“Statistics should be the intellectual sidewalks of a society, and people should be able to build businesses and operate on the side of them”
This quote from Hans Rosling is part of a speech where he presented the following:
Database-hugging disorder (Dbhd): A well known ailment, Dbhd is the statisticians’ tendency to guard their data because of concerns about budgets or misinterpretation.
This definition should of course be broadened.
Data-Hugging Disorder: A well known ailment of the medical professions, DHD is a strong tendency to guard the data collected from the rightful owners (the patients) because of various control issues.
Please join me in calling for a total ban on data-hugging disorder on the part of all the various professionals involved in the healthcare provision chain, including doctors, hospitals, pharmacists, test labs and insurance companies. Your life, or the life of a loved one, may depend on having immediate and full access to ALL your health data.
Gapminder Foundation Director Hans Rosling, modern statistician extraordinaire, gave an important talk at the Princeton’s Woodrow Wilson Center on May 26, 09. Almost everything he said about public health data applies to medical data in general. During his talk, Rosling stressed that access to data must be free, and admonished major International organizations such as the World Bank, the Organisation for Economic Co-operation and Development (OECD), and others for charging any access to their statistics.
These organizations say, ‘No, we can’t give the data to the people because they will make wrong comparisons, and they will make wrong conclusions,’ and I say ‘Yes, we call it freedom.’”
Hans Rosling
Rosling said something similar in a wonderful interview with the BBC.
Funny how this talk by Rosling parallels what we have been saying clamoring about patient data: “Free the data! It is mine and I want to control what I will do with it“. It parallels what Regina Holliday has been vividly saying for a couple of weeks, after being told she would have to pay 73 Cents per page and wait weeks for a copy (see below) of her husband’s paper-based medical record. A medical record that documents their ordeal leading to the late diagnosis of a very advanced case of renal cell carcinoma (kidney cancer).
73 Cents per Page!
Regina, a professional artist has started a series of murals in Washington, DC that are created to raise the awareness of the public about some very hard questions asked in very simple English:
- Why do we have more transparency in special education law then in medical care?
- Why do we have more access to information on a box of Cheerios than on a medical chart?
- Why isn’t there a medical counterpart of the Freedom of Information Act?
As Regina says: “People tell me just concentrate on your husband, your family. Too many people have quietly done that. Too many wonderful fathers, mothers and children are gone. Too many graves have flowers on them. I will fight. I will not stop. I will not be silenced.”
Regina and other patient advocates are launching a new advocacy, the “73 Cents” movement. If you are fed up with the system, if you have experienced the pain created by its dysfunctions, you can join Regina in her call: “Now is the time to call your congressman and demand your rights. The law is being made now. Do not be left out.”
Note: Following ePatient Dave advice I changed the title of this post from “e-Patients Do Not Suffer From Database-Hugging Disorder
” to the current title
Gilles,
“Database-hugging disorder (Dbhd): A well known ailment, Dbhd is the statisticians’ tendency to guard their data because of concerns about budgets or misinterpretation.”
I believe there are other database huggers beyond statisticians. I believe there are providers who have a vested interest in making sure both patients and payers don’t see the data, because there is fraudulent, reimbursable (but not real) information in there.
Once patients can see their records, and can exclaim things like “gee – I don’t ever remember having that MRI!” or “the doctor never told me I had _____!” then all bets are off.
Those aren’t concerns about misinterpretation. Those are concerns about getting caught.
AND, those are concerns about figuring out how to replace that previously available, non-transparent income stream.
Gilles,
I’m pleased to learn a new term, Database-hugging Disorder (DbhD). I’m going to use this term more broadly in the scholarly publishing world!
Although I believe that commercial publishers should value databases that they compile and maintain–and charge appropriately, I am enthusiastically following the trend toward govt-produced data and other publicly-funded databases being made openly available. Here’s what I wrote on my blog that links to this article:
A new condition of interest to data publishers: Database Hugging Disorder (DBHD). Humor aside, this post addresses trend toward allowing access to the databases that were used in medical and other studies. In line with the Open Access movement in scholarly publishing that campaigns for free access to research articles where the research was funded with public funds, the open database movement seems to be growing very quickly. Oddly enough, even though the databases hold more value than individual articles (especially when data can be combined from multiple databases), the fact that they haven’t been monetized in most cases may lead research organizations to be more willing to make them freely available while still charging for published artciles based on the data.
There’s a groundswell around this. At TED this spring Tim Berners-Lee gave a great talk about the future of the web that ended with the battle cry “Raw Data Now! Raw Data Now!”
His point is that if we don’t have the raw data, then new discoveries are impossible, new insights are impossible; our future knowledge is limited to previous people’s interpretations. Unlock the data.
Ending DbhD (or even DhD…data-hugging disorder) is a cousin of that sentiment.
Regina’s words are powerful.
Or even better, data-hiding disorder. Why won’t they let us see it??
Gilles,
Congratulations, great article. This is exactly what we want to achieve with our proposed guideline to the WHO (http://recordaccess.icmcc.org/category/WHO)
Cerner one of the largest EMR vendors is already selling the data they have for ove 50 miillion patients.
http://www.ihealthbeat.org/Articles/2009/6/1/Cerner-Markets-Patient-Data-to-Drug-Companies-Researchers.aspx
“Health IT firm Cerner is marketing data from the billions of anonymous patient records it has at its disposal to pharmaceutical companies and researchers, the Kansas City Business Journal reports.
Cerner’s data warehouse includes 1.2 billion lab results, as well as smaller numbers of medication orders and other data. The firm collects the information through data-sharing agreements with about 125 of its software clients.
In a statement, Cerner President Trace Devanny said that although the LifeSciences Group is a “minor contribution to our bottom line,” Cerner views the division as a “key component of our long-term global growth strategy.”
You mean they’re monetizing MY data, right? And not giving me a piece of the action?
I wonder if they’d be willing to donate the proceeds (after expenses) to patient communities. Or to create some pro-bono data analysis tools for patients to use.
I imagine I’ll get some cynical responses but really, I wonder.
Dave,
come on, be serious! Or as Cerner would certainly tell you,”Don’t worry! Be Happy!” They are selling “deidentified data”. You can rest assured that their lawyers have already looked into the right terminology that gives them:
1./ The right to steal your data, and,
2./ The legal protection in case you disagree with their business model.
Nonetheless I think we should raise the bar on this issue. As I said to Sherry earlier, I am planning to write a follow up post, this weekend.
Gilles, Dave,
I have to agree with Gilles that the possibility of compensating patients for using their aggregated de-identified data is remote. (Can we get the credit score companies to compensate us, too?) But, that doesn’t mean it’s not worth raising the bar on the issue. Note, de-identified prescription sales data has been a big business for a long time (IMS Health).
Have any of you read the Google Health Privacy Policy? Google says it “will use aggregate data to publish trend statistics and associations”. In the digital world, most everything we do can be captured electronically & aggregated into databases for analysis. In most cases, the subjects whose behavior is captured not only do not receive compensation, but often they are the target market for the product built upon the analysis. (Think industry surveys & directories.)
So, in the case of large-scale de-identified databases, I am afraid I think it is more likely that we will pay directly or indirectly for information gleaned from our health care records than it is that we will be compensated for the raw data we contribute. The exception could be focused clinical studies where researchers require more direct participation from patients.
On the bright side, the depth and breadth of data available from digital records from large populations of patients should contribute significantly to medical research. Dave, I like your idea of requiring free analysis tools (and access to the data) to patient communities. It is consistent with the call for open access to research financed with public funds.
Gilles, data hugging is my new favorite concept, and thank you for introducing me to Gapminder. Here’s to trumpeting our data to the skies (if we so choose)!
Judy
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