{"id":2556,"date":"2009-06-04T19:36:06","date_gmt":"2009-06-05T00:36:06","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=2556"},"modified":"2009-06-05T10:06:10","modified_gmt":"2009-06-05T15:06:10","slug":"e-patients-do-not-suffer-from-database-hugging-disorder","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/06\/e-patients-do-not-suffer-from-database-hugging-disorder.html","title":{"rendered":"e-Patients Demand: Put An End To
Data-Hugging Disorder"},"content":{"rendered":"

\u201cStatistics should be the intellectual sidewalks of a society, and people should be able to build businesses and operate on the side of them”<\/em><\/p>\n

<\/em><\/p>\n

This quote from Hans Rosling is part of a speech where he presented the following:<\/p>\n

Database-hugging disorder (Dbhd)<\/strong>: A well known ailment, Dbhd is the statisticians\u2019 tendency to guard their data because of concerns about budgets or misinterpretation.<\/p>\n

This definition should of course be broadened. \u00a0<\/strong><\/p>\n

Data-Hugging Disorder:<\/strong> A well known ailment of the medical professions, DHD is a strong tendency to guard the data collected from the rightful owners (the\u00a0patients) because of various control issues.<\/p>\n

Please join me in calling for a total ban on data-hugging disorder<\/strong> 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<\/em> to ALL your health data<\/strong>.<\/p>\n

<\/p>\n

Gapminder Foundation<\/a> 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<\/strong>, 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.<\/p>\n

These organizations say, \u2018No, we can\u2019t give the data to the people because they will make wrong comparisons, and they will make wrong conclusions,\u2019 and I say \u2018Yes, we call it freedom.\u2019<\/strong>\u201d<\/p>\n

Hans Rosling<\/p><\/blockquote>\n

Rosling said something similar in a wonderful interview<\/a> with the BBC.<\/p>\n

Funny how this talk by Rosling parallels what we have been saying<\/span> clamoring about patient data: “Free the data! It is mine and I want to control what I will do with it<\/strong>“. It parallels what Regina Holliday has been vividly saying for a couple of weeks, after being told she would have to pay 73 Cents<\/strong> per page<\/strong><\/a> 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).<\/p>\n

\"73<\/a>

73 Cents per Page! <\/p><\/div>\n

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:<\/p>\n