“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.’”
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).
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