and patients…

Drugs are tested by people who manufacture them, in poorly designed trials, on hopeless small numbers of weird, unrepresentative patients, and analyzed using techniques which are flawed by design, in such a way that they exaggerate the benefits of treatments. Unsurprisingly, these trials tend to produce results that favour the manufacturer. When trials throw up results that companies don’t like, they are perfectly entitled to hide them from doctors and patients, so we only ever see a distorted picture of any drug’s true effects…

Good science has been perverted on an industrial scale.

Goldacre documents the problem and its effects in great detail and goes on to describe with equal clarity what we can do to correct it.

If we wish to usher in a true information age, we must first develop an ethical approach to data, its dissemination, and use. What Goldacre reveals about the pharmaceutical industry is but one example of data being selfishly and harmfully held hostage by powerful organizations. Problems like this will go unresolved and, in fact, will never even be addressed, if we’re spending all of our time chasing Big Data. First things first; let’s learn to use data responsibly.

Take care,

11 Comments on “Data Held Hostage”


By Colin Michael. March 18th, 2013 at 7:57 am

Pardon my poor attitude, but I don’t know which is a more hopeless cause; trying to get industry and academia to agree on standards for data gathering and use, or trying to educate the majority of alert citizens in the proper use of statistics and data.

By Guy Cuthbert. March 19th, 2013 at 3:29 am

Ben has been on a campaign against Bad Science for some time now (he published a book with that title back in 2008, and has a blog - http://www.badscience.net - on the same theme). He’s a superb advocate for responsible, and sensible, use of data (amongst other things).

By Anders. March 20th, 2013 at 4:53 am

Colin Michael:

The main problem is that data is hidden; negative data from the pharmaceutical industry never gets published and is held back. However, Goldacre have a solution, which may not solve the problem, but it will point out where the problem is, and who’s responsible. He’s started a campaign

I encourage all to check out All the Trials, and to sign the petition.
http://www.alltrials.net/

The list of supporters is already quite impressive, including among them the Royal Society of Medicine, the Cochrane Collaboration and several governmental agencies.

By Stephen Few. March 20th, 2013 at 5:26 am

Colin,

The day when I believe, as you do, that helping people progress in these ways is hopeless is the day that I will end my work and find a place to spend my remaining time in seclusion. Your attitude, although understandably pessimistic, is indeed poor given the need for resolve and action, despite the challenges that we face. Perhaps we don’t need to “educate the majority.” If we can reach even a few, we should do what we can.

By Colin Michael. March 22nd, 2013 at 1:10 pm

Yes, I understand. Like the prophets of old, someone needs to hold the line and stand for what is right in the face of whatever odds. There is a remnant who will stand with you. (Just try to avoid places where there are a lot of stones handy!)

Thank you for keeping me on the path ;)

By George McCarrolle`. March 25th, 2013 at 10:21 am

The main issue with medicine and medical care in the United States is the pursuit of corporate profits. For many years doctors and hospitals have lead consumers down a path of multiple tests to confirm a doctors diagnosis, or numerous procedures, and or medications to solve health issues. The lack of transparency in trial data shouldn’t be a big surprise.

The data is the key, and I applaud Goldacre for trying to expose the truth. I find it very interesting that in the world of big data, the only data most corporations a really interested in deal with purchasing habits.

By grasshopper. March 25th, 2013 at 12:37 pm

I really hate when people make it their goal to ‘hide’ the truth — by biasing the data (selectively not giving you all the data, designing survey questions to get the results they want, etc), or by giving you “too much” data.

Unfortunatly, it seems like people are rewarded for “lying with data”, rather than rewarded for finding the truth in the data.

By Stacey Barr. March 25th, 2013 at 9:33 pm

One area I would love to exercise more influence, in heightening the awareness of the general public of these problems, is in helping people to ask the right questions when they seek a solution for their problems. Doesn’t matter whether these problems are health related or not. Maybe the questions go something like this: What is my problem? What are the possible and likely causes of this problem? What are the solutions recommended to me and how well do they relate to the likely causes? What are the limitations of these solutions, based on who recommends them and who has tried them? No doubt the right questions are different to these, but Steve, you’ve started me thinking…

By Chris Pudney. March 26th, 2013 at 11:30 pm

Stephen,

Thanks for the review. Another book I’ve added to my wish-list that you’ve positively reviewed.

I can also thoroughly recommend Goldacre’s first book “Bad Science”. It provides some jaw-dropping insights into the medical industry.

Regards,
Chris.

By Jacques Warren. April 1st, 2013 at 6:32 am

Very interesting discussion. Regarding how science can be messed up with, I strongly recommend reading “Wrong: Why Experts Keep Failing Us” by David H. Freedman. It is both a fascinating and chilling book.

By Andreas. April 4th, 2013 at 1:17 am

Another book in just the same direction, possibly with even more credibility of the author, is Marcia Angell’s book, “The Truth About the Drug Companies: How They Deceive Us and What to Do About It”.
Marcia Angell was the editor of one of the most renowned medical journals, The New England Journal of Medicine, for some 20 years.

Andreas